Shoshiplatypus

February 2015

Wednesday 4th February 2015

Fitness for Surgery

I had hoped to be called in for an appointment this week to hear the results of the scan, but have discovered that the MDT meets on Fridays at Torbay Hospital, so they won’t have had a chance to discuss my case until this Friday, which will mean that I won’t get an appointment till next week now, at the earliest. I should have realised this, because when Sally, the specialist colo-rectal nurse, broke the news to us of the cancer immediately after my colonoscopy, she gave me a print-out giving her name and number, and the examinations I would have to undergo, and on it was clearly stated when the MDT meets. However, I was in a bit of a state at the time and didn’t read it all properly, and dumped it on my desk until yesterday.

I started a loose-leaf ring binder yesterday, where I am filing all my appointments, Sally’s contact details, and various other bits and pieces, and I put this print-out in at the beginning.

This morning I went in for the fitness test to make sure I’ll be OK for surgery. This was with the consultant anaesthetist, a charming lady called Andrea. Sally had told me that the fitness test normally involved going on an exercise bike, which clearly isn’t on for me, and after telling my hubby that we’d be about an hour, we ended up just having a chat.

First of all she took my weight and height, and then sat me down. She said that in view of my heart attack in the summer, it was not really necessary to do the test at all today, because all the at-risk areas had already been extensively investigated quite recently. She asked about any other medical problems I had, and I informed her of my left bundle branch block (LBBB), and my hysterectomy in 1995. We spoke a bit about the limitations imposed by my M.E., and she is aware that my general fitness is low because of poor mobility. I gave her a list of my current medications and we talked a bit about my inflammatory bowel disease and how well I was responding to treatment, and also my chronic mild anaemia which could be the result of the ulcerative colitis, or the cancer, or both. She then had a pretty good idea of my general health, and went on to discuss with me what to expect as far as the surgery was concerned.

The surgeon will be the same one who performed the colonoscopy. From what little I saw of him at the time, he seemed very pleasant and friendly, as everyone at the hospital seems to be (how fortunate we are!). Apparently he likes to do as much as possible by keyhole surgery, but there will also be a larger incision through which they will remove the cancerous portion of bowel.

For many people, apparently, this is sufficient to deal with the problem, but until the histology is done, they won’t know for certain, and I may need some chemotherapy to make sure they’ve got rid of it all. Until I see the surgeon, I will not know exactly how much bowel will be removed, as this depends on the scan results, but I am anticipating most of the transverse colon (which includes the cancerous section at the right hand end, and also the polyp which is situated in about the centre) and probably part of the ascending colon as well.

I asked how long I could expect to be in hospital. She said that at this stage, it was not certain. It is not a question of “in on this date, so therefore out on that date,” but more a question of meeting certain targets and monitoring my progress until they are satisfied it is safe to send me home. For some, this is after less than a week, but for others it could be ten days or more.

I mentioned that my hubby had been in and out on the same day when his gallbladder was removed by keyhole surgery, but she said, “the gallbladder is only this big…” holding up her fingers, “and what we are talking about here is much more major surgery.” Again, until the scan results are in, and the surgeon has decided exactly what needs doing, and how I am post-operatively, they won’t know for sure.

She went on to discuss post-operative pain management, and I must say I was impressed by how much things have improved in the last twenty years – I had my hysterectomy in 1995 and afterwards I experienced the worst pain in my life! She pulled a face and said they’d hope to do a lot better than that. She said that in addition to the general anaesthetic, I would probably also have an epidural, and they also have the option of inserting a couple of lines behind the abdominal wall for the administration of local analgesia. These measures reduce the amount of opioid drugs needed; these can make one feel quite unwell. If morphine is required, though, this would be administered by way of a syringe driver, giving small, measured amounts as a top-up to the other pain management. I feel very reassured by this, because last time, I awoke feeling as if I’d been hit by a bus.

I told her that I had also felt extremely cold (I was in shock) and had to be wrapped in a space blanket. She said that these days, the patient is laid on a heated blanket during the operation, with warm air being blown over the body, so it sounds as if this will be a lot better, too. As for the extremely dry mouth I had had, she said there isn’t much they can do about that. They seem to have covered most eventualities, and I am not too worried on that score now.

I was told that I would have an arterial catheter inserted in my wrist. I know the procedure for this, as I had one inserted under local anaesthetic just before my angiogram. They will use this for the continuous monitoring of my blood pressure and blood gases etc. after the operation.

Having had a hysterectomy, I am familiar with the drains, catheter and intravenous drip, so none of this fazes me particularly because I know what to expect. While they are at it, they ought to wire me for sound and install a satellite dish for my post-operative entertainment. (It would be nice if they could scrape out some of my belly fat, too!)

Immediately after the operation, I will be in the recovery ward for a number of hours, or for a day or two, having intensive care, where the level of continuous monitoring is much higher than on the general ward.

My hubby is a bit shocked by the fact that I shall have to stay in a lot longer than he expected. I think he is only now taking on board that this is major surgery, and serious. I feel very sorry for him, because all he can do is stand by and feel helpless on my behalf. I can remember how he was when I had my hysterectomy – a worrying few hours when all he could do was go out for a walk, and then the further waiting for many hours by my bedside waiting for me to come round and be more my old self again. It’s so hard for the civilians left at home in time of war, to keep the home fires burning, not knowing what the outcome will be, and not being able to help fearing the worst. I shall do my best to behave and recover as quickly as possible, for his sake!

The anaesthetist was impressed with the loose-leaf folder I’ve started. Stuck inside the front cover is Sally’s card with her phone number and the name of her colleague on it – my first port of call to the MDT. Filed in order are all my appointments and instructions, from the colonoscopy preparation, which includes my own list of instructions in a way that was easier for my foggy brain to assimilate than the complicated pink letter they sent me! – and the menus I made for myself during the preparation period. I said I was keeping that, because I expected I’d have to go through the same bowel-clearing procedure before the operation, but she said that isn’t usually necessary, because they perform an enema to clear the rectum, and then clamp the bowel at each end where they are going to make the incisions. This is a relief, because that day being tied to the loo is far from pleasant, and I wasn’t relishing having to go through all that again quite so soon! In the folder I have also put some blank pieces of paper for notes and questions I might think of to ask. She agreed it was good to keep all the appointments in order.

She spoke about the hospital’s policy of full disclosure, and the benefits of involving the patient in the decision making process at every stage of his or her care; this can greatly aid recovery because it reduces stress and worry, and fear of the unknown. I said I’d been doing some research of my own and wanted to know everything – including the staging of my cancer, because I now know what this means, and it will tell me exactly what we are dealing with. I said I had no fear of asking for further explanations if there was anything said that I didn’t quite understand. She said that this was a good attitude, and when I told her I had a naturally positive and bubbly personality, she said this was of great benefit, too, as was my wonderful support backup in the shape of my hubby.

I told her that I also have great confidence in the hospital as a whole, because all our dealings with it in our whole family have been good and positive, and the care has been superb. She was very pleased to hear this. I know that I am in very good hands, and I told her so.

I told her a bit about the stress I’ve been dealing with since the time Mum was living on her own and not coping; our house move, during which my ulcerative colitis was first diagnosed, and I was dealing with a flare, and all the stress I’ve been under for the past fifteen months with Mum since we moved here. She jumped on that and said I must get this sorted before they proceed with my treatment, because I mustn’t be dealing with any stress, but I was able to reassure her that over the past week or so Mum’s behaviour has improved considerably, as her medications are starting to work and she is no longer depressed, and the fact that we have a care package in place, and a lot of the strain of trying to care for her on our own has been alleviated. She was relieved to hear this, and pleased also to hear that we are availing ourselves of local carers’ support. She said I must have peace and quiet and a calm atmosphere, and must avoid stress which could affect the success of the operation or my recovery.

This waiting period is the worst. I am sure that once we know exactly what we are dealing with, things will fall into place and I will feel more settled. At the moment I am finding it hard to settle to anything, and my creative mojo has fled. I haven’t even done any embroidery for about a week! I am sure this will change once we get more definite news. In addition to the strain of waiting, we’ve also had more outings than usual – nice ones (meals out with family and friends etc.) as well as all these hospital visits, and I am feeling pretty exhausted, which isn’t helping much. Although I am not worrying to the extent that I am losing sleep over this, I am not sleeping well at the moment and seem to be going back into that awful M.E. sleep pattern of frequent waking and bad dreams. Soooo not what I need right now!

So that’s the position with Shoshi for now. We may have another week before we get any news. It’s not easy, and I try not to worry about it too much. It’s the next appointment that worries me the most and makes me feel very nervous, when they tell us exactly what we are dealing with, and how bad the cancer is. At the moment, beyond the fact that I have bowel cancer and need surgery, we know very little.

We haven’t told Mum anything except that my colonoscopy revealed something wrong, and “I have to have an operation on my tummy.” Telling her I have cancer would be counter-productive because she has no knowledge of medical matters, and for her generation, the word “cancer” equals “death sentence” which is not necessarily the case these days. She asked if my bowel was swollen or something, and I said that it was – which is not too far from the truth, I hope! Anyway, she accepted that, and there’s no need to burden her with the whole truth of the matter.

Much as I am not looking forward to what’s ahead one little bit, I am anxious to get this show on the road, and over and done with as soon as possible. I am therefore a bit disappointed that this is taking rather longer than we’d expected, because of the scan taking place as far away in time from the MDT team meeting as it was possible to be. However, there’s nothing to be done about that except endure it with patience and fortitude and try not to worry! It will all happen soon enough.

Friday 6th February 2015

Preliminary News

I have just received a phone call from Sally, the specialist colo-rectal nurse, to let me know that they have had their MDT meeting this morning, and that I shall be having an appointment with the surgeon, Mr. Pullan, probably towards the end of next week. I had thought that I would be under the care of Mr. Kenefick, the consultant surgeon who performed my colonoscopy, but Sally informs me that Mr. Pullan is the consultant with the most experience operating on patients with ulcerative colitis.

She was also able to tell me that the scan revealed that the cancer has NOT spread beyond the bowel (WHAT a relief!!!) and that the surgery will be considered curative. Only after the removed section has been sent to histology will we know whether I will need any chemotherapy, but this will be only to prevent a recurrence of the cancer.

This is a huuuge relief. They have obviously caught the cancer good and early.
Mr. Pullan will give me full details of the surgery at the appointment next week, and I am hoping soon after that to receive the date of my admission.

There’s a sensation of relaxation from a tension inside me that I wasn’t even aware was there until it had gone. I am sure this was the cause of my awful untethered feeling over the past two and a half weeks and why I haven’t been able to settle to anything. It was like a distorting lens, distancing me from my normal life which appeared fuzzy and unreal, and everything has suddenly snapped back into focus. I know that I’ve still got to get through the surgery and possible chemo afterwards, but at least we know now what we are dealing with, and the appointment with Mr. Pullan will clarify things further, I am sure.

Comforting Verses

I have just been sent the following link via Pinterest by a blogging friend, Craftie Jellie:

http://simplyclarke.com/2014/10/10-verses-anxious-heart/#disqus_thread

When things are tough in our lives, we need to remember that we are safe in the hands of our loving heavenly Father, and that He will not test us beyond our strength to endure. Thank you for reminding me of this, Jellie!

Saturday 7th February 2015

Waiting

More waiting… (However, compared with how long some people have to wait for appointments, and then again for operations on the NHS, they are certainly getting on with this with great speed, and for that I am thankful.)

The elation of yesterday after hearing that the cancer has not spread, has disappeared, and I again feel rather detached and unreal. I’ve also got a bit of gut-ache and diarrhoea, which is probably just the colitis, and all the fruit I ate yesterday! – but I am mega-conscious of everything going on in that area of my body at the moment so it isn’t helping!

I’ve been thinking a lot about the operation, and also thinking of things I need to ask the surgeon. I am jotting these down on a piece of paper in my ring binder, ready to ask when I see him.

Nothing of note to report at all, today, really, but I’m feeling the cold, feeling very exhausted, and generally wishing this would all be over. There are things I should be doing (washing my hair, doing the accounts, making my hubby a Valentine card, writing some letters, etc.) but I seem to have lost the will to apply myself recently! My creative mojo is still nowhere to be seen, which is a bit disappointing because I thought it would return as soon as I had definite news, and especially if the news was good, as it turned out to be.

I’m so tired… mentally and physically. Goodness knows what I’ll be like after the operation!!!

Tuesday 10th February 2015

Appointment to See the Surgeon

When we arrived home from the carers’ course today, the surgeon’s secretary phoned to arrange an appointment for me to come in and see him. This is for the day after tomorrow, Thursday 12th February at 12.30 p.m.

Unfortunately my hubby has another appointment at 12 noon so he is going to have to drop me off early – about an hour before my appointment, and then pick me up later. I told the secretary I didn’t mind waiting, and would bring a book. The lovely lady asked me to tell the receptionist when I arrived, that I was there, and she would come and give me a cup of tea! How very thoughtful.

Emotionally I am still feeling rather unsettled and the elation I experienced immediately after hearing that the scan showed that the cancer was confined to the bowel and had not spread, has evaporated. My creative mojo is still absent and I am feeling pretty exhausted.

Hopefully after Thursday I will have more information and will know more what to expect, and when the operation is likely to be scheduled.

Thursday 12th February 2015

Bag Lady

Today was my appointment with the surgeon who is going to perform my bowel operation. My hubby had to drop me off early because he had another unavoidable appointment, but as it turned out, I wasn’t seen till half an hour after my appointment, and we had only covered the preliminaries before my hubby turned up, and was able to be with me for the bulk of it.

Originally I was going to have Mr. Kenefick, but was referred to Mr. Pullan, who specialises in patients with inflammatory bowel disease. He was absolutely charming and immediately put me at my ease. He was accompanied by Nita, the other specialist colo-rectal nurse, and the colleague of Sally, whom we saw immediately after my colonoscopy.

Initially, Mr. Pullan seemed rather reticent and hesitant, saying several times that mine was rather a difficult case… I wasn’t sure what he meant to start with, and why he seemed so unforthcoming, and wondered if they had discovered something untoward on the scan which I knew nothing about. I had originally been told that it would be a simple bowel resection, removing the cancerous portion and performing an anastomosis, the joining together of the two ends, and I was reassured that the site of the cancer meant that I would not have to have a colostomy. Mr. Pullan explained that having ulcerative colitis complicated the position somewhat, and he would also have to decide just how much bowel to remove, to make sure that all the cancer had been removed. At first he seemed very hesitant, and I wasn’t sure what was causing this.

He went on to say that in view of the fact that at my first colonoscopy in July 2013 there was no cancer, and now, only 19 months later, it is quite pronounced, he felt that if he were to perform a partial colectomy, he would have to remove the whole of the ascending colon and about three-quarters of the transverse colon, to include not just the tumour, but also the area where there is now a polyp. He said that with ulcerative colitis, and the fact that I had had cancer already, there was a much greater risk of it recurring in the remaining portion of bowel; the rectum was also included in this high-risk area.

At this point, I realised that he wanted to tell me something unpleasant and wanted to spare me, and wasn’t at all sure how I would react – he was definitely walking on eggshells! To put him out of his misery I told him that since my diagnosis, I had been doing a lot of thinking, and a lot of research, and had been in contact with others going through a similar situation, and if he felt that a colostomy was advisable, I would not be against this – I said I just wanted to do what was the best all round, and if he felt more radical surgery was going to be better for me, then to go for it.

The relief on his face was palpable! He said that when I said that, it made the decision making process on his part a lot easier.

He went on to explain if he did a partial bowel resection, the remaining bowel would be so short that the water absorption process would be seriously affected, resulting in my having permanent, serious diarrhoea, and the necessity to go to the loo at least six times a day or more, throughout the day and also at night; this sounded a worse proposition than how I was before my ulcerative colitis was diagnosed, when at least the diarrhoea was confined to the early part of the morning and late afternoon, but on average I was going 10 times a day, and suffered terrible urgency and frequent accidents. In view of my reduced mobility, this meant it took me longer to get to the loo than normal. I said there was no way I wanted to return to that situation, which in this case would be worse because it wouldn’t be confined to two periods during the day. If it was a choice between a partial resection resulting in this level of diarrhoea which would more or less confine me to the house and be extremely inconvenient and possibly embarrassing, or having a panproctocolectomy (the removal of the whole of the large bowel and rectum) and the creation of an ileostomy, the latter choice would be preferable because it would at least be manageable!

He said with relief that this was his ideal choice for me. It was always a balance between doing as much as necessary and as little as possible. It would naturally put an end to my colitis as I would no longer have a colon to be inflamed, and reduce greatly the likelihood of a recurrence of the cancer (although this could still recur in the form of secondaries in the lung or liver). With the partial resection, I would need frequent colonoscopies (at least once a year) whereas with the panproctocolectomy I’d obviously never need another one.

He said he was impressed with my grasp of the situation, and how informed and matter-of-fact I was about it. I suspect that the majority of his patients, faced with such a choice, would be freaking out all over the place and caught between the devil and the deep blue sea, and all he could do would be to present the different scenarios and try to guide the patient along the most beneficial course. I told them about my Cancer Diary on my blog, and they both thought this was a good idea; they were amused by my military visualisation.

I told them that when I was first diagnosed with colitis, my greatest fear was that I would “have to have a bag” and I couldn’t possibly deal with that… My hubby always said if it was necessary, he would help me with it, and he has been so supportive throughout. During the 18 months between my colitis diagnosis and that of cancer, I haven’t really thought much about it, apart from reading the experiences of friends online who have had to go down that route, and what they have said, especially Shaz (thanks dear friend!!) about how well they are coping, and how much less awful it is than they expected, I have become more educated about it, and it has ceased to the ogre of my imagination.

We went on to my long list of questions, some of which had obviously been answered by the above. He laughed when I kept the list close to my chest – “I see you don’t want me to see it!” I thought he might be alarmed at how many there were! First of all, I asked if it was possible for me to see a picture of my cancer, because it still all felt rather unreal – I had no lump, and no pain, and the only reason I knew I had it was through the words of other people. He brought up my colonoscopy images on the computer and I saw it for the first time. I could see how large it was, and how it was narrowing the lumen of the bowel, and that its appearance was quite different from the surrounding, normal tissue – it was dark and dirty looking, with an irregular surface, and I am not a bit surprised that, in Sally’s words immediately after the procedure, “We don’t like the look of it.” It now seems more real. He and Nita both said that it was very normal to have this “unreal” feeling.

I asked when the surgery would be scheduled. He said it would be on Friday 27th February, only 5 ½ weeks after it was diagnosed, which I think is very impressive. Of course, they don’t mess about with cancer, and the sooner it’s out, the better. This means that I have a fortnight to prepare myself, and to organise things at this end in readiness for my return home. He said I would probably be in for about a week, but it might be for a bit longer, given my extra medical problems. I would most likely spend the first 24 or 48 hours in the High Dependency Unit (HDU), one step down from the Intensive Care Unit (ICU) where they will monitor my lifesigns more intensively than on the regular ward, in view of the fact that I had a coronary artery spasm in the summer and also have left bundle branch block, and in view of my M.E. which reduces my general levels of fitness.

Before the operation I do not need to eat a special diet or take laxatives – this is a relief, because the pre-colonoscopy preparation is a total pain and I wouldn’t want to go through all that again quite so soon!!

Mr. Pullan told me that he is not a great advocate of keyhole surgery and my operation will be performed by open surgery. He said it was much better to get a good view of what was going on, and would enable him to remove the whole bowel much more easily, and also deal with any adhesions from my previous abdominal surgery. I asked if he would also be removing any lymph nodes, and he said that all the regional lymph nodes would be removed, along with the associated blood vessels which fan outwards to supply the bowel. The whole operation is likely to take up to four hours.

I asked whether the procedure would be affected by, or would affect, my M.E. He said that they would be aware of this, and the physiotherapist would make allowances for it, and slow down the rehabilitation accordingly. I would be on a special diet for a short time after the operation, to allow my system to recover, and to let the stoma settle down, but once I had recovered, it would be more normal. I expressed concern about whether I would still be able to enjoy the amount of fruit that I currently eat, and he said that shouldn’t pose any problems. The stoma nurses will advise me more on this subject later. Once the ileostomy was functioning, I would be able to resume my medications. My anaemia should correct itself after surgery so I should no longer need the iron, and of course the Pentasa for my colitis would be discontinued. Strange to think of that, because I had been told I’d be taking that particular medication for the rest of my life!

Regarding my convalescence, he didn’t think I’d need any particular help at home, but I would need to adjust my activity levels downwards, and avoid lifting etc. for a while, and I should not expect to feel normal for about three months. This is similar to my post-hysterectomy convalescence, but of course I would be factoring in the M.E. and expect my normal levels of fatigue, which could well be increased as a reaction to the trauma my body will have suffered.

I told them that I was on the 5:2 diet, and asked if I should discontinue this for a while. Nita said that it was important that my nutrient levels were optimal for good healing, and that I should stop it for now. She said that I would probably lose weight with the ileostomy. I asked (half in jest…) whether it was possible, while he was in there, for Mr. Pullan to scrape out some of my tummy fat! They laughed and said everybody asks that! – and the answer is NO!! Oh well. No short cuts to a flat stomach, then.

I have an appointment with my gastro-enterologist scheduled for mid-March, and because by that time I won’t have a bowel for him to be concerned about, that will be cancelled! Mr. Pullan said the hospital would sort that, and I wouldn’t have to do anything.

My post-op follow-up appointment will be about six weeks after I am discharged, but of course there will be stoma care appointments set up, the first being a week after discharge. I will be receiving a phone call about the bowel histology about a week after surgery (Nita said I would probably hear about it at my first stoma care appointment), and this will give me the information about the stage, and grade, of the cancer. From this information they will determine whether or not I require chemotherapy.

I asked about the likelihood of the cancer recurring, and he said they will set up a surveillance programme which will involve scans etc., which over time, all being well, will diminish in frequency. Although my CT scan revealed that the cancer had not spread, there is a risk that I may develop metastases in the liver or lungs as time passes, because if there was just one cancer cell in another organ which could not be picked up on the scan, there is a risk that it would grow into another tumour. If I do have chemo, this would presumably deal with that eventuality.

We talked about the ileostomy, and Nita produced a pack for me to take home – a lovely little pale blue zipped bag containing a short DVD about changing the bag, a book, and several sample bags. They apparently have a great system set up, whereby they do home delivery in an unmarked box and unmarked van (this made me laugh – I thought about them coming in a Tesco lorry!!). As well as bags, they supply skin treatments, and bags for disposal. If I feel uncomfortable about disposing of the bags in the dustbin, the council has a special medical waste collection service and provides yellow bags for this, and they are collected weekly, early in the morning (under cover of darkness? Lol!) There are different sorts of bags available but Mr. Pullan said most people stay with the sort of bag they find attached when they come round from their operation. They showed me how the bag is emptied, and how often people change them, etc., and how you can still shower and bath. Nita said they would put a mark on my belly where the stoma would be, and they would determine that from my sitting position, and any creases in my tummy etc. Each person’s is different and they want to get it in the right place for every individual. The stoma care team will advise more fully on this, of course.

I said to my hubby, “I bet when you married me, you never thought you were signing up to live with a bag lady!”

I shall take a leaf out of Shaz’s book and give it a name. Hers is called Sid. Nothing springs to mind as yet, but perhaps when I see the new-born stoma for the first time, a name will come to me!

So all in all, this morning’s appointment was very informative and fruitful. Despite the fact that this is turning out to be a lot worse than I thought, I now feel a lot better about things because, apart from knowing the exact nature of the cancer, which won’t be revealed until histological examination, I now know exactly what we are dealing with, and what to expect.

This is a very different scenario from that which I was led to expect at the beginning, when I was told that only a small section of bowel would be removed, and it was highly unlikely that I would end up with a stoma. I am glad that I have had three weeks to absorb what has been going on (is it really only 3 weeks? It feels like months!!) and to do my own research, and to hear what fellow-sufferers experience and how they deal with it. The result is that I went in to today’s consultation armed with a lot of knowledge, and was able to make my consultant’s job easier in the choices he has to make, and how he was to express these to me – not knowing me, he would not have known how I would react, and the fact that I made this easier for him, made it a lot easier for me too, as we moved forward together to make the right decision. It takes a bit of adjusting to, but I’ve got a whole fortnight to think about it, and already my mind is more at rest about the operation itself, and the amazing package of care that has been set up for my benefit – the well-oiled machinery of the MDT moving into action and planning ahead for every eventuality. I feel better because my hubby is in agreement and is so supportive; he knows that this will be for my eventual good, and give me the best possible chance of beating the cancer forever. I am so fortunate to have this amazing man at my side.

Monday 16th February 2015

Freaking Out a Bit Today…

After being so positive about everything on Thursday, I’ve had a very stressful weekend with Mum flatly refusing to go into respite care and I’ve had to just walk away and not get involved, but it was very distressing hearing her shouting at my poor hubby. As a result of all this, last night I had angina pains again and had to use my nitroglycerine spray. The anaesthetist told me to get the stress levels under control but easier said than done when the cause of it is just the other side of the door!!

I think because of this I have got very tired, and I’m not dealing so well with the idea of what is to come.

I have been doing quite a bit of research into life with a stoma which has been very helpful, though. I have been through the two books the nurse gave me on Thursday, and we have both now watched the DVD. I think it was the appearance of the stoma itself which freaked me out so much – the idea of having that red thing on my tummy squirting poo is almost more than I can bear the thought of at the moment, but they do say you can get used to anything! Some of the ones I saw on the Internet weren’t so bad, but the one on the DVD is very long and looks like a red willy lol lol!!! I must have a word with the surgeon and ask him please not to put a willy on my tummy.

I have signed up on a stoma forum and that has gone a long way to reassure me today – there is so much brilliant advice on there, and all sorts of hints and tips that people have come up with from their own experience, which the professionals may not know about. They are also an absolute riot and I’ve had the best laugh for ages – one person welcomed me and said with the “Gutless Bag Lady” attitude my battle was already won and I’ll be fine, and warned me that poo would now feature very large in my life. They are all sharing poo jokes and reverting to that happy childhood mentality when anything to do with the loo or bodily functions was hilarious!! I had already decided to name my stoma, following Shaz’s advice, and have found that a lot of people do this, and some of the names are very amusing. I can’t think of a suitable name yet but maybe I have to see this baby first, before a name springs to mind!

Before 27th February I am expecting at least two hospital appointments, but I have not yet heard anything. If I haven’t heard by tomorrow I shall phone Sally, the specialist colo-rectal nurse who is my contact for the MDT, and ask if they’ve got anything arranged yet, because we’ve got various pre-hospital treats lined up and need to fix them – people wanting to come over etc. and it’s hard not being able to give them any dates.

I am vacillating between feeling positive and knowing I’ll learn this new way of life with all the available support, and totally freaking out and thinking I won’t cope, that it will all be too disgusting, that I will become agoraphobic because I’ll get too scared to leave the house in case something embarrassing happens… I am sure these are natural fears experienced by many but it’s not helping. The operation itself makes me feel scared, even though I know the post-operative pain management is so much better than before, and I don’t relish coming round with all those tubes going in and out of me – more even than I had with my hysterectomy. Wondering too how I will cope with major surgery as an M.E. sufferer… I am also worried about when I come home and won’t be able to do anything for quite a while, and hate the idea of being out of control of my life and having others to do the things I usually do – I am so grateful for the offers of help we’ve had already but I’d prefer not to need any help at all! Also I am worried about getting emotional and depressed afterwards (every time I’ve ever been in hospital I’ve come out as a soggy emotional weepy heap and it’s a horrible feeling), and through all that turmoil, having to cope with the bag. I think my greatest fear is feeling out of control of my own life. I really am trying not to get ahead of myself and worry too much but it’s not easy.

I realise that over the past couple of days I’ve hardly thought about the cancer at all. It’s sitting there silently and unobtrusively and if I hadn’t been told about it, or seen it on Mr. Pullan’s computer screen, I wouldn’t even know it was there. I have been far more concerned about the operation, and what the ileostomy is going to mean and how it will affect the rest of my life.

Today I’m not sure which is worse – the awful uncertainty before I knew whether or not the cancer had spread, and then not knowing what the surgeon would say – and knowing what is going to happen and dreading facing it. I wish it was all over and I was already a pro with the bag, but there’s a lot to get through before that.

Wednesday 18th February 2015

A Bad Day Yesterday and Today

I was feeling a bit better again about things this morning, but yesterday was a bad day and it got worse as the day progressed. I think it was partly because I was very tired, and my threshold for coping was lowered.

In the evening after my hubby had gone to bed I had a bad time and felt quite panicky and tearful about the whole idea of the surgery and especially of the stoma, and felt myself rejecting the whole idea utterly, and finding it beyond my capability to deal with it. This is not an option, of course, because if I don’t have it done, the cancer will spread and I will die. This has to be a better alternative than that!

I knew from the outset that this would be an emotional rollercoaster. I never know from one day to the next how I am going to feel, and the untethered feeling is still very much in evidence – I had hoped when I heard the scan results and seen the surgeon that this would disappear and I’d be back to my normal self again. This has taught me not to predict anything, but just to take each day as it comes, and deal with each emotion as it comes, too. I am sure this is all very natural, and I won’t be the first person to be sh*t scared in the face of the coming ordeal.

I had a letter from the hospital yesterday calling me in for another pre-op assessment appointment, which will be tomorrow. I was a bit confused about this because it looked very similar to the letter calling me in for the anaesthetist’s appointment a fortnight ago – is it really that long ago? It seems like yesterday, but on the other hand it feels like months ago! Time is doing such weird things in my mind at the moment… I wondered if they had made a mistake. I thought I would have at least two appointments before being admitted, and neither were what this one purported to be.

I phoned the hospital to check it out, and they explained that this was the appointment with the nursing staff. The appointments I was expecting were one with the High Dependency Unit nurse, explaining what I would experience in the immediate post-operative period before I was transferred to the ward, and another with the stoma nurse. They said that everything would be done in the one appointment, which saves a bit of coming and going. They told me I would be seeing the stoma nurse, and also the Enhanced Recovery nurse.

I have been left feeling a bit confused about this, because Mr. Pullan, the surgeon, explained to me that I would spend the first one or two days in the High Dependency Unit, and then several days on the ward so that they could make sure I reached all their targets before being discharged. Enhanced Recovery is a fast-track system whereby the patient is shunted through in double-quick time after surgery with minimal intervention, with discharge being after about four days. Mr. Pullan said I would be in about a week or possibly more, and nothing was said about Enhanced Recovery. This normally takes place more with laparoscopic (keyhole) surgery than open surgery, which I am having, and I should have thought I would need a bit more time than four days to make sure that the stoma is functioning properly, and to learn how to manage it.

We are still dealing with the problem of Mum refusing respite care, and the doctor came to see her today and missed the point completely, saying he could see no medical need for her to go into residential care, when in fact it is my medical needs that are in question, and that respite care is for the carers, not the carees… The situation is therefore now worse than before, because without his backing, I can’t see us getting any helpful intervention from Social Services or any other agency who might be called upon to get her to see how necessary this is.

After yesterday, feeling so wobbly about the whole surgery and ileostomy business in general, and really struggling emotionally, this is the last straw, and I feel quite desperate, as if everything is spiralling downwards and I have no control over any of it.

I will tell them at the consultation tomorrow, but I can’t see what they can do about it. How can a little old lady of 93 wield so much power and cause so much upset?

Thursday 19th February 2015

Pre-Assessment Appointment

Today is exactly a month from the day I was told I had cancer, immediately after my colonoscopy. Time is doing the weirdest things at the moment, warping in and out, expanding and contracting. One minute it feels as if it was yesterday that this all started, and I’ve scarcely had time to draw breath and assimilate what is happening to me, and at other times, I seem to have been waiting for ages for each appointment or result to come in, and it feels like a year. I am totally out of touch with what day of the week or date it is, and have to keep looking it up.

Today was the final appointment before my admission. It was the pre-assessment appointment with the specialist nurse, and dealt with my admission, the surgery, what to expect, the preparations for surgery, and to answer any questions. I had hoped the appointment would include the stoma nurse but this didn’t happen, unfortunately. I had a lot of questions for her, but I will be able to ask them when I see her on the day of my admission, when they will decide the exact location of the stoma.

When we arrived, I was weighed and measured, and then taken into a room where the nurse took my blood pressure, performed an ECG, took blood, and swabbed me in various parts of my anatomy for MRSA (if the result is positive, they will send me special washes to use before I am admitted, but if negative, I won’t hear anything). We were then sent back to the waiting room.

Then the specialist Enhanced Recovery nurse took us to another room. I was concerned about Enhanced Recovery After Surgery (ERAS) – I had looked this up on the Internet and found that it is a fast-track procedure with minimal intervention, to aid more rapid recovery from surgery. I got the impression that sometimes this might be done with undue haste, and I read some pretty negative feedback from people who had experienced it, and read about people being discharged after 4 days, and I definitely don’t think that should apply to me as I am sure I won’t feel ready after so short a time. Also, Mr. Pullan did not mention this, and said that I would spend the first day, or possibly two days, in the High Dependency Unit (one step down from Intensive Care) to make sure everything was stable before being sent to the ward, and I would probably be in for about a week, or possibly more.

I questioned this, and she said ERAS is a very broad concept, and now more or less universally employed in most hospitals. She said it involved modern post-operative pain relief which has been proved to promote more rapid recovery; the administration of nutrient drinks before admission to strengthen the patient in preparation for surgery, and other techniques. She said it definitely wasn’t a ploy to shunt people through more quickly in order to free up beds and shorten waiting lists. She said I definitely wouldn’t be discharged before I was ready, and that every individual is different, with differing needs, and different rates of recovery. I was reassured by this.

She began by making a note of my medical history, any previous operations I had had, allergies (none), smoking and drinking habits (none), whether I had had any recent falls (no), breathlessness on exertion (some, but due to general unfitness through the M.E.), etc. etc.

She explained the various things I would find attached to my body when I came round from the anaesthetic. These would consist of an intravenous line for the administration of nutrients and drugs, and arterial catheter for continuous monitoring of blood pressure and blood gases (this would be removed when I left the High Dependency Unit), wound drain(s), urethral catheter, line(s) running behind the abdominal wall and epidural line for the administration of local analgesia, and a syringe driver for top-up opioid analgesia, which they like to keep to a minimum because it can make one feel quite poorly. We talked again about post-operative pain management, and the continuing pain relief available after I come home, which would consist of codeine, ibuprofen and paracetamol-based medications in tablet form. She confirmed what I had already discovered online, that Dr. Magides, the anaesthetist, is the hospital’s expert in pain management, so I shall be in good hands!

She gave me quite a large book all about admission for surgery; what to do, and what to expect. I have skimmed through this but will need to spend more time on it. I was also given a bag of bottles of nutrient drinks to boost me in readiness for surgery.

I am to turn up on Friday 27th at 7 a.m.! For goodness sake, that’s the middle of the night!! I’ve got to set my alarm for 6 a.m. and take my final nutrient drink at that time. Since I often don’t go to bed till 3 a.m. it scarcely seems worth going to bed at all… Mr. Pullan and Nita, at my appointment last week, agreed with us in our decision to leave the wheelchair at home, and to bring my crutches into hospital, but the nurse today said that it would be best if my hubby took them home until after the operation; when they first got me up, I’d be on a frame, which would be more stable, especially as I’d be attached to various drips etc.
We spoke a bit about the location and size of the stoma, and I said I didn’t want a red willy sticking out of my tummy like on the DVD! She indicated approximately how long it would be, and said it might seem large at the beginning, but it would shrink with time; there is always inflammation after an operation. We discussed the location of the incision, which will run vertically from just above my belly button, taking a little detour round it, and then down to the pubic line. She reassured me that the stoma would not be too near this incision, to avoid the problems of sticking the bag onto an uneven area of skin, causing leaks. I told her I was on the 5:2 diet, and when I asked whether any further weight loss would cause problems, she said the only thing might be more wrinkles in the skin if I do eventually manage to shrink my belly further, but they would put the stoma on an area where that would be less likely to happen anyway.

I was told there would be dissolving stitches in the main operation wound, and possibly some glue on the surface skin. Where the further end of the rectum is removed, a short distance above the anus, it will be stapled, and these staples will remain in place permanently, and won’t cause me any problems.

She mentioned the need for physiotherapy, and we talked about the limitations imposed upon me by my M.E. I said that the main areas of concern to me were rapid muscle fatigability, general fatigue and lack of stamina, poor mobility and poor balance. She said they were all accustomed to dealing with M.E. patients, and others with different pre-existing medical conditions, and would tailor any physiotherapy around my particular limitations. She said that I was coming in with the sort of problems someone might have after surgery – and with a lower baseline, the results of major surgery would be more severe than with a person in a normal state of health – major surgery causes fatigue, for example, and if I already suffer from this, then it will be that much worse.

She also mentioned that one’s emotions are affected by all this, and I should expect to be weepy and “blue.” I said I’d experienced this with my hysterectomy and knew what to expect.

She said they usually like to get you up and sitting in the chair, but I explained that a lot of my time at home is sitting on the recliner, with my back in a more seated than lying position, but with my legs up because this was a lot more comfortable for me. When I was in hospital after my heart attack, I spent all the time in bed. The beds are adjustable so that I could sit up, but have my legs up too, and she said that they would probably give me some gentle leg exercises to do, such as wriggling my ankles and keeping moving as much as possible, to prevent the formation of DVTs (deep vein thromboses). She asked what my bed was like at home, and we explained that we had recently got an adjustable bed for me, and this, along with its bed lever, will make it easy for me to get in and out of bed – I find this very helpful with my reduced mobility due to the M.E.

She said they may get the occupational therapist in to see if I need any extra help in the form of appliances etc., but I said the house was pretty well equipped for my existing needs, and she made a note of the fact that we have a stairlift. She asked if we had a wet room and I said yes; we’d had a lot of adaptations done when we moved.

That really covered most of my general questions, and the list of stoma questions can wait till I see Nita, the stoma nurse, when I am admitted. I also had quite a lot of diet questions, but she said they would give me a diet sheet, and would be able to answer my questions before I was discharged.

Regarding my diet in hospital, she said they try and get you eating and drinking as soon as possible. For the first couple of days I will have an intravenous drip, and then very quickly they will introduce nourishing fluids, and then small quantities of solid food. She said I may get indigestion and feelings of nausea to start with, and if this is the case, I must tell the staff straight away, and they can deal with it by giving me something via my intravenous line.

I will be catheterised when I come round from the anaesthetic, and with the intravenous drip, they will be able to monitor monitor my fluid intake and output for a few days. She said the stoma would probably start working very quickly, producing quite a lot of very liquid output, but this will settle down. They will obviously be monitoring all this quite closely. The stoma bags they use in the hospital are transparent, so they can examine the stoma without removing the bag, but when I go home, I will have opaque ones.

She told me to bring in all my medications. The Pentasa, which I have been taking for my ulcerative colitis, I obviously won’t be continuing with, but she said I could still bring it in if I wanted the hospital to recycle it, to save us taking it in to the pharmacy. It seems so weird that I will no longer be taking these strange granules twice a day – Dr. Johnston, my gastroenterologist, said I’d have to take it for the rest of my life! After only 18 months to be stopping it, seems strange indeed.

Talking of Dr. Johnston, I have written to him, saying that since I soon won’t have a colon for him to be interested in, I will no longer be attending his outpatient clinic, and thanking him for all he has done for me over the past 18 months – he has improved my quality of life greatly, and given me peace of mind. I said I would miss coming to see him, as I always enjoyed my appointments with him, and appreciated his sense of humour! (I wrote this in one of my Zentangle cards.)

Emotionally, the appointment was very hard. I was in floods of tears for much of the time. Firstly it was the general freaking out at the whole operation and stoma, recovering in hospital and then the whole unknown of the new normal at home, and secondly it was the extreme distress over Mum refusing to go into respite care.

The nurse said that they really couldn’t do anything about that; the only person who might have any say is Mr. Pullan, but she said she was sure he would not involve himself without seeing Mum himself, which he clearly can’t do. She said it was definitely a job for the GPs. I told her what had happened yesterday, and that I felt utterly let down, and she said I should tell them that at the surgery. She suggested we contact another GP from the surgery to get them to come up and see Mum, having a good talk with us first, and letting them see how distressed this is making me, and how I need them to back us up in our decision to move Mum into a home for as long as it takes for me to be well under way with my convalescence. When we got home my hubby phoned the surgery, and my own GP is going to phone on Monday, and hopefully will agree to come up. He told them it was a serious matter and I was in a state of high distress about it.

The nurse went on to say that it was important for my hubby, too, because if he was already tired (which he is), he would be utterly exhausted after I came home, and he must look after his own health too, if he wasn’t to collapse through it all. We really need this move to happen, and to get Mum out of the house for the duration. Her attitude is beyond belief, flatly refusing to go – her daughter has got CANCER for crying out loud, and is about to undergo major surgery, and is already in a highly emotional and fragile state, and all she can think about is what she wants, and her perceived needs. She said to my hubby that she was “far too old and too frail” to go into a home!! It’s people who are old and frail who need to go into homes!! She is actually as tough as old boots and everybody (carers, doctor, district nurses etc.) all say how robust she is, and how good she is for her age – she certainly doesn’t need to be in a home for her own health requirements, but to be in residential respite care for the good of her daughter and son-in-law is definitely necessary! Somehow we have got to get this sorted because the situation is quite impossible. It’s doing my head in at a time when I should be in a quiet and peaceful frame of mind in order to prepare for the ordeal to come.

Wednesday 25th February 2015

Interim Update

Only two days to go now, before my operation. Somehow it seems extremely imminent when you can say “The day after tomorrow…” – much more so than “the day after the day after tomorrow.” I vacillate between being too busy to think about it at all, and being sh*t scared about the whole thing (esp. during the night…)

After putting up with a couple of weeks of extreme resistance from Mum to the idea of going into respite care, and none of our tactics working, including a long letter from me, written from the heart and literally begging her to do this one thing to help us, on Sunday night we came to the conclusion that we just had to get on with it, organise everything and present her with a fait accompli. We did this on Monday, finding a beautiful room with an outstanding sea view in a large modern home (not our first choice which would have suited her better as it was an old house with fewer residents and a very friendly family atmosphere, but no available beds, and given the shortness of time to deal with everything, we had to act quickly). We cancelled the carers and called in at the GPs’ surgery to let them know where she’d be for the time being, and where the district nurses should go, and then my hubby went in and told her. Minimal shouting this time – and after a fortnight of hearing her constantly shouting at him and berating him (so unfair after all he has done for her), she has accepted the inevitable and realised this is a battle she simply can’t win.

This morning, the last carer to come until Mum returns home, came out and spoke to me and said, “Your mum said, ‘She’s putting me in a home, and I don’t want to go.’” The carer reminded her of the seriousness of what we are facing, and that she would have nobody looking after her, and what if something happened to her while nobody was around? She said, “Your daughter would never forgive herself.” Nice tactic. The response? “I can’t hear!” (A prime example of selective deafness!). She repeated it, and there was no reply – only tight-lipped silence. I am waaay beyond guilt over this and feel nothing in response to this, and after all, if she is feeling unhappy and hard-done-by by all this, that is HER choice, not ours.

We had been hoping for a fortnight of peace and quiet, with her already in respite care, so that we could rest and prepare for the coming ordeal, and have plenty of time for what my hubby calls “spoilies.” As it is, we’ve both been so stressed out, and busy trying to get Mum to see sense, that this plan has flown out the window, although we’ve had a few spoilies.

Yesterday afternoon, for instance, he took me to Marks and Spencer’s to get some new things. It’s ridiculous how stress can make you get the silliest things out of proportion, and the night before last here was Shoshi losing sleep over a dressing gown, of all things!! On the info the hospital gave me the other day about what to bring in, they said “a warm dressing gown because hospital corridors can be quite cold.” I folded up my big winter dressing gown and it half filled my bag, leaving little room for anything else, so I took it out, and thought I’d probably be much too hot in hospital, despite what they said! I can’t think that I’ll be spending much time in the corridors anyway. Then began a search for my lightweight summer one, with no success. I think I may have put it in a charity shop when we moved, because I mostly wear kaftans these days, so that if anyone calls and I’m not yet dressed, nobody can tell I’ve still got my nightie on underneath lol! However, I thought a kaftan might be difficult to manage in hospital, and something that opened down the front would be a lot easier. I went to bed worrying about it and wondering whether I’d still got the summer dressing gown or not, and where on earth it could be… In the morning I told my hubby, and he said, “For goodness sake, why not just buy a new one?” Duh. Why didn’t I think of that???

So in the afternoon he took me off and we found a very nice medium-weight one. They had them with zips (not convenient, as you have to bend down to engage the bottom of the zip) and buttons (too much fiddle) so I chose this one that just has a generous cross-over and a tie, all in a nice soft, non-slippery fabric so it will stay closed. I also decided to get a few more nighties as it will be nice to stay fresh while in hospital, and new things always give one a boost too.

Then came the funny part, about the bras – I hardly ever get out to the shops and said while we were there, I might as well get some new ones because mine are practically in rags now! I chose a couple in the size of my old ones, and took my hubby along to the changing rooms and they allowed him to come into the large disabled cubicle with me, just so long as he pressed the buzzer before coming out so the assistants could check there were no ladies around in a state of undress!! I discovered to my horror that these bras wouldn’t even go round me, let alone do up – my old ones have stretched so much that the size on the label is a total lie lol lol!! He rang the buzzer and the lovely lady brought a succession of different ones and recommended what was best… They are all huuuuge and despite my having lost 2 1/2 stone since the summer, there’s something about the mirrors in fitting rooms that make one look larger than ever… I said to my hubby that things have come to a pretty pass when one’s bra has to have THREE hooks on the back, and it took me back to my childhood in the 50s when Mum used to wear “ladies’ foundation garments” – he laughed and said it sounded like concrete blocks!!!

Anyway, eventually I was recommended to buy these huge things that looked like the scoop thing on the front of a digger, and she suggested not getting ones with under-wires in case they irritated my operation scar – not something I’d given a moment’s thought to. My hubby said the whole experience was an eye-opener lol! He was very useful, though, for passing me things!

Have I any pride left? Not a lot!

After this I packed him off so he wouldn’t get bored while I continued with some retail therapy, agreeing to meet later, and I treated myself to some simply gorgeous spring things is soft subtle colours of pale jade and coral – a beautiful silky “boho” top in mixed colours, a coral jumper in a cotton yarn, and a jade shawl collared cardigan, all in their “Indigo” range. I did spend a bit more than I’d anticipated, especially as I only went in for a dressing gown and a couple of nighties, but there you are, we all need spoiling once in a while and I haven’t had any new clothes for ages.

In the evening he went out and got us a delicious Indian takeaway with my favourite Pashwari naan, and tonight we are going for a Chinese meal. I am pigging out on all my favourite foods, because who knows how long it will be before I can eat normally again, and I know certain foods will probably be forever forbidden to me.

Tomorrow morning my hubby is taking me to the hairdresser’s and I’m having all the straggliness trimmed away and the layers redone – unfortunately no time to organise a perm (it’s grown out quite a lot) but I am having some funky coloured streaks put in – purple, orange, etc. This will give me a great lift, and set me up for a bit. There’s no point leaving it till after the operation because I won’t be fit to go for ages, and anyway after major surgery one’s hair is simply frightful – lank and lifeless – and many hairdressing products simply won’t “take” – your hair suffers as your body’s energies are directed towards healing the wounded parts. So, I shall probably shock Mr. Pullan with this vision of loveliness and no doubt he will be very glad when it’s all covered up with a becoming hospital paper shower cap!

This morning my hubby was out having a physiotherapy appointment for his broken wrist – the bone is knit, but there’s still soft tissue damage that’s going to take a long time to heal, and he’s still got pain and some reduction in movement. He was all for cancelling this appointment, in view of everything else that’s going on, with Mum and me, but I absolutely put my foot down at that, and said that on no account was he to neglect his own health, when it was essential for him to remain as strong and healthy as possible.

He is extremely tired, and everyone is remarking on it, that they can see it in his face. He has been saying that once Mum is in the home, he will visit her every day, but we are all saying that he should not do this, for a number of reasons; firstly, it will prevent her from settling in quickly – his presence will be a constant reminder of the fact she’s had to leave home, and secondly, he needs to “lay her down” emotionally and physically, so that he can concentrate on me for the time being. I have told him that while I am in hospital and he’s not visiting me (they are very strict about visiting hours), he should stay home with the kitties and have a good rest, and only go out to do things that he enjoys, just for himself. He has been consistently waking at 5 a.m. and being unable to get off to sleep again with all the worry over Mum, and his quite natural worry for me, and he needs a break, and the opportunity to recover a bit before I come home and need a lot of care and attention. I do hope he takes this advice. The trouble is, unlike me, he is still consumed with guilt over Mum – I am way beyond that after her appalling attitude over respite care – he could not have done more, and has nothing to reproach himself with. By putting her in the home, he is keeping her safe and free from risk, in a safe and beautiful environment, and if she chooses to hate it, that’s her affair, not his. He is looking after our interests – caring for his wife as his No. 1 priority, and at the same time, taking care of himself.

When we got back from our day out yesterday, we found a message from the hospital, and I phoned them this morning to fix an appointment tomorrow afternoon with Nita, the stoma nurse. This was originally going to be before my surgery on Friday, but the nurse who saw us the other day said it was better done the day before, when there would be more time for me to ask my questions. They will mark the site of the stoma with a permanent marker. I am going at 2 p.m. tomorrow.

More news tomorrow.

Thursday 26th February 2015

The Big Black Blob

I cannot believe it – I am going in TOMORROW for my surgery… Time has leapt ahead and it is now upon us.

This afternoon I had my appointment with Nita, the stoma nurse. Despite my best efforts, I again dissolved into tears several times, but she was so supportive and lovely, and said they were all there to help me through this.

She was able to answer all the questions on my list, and reassured me that everything I need – bags and all ancillary equipment necessary to live life with a stoma – would be provided, and they would teach me every step of the way, and be there for continuing support and advice in the future. She said they would tell me the same thing time and again until they knew I had really assimilated it, and said it didn’t matter to them one bit that they may have a harder job of that with me because of my M.E. and the brainfog that makes it hard to assimilate and process information.

She showed us a lot of bags, and said they had so many different sorts that it would overwhelm me if she showed me them all! To start with, she said, they introduced patients to a small selection to try, to avoid confusion. Everything is supplied free, on prescription from the GP. Some people opt to do this through their local pharmacy, but she said the vast majority do it through a local supplier. This way, you not only get the bags, but also all the other equipment you need – dry wipes, adhesive remover, preparations to keep the skin healthy etc. Also, once the stoma has shrunk down to its permanent size after the post-op inflammation has gone down, the bags will be supplied with the opening already cut to your exact size. They even provide a nice bag to keep everything in, that you can take with you when out and about.

She said that initially, after the operation, they will take care of the stoma and bag for you, and after a day or two, most people start to want to do this for themselves, and they are guided through, every step of the way, until they gain confidence. They would not discharge me until they were confident that I could manage this independently.

To start me off after discharge, they will send me home with a limited supply of bags, with various different ones to try, to last for a week to ten days, after which I will have a follow-up appointment at the stoma clinic, where they will see how I am getting on, and advise re bags. They know from experience which bags suit which people.

We talked about the nature of the stoma itself. A colostomy tends to be wider and flatter than an ileostomy, which protrudes more; I expressed severe doubts about this, as the one on the DVD they gave me was absolutely gross and looked like a red willy sticking out of the young lady’s tummy, and I said I did NOT want one like that! She said they had to be more prominent than a colostomy because the output is more liquid, and they have to ensure that it goes into the bag, and not seep underneath the flange which is stuck to one’s tummy, as this can cause severe skin irritation. (Sorry if this is TMI, folks, but I think it helps to be graphic, and honest, for anyone about to go through this, so they know what they are facing.)

Eventually she had a look at my tummy when I was first in a sitting position, and then lying down. We discussed what position I would be in when changing the bag, and in my case this would be sitting on my perching stool in the bathroom. She made a couple of small marks on my tummy and the first one, I am ashamed to say, was invisible to me from above because my tummy is so huge!!! She made one a bit higher, and we decided this was the best site for the stoma.

She then took a large permanent black marker and drew a great black blob on my tummy! This will survive tomorrow morning’s shower, and show Mr. Pullan where to create the stoma. It is on the right hand side of my tummy, pretty well level with my tummy button. I was worried that the bags would be too long and get caught up with the top of my leg when I sit down (I spend most of the time seated) and she said there were lots of different sized bags available, and they would find something to suit.

I then expressed my concerns about making allowances for my M.E. once I was on the ward – a lot of emphasis is made of walking about a lot, sitting up in the chair, eating in the dining area at the table, etc. These things will be hard for me, and I cannot sit on a dining chair and would require my wheelchair, which I have been advised that I will not need on the ward, and it will get in the way – also my crutches – I have been told that I will use a frame initially, and anyway the physio dept. on the ward has a full complement of mobility aids. My hubby chipped in that they deal with patients who have had strokes, or who are disabled in many different ways, who happen to need bowel surgery, so they will be well able to tailor the physiotherapy requirements to suit the individual and their particular limitations. I said I didn’t want to be constantly chivvied to get out of bed, or to do things I knew would be beyond my capabilities or cause me problems with payback – I have had this illness for 8 1/2 years and know my body and my limitations, and they do not. She said I was not to worry; people do listen these days, and it’s not like the bad old days when they ordered you about and didn’t allow you to take charge of the decision making processes for your individual care. I am reassured somewhat, but still slightly anxious because I’ve already got this extra burden to deal with.

As we were coming to the end, she went out to see if Mr. Pullan’s operating list had been finalised for tomorrow. Apparently there was one small case, and two large ones (one being mine); the list is not yet finalised, but she said we could turn up at 8 a.m. instead of 7 a.m. which helps a bit.

The admission process was outlined in the literature given to me by Jane, the specialist nurse who did my pre-assessment appointment. I will detail it here, because after the event, I won’t be in any position to write diary entries or even access my laptop.

On arrival, we check in at Surgical Admissions and are ushered into a large waiting room, with magazines and a TV. My hubby can sit with me here. During the waiting time, I will be taken in to see a nurse, who will take my details, and then measure my legs for the elastic stockings they issue you with, for the prevention of DVTs (deep vein thromboses). I will also be called in to the anaesthetist and may be given some medication at this stage. I will need to see the surgeon, who will mark the operation incision on my abdomen, and there will also be another opportunity to see the stoma nurse.

Half an hour before my operation, I will be taken to a private room and asked to undress and put on a gown. My clothes and other belongings will be bagged and tagged, and sent to the ward (not sure if this will be the High Dependency Unit, or whether it will go straight to Allerton Ward, Torbay Hospital’s gut ward, where I will be spending the majority of my stay in hospital).

I will then go to the pre-op room. Patients are supposed to walk there, and I am not sure at which point I shall have to relinquish my wheelchair. I expressed concern at the idea of having to sit waiting on a hard chair and requested I keep the wheelchair as long as possible, and when I eventually have to leave it, I asked that someone would take it back to the large waiting room where my hubby will remain to collect it, and take it home.

From the pre-op room, patients are supposed to walk to the anaesthetic room – Nita, the stoma nurse, said today that they may put me on a trolley at this point, rather than later, if my wheelchair has gone. Anyway, in the anaesthetic room, the trolley is the next thing, and I may be asked to remove my glasses (not sure what happens to them!), and I will then be attached to monitoring equipment, and taken in to theatre.

I apologised that I was making such a meal of the details, but I have noticed since this all began that I am liable to lose sleep over trivia – I think it’s all part of the overwhelming sense that my life is no longer under my control, and I am feeling very vulnerable and afraid, and I need constant reassurance not only that the details will be taken care of, but that I will be fully informed of what is going on at every stage. (OK, in technical jargon: I am a control freak lol!)

After this whole process, all will be blank (hopefully!) until I come round after an operation lasting approximately 4 1/2 hours. I will remain in the recovery room until deemed fit to be transferred to the High Dependency unit for one, or possibly two, days, after which I will be sent to the ward. The High Dependency Unit is one step down from Intensive Care, which has a nurse-patient ratio of 1:1; slightly fewer nurses per patient in the HDU but close monitoring all the same.
During the operation, I will have various lines attached to my body: an IV line for fluids and nutrients; wound drain(s); epidural; possibly a couple of lines supplying local analgesia behind the abdominal wall; urethral catheter, and an arterial catheter to remain in my wrist for the duration of my stay in the HDU for continuous monitoring of blood pressure and blood gases, to be removed on my transfer to the ward.

Looking at this whole process from street to theatre, reminds me of a traveller’s progress through an airport! You arrive and wait in a large lounge, in the company of your relatives who have come to see you off, and are issued with your boarding pass, have your baggage checked, etc. After this process, you leave your relatives behind and go to the departure lounge, where you wait for your flight to be called. You go to your designated departure gate and board the plane, and after an indeterminate (interminable?) wait, you are told to fasten your seat belt and prepare for take-off, and remain airborne until you reach your destination. The only flaw in this particular visualisation is the lack of Duty Free!! Lol!

See you on the other side, folks. Time to pack up the computer and put it ready for my hubby to bring in when I’m up to it.

P.S. This morning I had a lovely “spoily” – I had my hair done. I had quite a bit cut off and it was re-layered, and I have had three wonderful funky colours put in – a rich copper at the top, purple underneath, and blue at the ends! This has given me a real boost, and it reflects my creative and artistic nature! Watch this space, or my regular blog, for photos!

Saturday 28th February 2015

Flight Delayed Owing to Fog

I think my hubby has managed to contact most people with our latest news, but in case there’s anybody out there not on my regular blogs or forums and who is surprised to see Shoshi back on her computer again so soon, read on for the reason why…

Yesterday we were both up at the crack of dawn and getting ourselves over to the hospital ready for my admission for surgery. Everything was as I described it in my previous update, apart from the fact that the large waiting room with magazines and TV was replaced by a draughty corridor… We went through the admissions process, seeing the anaesthetist who described again what I could expect, and the surgeon, Mr. Pullan, and his registrar, who talked me through the procedure again, and the nurse, who measured me for the anti-DVT stockings, finalised my details, put on my wrist band and labelled my bag, and got me to sign the consent form. I asked about my wheelchair, and she said that for the last bit, I could use a hospital wheelchair – I said that was OK as long as it wasn’t for too long, as sitting in a regular NHS wheelchair gives me severe backache after a while; she said it would be about 10 mins, which is fine. She also gave me a plastic bag to put my glasses in when I go down to theatre on the trolley, and I could probably keep my bra on. She was a bit doubtful about pants, but said they provide paper ones, so I said I’d wear those instead of my own. She told us that the operating list had been finalised, and I was second on the list, after Mr. Pullan’s first case which would be about three hours’ duration. There would therefore be time for us to leave the hospital for a while and do what we liked, as long as nothing other than water passed my lips, so we proceeded to leave.

We were waiting for the lift to arrive when Mr. Pullan reappeared, and said, “Thank goodness I caught you in time…” and led us back into the consulting room, where he informed us that the operation would have to be postponed until another day! I couldn’t believe what I was hearing… We had come so far, and the next stage would be for me to leave for the departure lounge with my ticket and be taken down to plane. He said that a problem had arisen at the last minute, and that a High Dependency bed was no longer available for me. He said he was not prepared to proceed with the operation without this safety net, given my other medical problems. He said that in a situation like this, everybody is a loser – he said he understood how devastating this news must be to us, and also that he now had to waste a 4-hour operating slot, which could not be filled at such short notice.

He said that he would move heaven and earth to give me the next earliest slot available, but could not at that moment say when that might be; he was in his surgical scrubs and away from his office and his diary, but that we would hear at the earliest possible opportunity. We would be given a couple of days’ notice, so that we could go through the process of the energy drinks etc. again. He said he was very conscious of the cancer which needs to be dealt with expeditiously, and that he would do all he could to brook no delay.

We were then free to leave. We were making our way down to the canteen for a much needed cup of tea when we passed the chaplaincy office, and the door opened to issue forth about 5 vicars! The hospital chaplain Sue, whom my hubby knows well, was there, on the spot, to offer sympathy, comfort and tissues – I was in a terrible state. She also asked for our prayers for her, as she was having to deal with two families that day who had lost babies… I was able to catch a glimpse of the fact that other people had far worse problems than mine, which did ameliorate my suffering just a little…

Over the past weeks, I have been on an emotional rollercoaster – one minute up, to the point of hyper, and the next down, feeling vulnerable, tearful and afraid. This latest shock was enough almost to tip me off the merry-go-round altogether and I was a total heap, and I’m afraid that for much of the day I wasn’t very nice to my hubby… I later apologised, and said that a few weeks ago, I did apologise in advance for any unwarranted outbursts, and asked him to try to make allowances as much as possible for my emotional instability. It’s not only me who has been feeling all over the place, after all – he is quite exhausted and has been very worried about me, and having to deal with Mum as well. He’s carrying a lot, and I do feel bad about having been unreasonable and unpleasant with him.

I am feeling absolutely wiped out physically; this whole episode, on top of all the other stress of recent weeks, is taking a toll on my M.E. Mr. Pullan did ask me yesterday (before the news of the postponement) whether all the stress leading up to surgery has affected my M.E., and I told him that it hadn’t really – probably as a result of all the extra adrenalin coursing through my body! This final event has certainly knocked the stuffing out of me, and I am feeling physically exhausted now.

We came home and I went straight to bed, and slept right through till tea time. When I was awake I was still very tearful and emotional. My dear hubby got on the phone and contacted as many people as possible about the change of plan, and hopefully the news will be filtering through OK now. I was quite unable to speak to anyone on the phone.

I had as good a night as I ever do, and this morning, I must say I am feeling quite a bit more grounded, and more myself; my emotions are much more under control, and I am even beginning to believe that what has happened may be a blessing in disguise. Our original hope was that we would get Mum into respite care a good fortnight before I was due to be admitted to hospital, to allow me time to calm down, and enjoy a stress-free environment at home in order to rest and prepare myself for the ordeal to come, but in the event this did not happen, and we only got Mum into the home a couple of days previously.

Now, though, it appears as if Plan A may be happening after all, although I do hope it won’t be a fortnight before I go in. We are now living at home without Mum in the flat, and the place feels entirely different; my hubby has relieved me of all my duties and is allowing me to rest completely, and has been contacting everybody on my behalf. I am reminding myself of the following verse, with which I began this diary:

Romans 8:28: And we know that all things work together for good to those who love God, to those who are the called according to His purpose.

And now, the news about Mum. My sister came over on Wednesday, to help us move Mum to the home. When she arrived, we both went in and started to sort her things to take; she had already packed, it seemed, and had only packed a small suitcase with enough for about a week! My hubby provided her with a larger case, and together we started repacking. While we were doing this, she called through to my sister, saying she wanted to talk to her, and would she please shut the door because she didn’t want her to hear (i.e. me)! Even with the door shut I could hear every word, and it was just more of the same – she didn’t want to go, my hubby and I were so cruel, didn’t her wants deserve consideration, etc. etc. My sister backed us up 100% and said that arguing about it wasn’t going to do any good – she was going, and that was that.

When she was leaving, she said she couldn’t understand how she had upset me so much. I said I’d explained the reason in the letter. She said “I didn’t like that letter.” (She wasn’t meant to like it…) My hubby later told me that when he’d mentioned the letter to her, she had said, “That letter was absolute tosh.” In its short life between being read and later torn into shreds and thrown away, it served a useful purpose as a coaster for her coffee mug.

My hubby and my sister took Mum to the home; I didn’t go, as there was little point. When she arrived, she was welcomed very sweetly by the owner, and she stormed past her without a word. Once in the room, she said it was a “prison” and started marching up and down with her walker, like a caged tiger at the zoo. When a staff member came in, she said, “My daughter [me] has put me in a home… Whoever would have thought it would come to this?” The staff member answered all her demands, and once she was reassured that all her requirements would be met and she could have her own way in all things, by the time my hubby and sister left, she was actually smiling!!

We left her alone until yesterday afternoon, to settle in, and not to be stirred up into dwelling on what she’d given up, as she might have done if she’d seen my hubby. He’d promised to go in on Friday afternoon to tell her how I’d got on with my operation. When he arrived, she asked how I’d got on, and he told her about the postponement, and then she said, “Thank you for finding me such a lovely place.” When my hubby told me this last night, I practically fell out of bed with shock!!! If only she had trusted us to make the right decision for her from the word go, we could have been spared all the unendurable stress of the past fortnight. I was wryly amused that it was me who was accused of putting her into the home, but my hubby who was thanked for finding such a nice place for her! Oh well. I’m beyond caring now.

The big black blob that Nita drew on my tummy to show where the stoma will go has faded somewhat – it took a bit of a beating in the shower yesterday morning – so this morning I went over it again with my own permanent black marker, and while I was at it, added a mouth and some eyes so that it is now a round black nose in a funny face! (Perhaps I should have drawn an animal’s backside around it, like some of the tattoos I’ve seen online around stomas!!) Hopefully it will give Mr. Pullan a laugh, anyway, when the time comes.

My hubby’s physio appointment went well. She said he now has full range of movement except in one direction, and has given him some different, more strenuous exercises. There is apparently some strong resistance to movement in that direction, which may indicate that something has moved out of place, and all the exercises will do is to cause discomfort, but he is to try them until his next appointment and see what happens. He may require minor surgery to correct whatever is wrong if the exercises don’t correct the problem. He will have a further X-ray to check on the bone that was broken. I am very glad he was persuaded to go, because it is essential that he takes care of his own health and doesn’t put it on the back burner, what with everything else that’s going on.

So we now have a few days of the desired respite, with the house to ourselves, and time to prepare for the surgery. I will update this diary when we have another date for take-off, by which time let’s hope the fog has lifted and the destination airport will be ready to receive me.

Comments from my old blog

Kelly
1 February 2015 at 18:41

Sending hugs and positive energy your way. Kelly

Helen Allen
3 February 2015 at 11:13

Hi Shoshi, I was so sorry to hear about your news. What a shock it must have been. How brave you are. I can imagine there are down days but I think you should take heart from the fact you have had regular check ups and that this has been caught as a result. I am going to tell my friend about your trip through the stargaze! She recently had a scan and I think her machine was a tube shape and she was absolutely traumatised by the whole claustrophobic experience. Maybe if she ever needs another one she could ask for this kind of machine to be used. It is a shame you have lost your mojo but I think keep crafting as once you get going I am sure it will help take you mind of things for moments. It took my mind of everything for a couple of hours a couple of weeks ago and I nearly burnt the house down! Shouldn’t joke about it but I was so busy enjoying myself I forgot I put some chicken bones on to make a stock. The house stank as it was full of smoke and is only just returning to normal. Luckily it was just smoke and I can say the bottom of the pot looked like an alien that might appear out of the stargaze!!! 😉 I will be thinking of you and am sending you a little something that may just keep you busy from time to time. I thought that even though I can teach you nothing about Zentangling I can give you something that is almost like colouring in for Tanglers! You could get all your Christmas cards done whilst you are waiting for appointments!! They are very portable so just a couple of pens and maybe some water colour pencils. Not to worry if you don’t fancy it. Just a thought. I will keep checking in to see how you are getting on. Sending Hugs and Best Wishes. Helen x

trisha too
4 February 2015 at 16:10

Just checking in on my favorite platypus, and saying a hello to you! Big hug! 🙂

Anne
5 February 2015 at 08:12

Hello Shoshi just read through all of your Cancer Diary. (You are a talented writer! ) It is difficult to know what to say. As you said one cannot pretend – it is what it is but I pray that the outcome will be the best that it can possibly be. Also hope you don’t have too much longer to wait! Waiting in this situation is the worst thing. It is hard to settle to anything else – no wonder Mr Mojo has ‘done a bunk’ . I am glad to read that your mum is behaving better – I know how stressful trying to care for elderly relatives is. Also glad that you have your wonderful and supportive husband by your side. Hang in there Shoshi!! Anne x Hugs.

Lucy Gregg
5 February 2015 at 10:01

Oh Shoshi I’ve not visited your blog for a while so had missed all of this. I’m so sorry you’ve had this finding but am so glad you had the colitis or it wouldn’t have been discovered nearly as early as it has. That’s a blessing at least. I’m glad you’re being so positive and forward thinking about it – that will definitely help. I’m thinking if you loads & will pop in more regularly for updates. If I can help in any way you know you only have to ask. Loads of love to you & N xxx

Lisca Meijer
5 February 2015 at 23:07

I’m glad your fitness appointment went well and that the doctor was kind and took the time to listen and explain. It all sounds very positive. (and you sound very positive). And that this all coincides with mum’s behavior improving can only be a bonus. You are in our prayers and also prayed for you in our women’s meeting on Sunday. The Lord will sustain you. Keep your ‘pecker’ up as they say. Big hugs Lisca

4timesandcounting
6 February 2015 at 00:00

Thanks for leaving the link to your blog on my blog. The waiting game is so hard. Soon you will have news and a better idea of what you are dealing with. My thoughts and prayers are with you for the upcoming surgery and beyond. Sharon Greene

Esther
6 February 2015 at 07:43

Hi Shoshi, I just heard about the cancer from Lucy. Ohmygosh, I had no idea. I’m sorry you’re facing this, and hugely impressed at your positive and determined attitude. Sending love, a hug, and prayers for this to be straightforward and fully resolved by the op. Love also to your hubby xx

Zsuzsa Karoly-Smith
6 February 2015 at 16:38

Thanks for your visit Shoshi! That is good news indeed – not as good as if they hadn’t found cancer at all as I had hoped, but as far as cancer news go(es?), it is pretty good! You can finally relax a bit and return to some form of normality. Enjoy your weekend! Perhaps your muse will visit, who knows?

C. Jellie
9 February 2015 at 07:32

Hi Shoshi! I am determined to get this comment on your blog even if my system is fighting me!! I hope you are managing to have some relax time- maybe committing to doing some zentangle each day would be beneficial. I also struggle with pain management and have found meditation to be helpful. The mindfulness based stress reduction program is a great place to start and there are guided audits at https://health.ucsd.edu/specialties/mindfulness/programs/mbsr/Pages/audio.aspx you can try. I’ll write you an email with more links etc later. Take care xx

Kelly
9 February 2015 at 15:35

Blessings on the news this has not spread. Know that we are all with you every step of the way and sending tons of love and support. yes, it is difficult for our hubbies to grasp that anything could be wrong with us. Without realizing the facts, they often see us as a force to be reckoned with. LOL Hugs!

Shaz Brooks
12 February 2015 at 21:28

Hi Shoshi, that was some read! You will find some foods go on the ‘can’t eat’ list- it all comes down to food not having as much time to be digested. I can’t eat the skin on baked potatoes/tomatoes etc, salad leaves, skin on most fruit, but fruit itself is ok, advised to avoid sweetcorn/mushrooms/onions, but I’ve found I can eat all of them as long as I chew food well! It is surprising how fast we adapt, even to things that seem like a mountain to climb. Love and hugs from me & Sid, ( who by the way disgraced himself in the shower yesterday, lol) Shaz xxx

Lisca Meijer
12 February 2015 at 23:39

Hi Shoshi, Thanks for sharing your appointment with the surgeon. At least now you know where you stand. I’m glad you’ve been in touch with other ‘bag ladies’ so that you know it can be managed very discretely and needn’t be embarrassing, and is not as bad as it sounds. You are blessed with a positive outlook and a very supportive and loving husband. Sending you love and hugs, Lisca

Sharon Greene
13 February 2015 at 02:55

I’m sorry to hear the surgery is going to be more extensive than you originally thought. It’s ok to feel whatever you are feeling, probably completely overwhelmed right now. I would check with the hospital’s social workers for their suggestions as to some home care that can be put in place. It is major surgery and will take a lot out of you. You will be in my thoughts and prayers.

Neet
13 February 2015 at 18:51

Thanks for your email updating me Shoshi. I am so sorry that this is going to be more extensive than you first thought but you seem to have adopted a very positive attitude. Keep it up girl! A friend of ours in America has suffered for years and had operation after operation taking bits out but finally was told – the big one or nothing. So he went for it. We saw him at Christmas and he looks every bit as good as he has always done. He wouldn’t have anything to do with his bag at first, his wife dealt with it for him but gradually he has learned how to do it and now is totally self sufficient. What is so good about him is that you would never have thought that six months ago he went through this major operation. Just think Shoshi, by summer you will be able to enjoy the lovely scenery that is around your way. God Bless, Hugs, Neet xx

Neet
13 February 2015 at 18:52

Shoshi – please can I have your snail address so i can send you a card. Please. My email address is on the RH side of my blog. Hugs, Neet xx

Anne
13 February 2015 at 21:56

Hello Shoshi. Sorry your surgery is going to be more extensive than you’d thought but also glad that there is something that can be done for you. I felt very humbled reading your post. Made me feel ashamed about some of the things I get upset about. I will be thinking about you and praying for you as always. Also for your dear husband – we are both so lucky with our husbands as mine is also the most supportive man. I guess that there are going to be lots of ups and downs and lots of emotions but you seem such a strong lady so I’m sure you will get through it all. Take care my friend.Hugs ( very gentle ones ) Anne x

Zsuzsa Karoly-Smith
14 February 2015 at 19:22

I’ve only just read your update Shoshi! So sorry to hear that it’s not as straightforward as originally thought. Sounds like you’re in good hands though and you certainly have the right attitude! Your diary will help countless people get to terms with this disease, I’m sure. The detailed information you provide is invaluable to anyone caught up in a similar situation. I’ll be thinking of you on the 27th! They don’t waste any time, do they? Best wishes – sending you lots of love and cyber hugs xx ps.thank you for visiting my blog earlier and for leaving such lovely comments.

Zsuzsa Karoly-Smith
19 February 2015 at 22:36

All set then, sounds like you’re in good hands! Hopefully, the situation with your mum will resolve itself eventually. Look what I’ve found online, just to put a positive spin on things: http://www.itv.com/news/central/update/2014-08-06/bodybuilder-told-his-career-was-over-after-bowel-disease-sports-colostomy-bag-in-fitness-model-role/ You’ll rock that bag!

OutOfNY
24 February 2015 at 23:28

Thank you for publishing the unvarnished truth of your odyssey with cancer. Especially helpful is the exploration of your feelings, hopes and doubts. The “industry” provides very little along these lines. Appreciate your references to “knowing” just by actions, words, lack of words of the medical staff. My hubby is a love but it bothers him that I can so often read the situation without the words being said.

Shoshi (in reply)
25 February 2015 at 11:08

Thank you for this lovely comment, OutOfNY – I’m afraid I couldn’t find any contact details for you so I do hope you pop back and read this reply. I am so glad you are finding my Cancer Diary helpful. The “industry” as you put it, do their very best, and I think that any deficiencies can be made up between the patients themselves. There’s nothing like real experience! My hubby is a real blessing and usually picks things up pretty well, although he does have a tendency to pick up things that aren’t actually there, and make elaborate aerial castles with them lol! What I would have done without him through all this, I really don’t know! I am very, very blessed with a wonderful MDT to see me through this, and a hospital with an excellent reputation nationwide, coming 7th in the national league table for cancer care, amongst other accolades. Everyone has been so kind and supportive, and at every step of the way I’ve been kept in the loop and fully involved with decision making. I am full of praise for them all.

Zsuzsa Karoly-Smith
25 February 2015 at 14:42

I’ve just read your 25/02/15 update, Shoshi! Please do NOT for a second feel guilty about your mum. She will be in the best of hands. Going to a home is totally in her best interest, even if she doesn’t realize this. I hope your hubby will get a chance to relax for a couple of weeks, especially after your successful operation. He will probably and understandably be too nervous to relax before that. I can testify that M&S have the softest dressing gowns in the world! I can never resist touching them when walking around their stores! Will be thinking about you on Friday. xx

Anne
25 February 2015 at 17:37

Hello Shoshi have commented on your WOYWW post – so pleased that you have got your mum into respite care. I agree that your DH needs to rest himself now and stop feeling guilty!! He had already done so much for your mum. He really needs to take care of himself or he won’t be fit to care for you afterwards ( or your mum when she returns) I think it’s great that you’ve treated yourself to new clothes etc. Your plan for your hair sounds brilliant 🙂 and love that you and DH are doing some fun things together. It must all be helping with the up and down emotions you are experiencing at this time. I will be thinking of you praying for you both. Anne x

glitterandglue
25 February 2015 at 17:58

Please, please, please tell N from us that he has no need to feel guilt. He has worked so very hard to please everyone and to care for each of you. Guilt is so very easy to come by. I know that when my dad had to go into a home I felt extremely guilty – but eventually I realised I could not do everything. The safest place for dad was in a home, and the right place for me was caring for John. N, you struck me as a really caring compassionate man when we met you. You have done so much. You are a true shepherd of your flock. Remember that God has said He will never leave you nor forsake you. His word is true. You have his promise and His presence with you as you both face the next few weeks and months. Rest as you can over the next couple of days – even with the busy schedule, and know that you can enter into the “Sabbath rest” which God has for His children. God bless and keep you both, Margaret.

Fuzzie Fingers
26 February 2015 at 22:33

Will be thinking of you tomorrow Shoshi. I must say your hair sounds brilliant!! Best Wishes x

fairy thoughts
26 February 2015 at 22:50

Hi Shoshi, That was a very moving … But insightful read. You may not get this message until it is all over but you will know that we in blog land are all thinking of you. The most important thing (to me anyway) to take with you is your sense of humour……. Go girl … You’ll be fine. Janet

Kelly
27 February 2015 at 02:19

Shoshi… woman you cracked me up with that Red Willie term. Know that I am thinking of you lots and wish you only the best. Sending Blessings your way and to your dear hubby who needs to take care of himself. If i were able, I’d be there to see he got his rest and ate well. Know tht when they make it possible forus to do those types of things via the internet I am right here for you. Cant’ wait to see pics of the new hairdo! Hugs and Blessings! Kelly

Zsuzsa Karoly-Smith
27 February 2015 at 20:52

Hi Shoshi, just heard the news from Julia that your operation had to be postponed. So sorry to hear that! You were so ready to go through with it. Please don’t let this dishearten you! When I took my driving test (and I realize the two can not be compared, but there’s a message to my story) it was first cancelled because there were not enough examiners. Most the drivers failed that day. The second time I got a really nice examiner and I sailed through, which may not have happened the first time around, in which case I would have had to take extra lessons and wait a further three months. So the morale of my story, is that the delay may be in your favour in the long run, you never know! Just hang in there! Hopefully they will reschedule it shortly and everything will work out just fine. Let us know how it goes! xx

Anne
28 February 2015 at 22:23

Oh Shoshi, dear Shoshi I could not believe this. I popped over to Julia’s blog to see if there was any news and read your op had been postponed . I have only the teeniest , tiniest experience of this ( night before my minor op last year got call it was cancelled – no comparison with yours but I was so devastated) I do know that doctors etc so will be so frustrated by this ( my son is a medic) I hope you do not have long to wait for your op. Will be praying so hard for you. X Please, please do not worry re your mum. She is safe and well I’m sure. I too am going through problems re mum and my aunt( her sister) and have learned that you also have to think of yourself and your DH. We also deserve peace , care and consideration etc etc. Our needs also matter. Xxxx God Bless you and your DH. Xxx