March 2015
Monday 2nd March 2015
Back in Limboland Again
I felt a lot better emotionally on Saturday and Sunday – more stable and grounded, but totally exhausted physically – typical M.E. payback following on from mental stress and lack of sleep – after a bad night I had to get up extremely early to be at the hospital in good time on Friday.
Today I am still very tired physically and have been resting most of the day, but I have been feeling very unsettled again, all day. I had hoped for a phone call from the hospital today, with a revised admission date, but by mid-afternoon there was nothing, so I phoned Mr. Pullan’s secretary to see if he’d managed to sort his diary and fit me in, and if so, when. She wasn’t there, so I left a message on her answering machine, and she hasn’t got back to me.
Hopefully someone will phone tomorrow. I hate this not knowing, and all the uncertainty. At least with the first (abortive) attempt I had a definite date, and could work towards this – and knew what food I needed to get in, when to do the laundry and other practical arrangements. As things stand now, I haven’t a clue. Will I be in this week? Next? When? When I asked Mr. Pullan whether it would be days, weeks or months, he couldn’t tell me as he didn’t have access to his diary, and all he said was that he’d do everything he could to get me in at the earliest opportunity. I doubt if it will be months, because the cancer has got to be removed quickly, and they don’t mess about. I just wish I had a date…
In the meantime, between napping on the recliner and reading my book, I have been online and doing some more research about ileostomies, and am finding the forum I am on to be quite excellent – the advice from the old-timers is invaluable, and they have a lot to teach even the specialist nurses, who do an excellent job, but are always ready to learn from those who live with it! All this is helping me to become more familiar with this foreign country with its very different way of life, and I am finding that the whole idea of it is slightly less freaky now. I know I shall continue to have my moments, but I believe the trend is now generally “up.” My hubby said to me this evening that I would probably be the best-informed patient on the ward (although I doubt that – everybody’s doing online research these days!) and that he was very proud of me. Bless him… I don’t feel at all worthy of that, as most of the time I’m still a quivering jelly about the whole thing!
How I hate Limboland. Its bleak, featureless landscape with all its hidden emotional pitfalls, is not a place one wants to be. At all.
Tuesday 3rd March 2015
We Have a Date!
I had a letter in the post today from the hospital, with the date of my rescheduled surgery – Wednesday 18th March. I have to present myself at 12 noon which means an afternoon operation. I am glad it is not first thing in the morning this time, although I don’t suppose I shall sleep much better on the night before the surgery than I did before!
I am glad that we now have a date to work towards, and I can make arrangements as before – practical things like what food to get in, when to put the last load of laundry on, etc.
However, I still feel unsettled and can’t really put my mind to anything else. It’s a weird period, all this waiting around for the next thing to happen, but at least the time scale is short compared with other medical problems – with cancer they don’t mess about, do they.
Over the past few days I’ve spent a lot of time researching ileostomies and reading other people’s experiences, and in particular gaining a great deal of insight from the stoma forum I am on, where there is not only a lot of excellent information and advice from people very experienced in dealing with a stoma, but it is also a source of a great deal of quite brilliant humour! This has helped me no end, and at least for now I am feeling a lot less freaked out by the whole business. I am thinking of passing the URL on to my stoma nurse because I think anyone having a stoma could benefit from this support.
The stoma nurses are wonderful and offer lots of helpful advice on bags and other equipment, and how to deal with the stoma day to day, and help one through the first, difficult phase immediately after surgery before the swelling has gone down. However, most of them do not have direct experience of daily life with a stoma, and the advice one can get from fellow ostomates has to be worth its weight in gold.
With everything that has been going on, and with my head filled with thoughts and concerns about the surgery and the ileostomy, I have scarcely spared a thought for the cause of all this – the cancer itself. It’s as if we can’t cope with too much all at once, and something has to take a back seat. It is only after surgery, when the removed bowel will be sent to the lab for histological examination, that we will know the full nature of the tumour; how far through the bowel wall it has spread, and how aggressive it is. If the cells are very abnormal, this will mean that I will need some chemotherapy (probably only one cycle) to prevent the cancer from returning. They believe the surgery will be completely curative, but any chemo will merely be to ensure that this is so. I am not thinking that far ahead, and will cross that bridge when we come to it. (How, I wonder, does one cross a bridge before one comes to it…?)
Stoma Awareness
Following an interesting discussion on the stoma forum, I have been giving a lot of thought to stoma awareness. These days, our society is remarkably free and easy about what is acceptable for individuals to do and think, and many things considered taboo in days gone by are now discussed openly. One thing remains very private and not generally considered a subject for polite conversation and that is the subject of our bodily functions. Children gain enormous enjoyment from telling jokes about it, probably all the more so because it is a subject they can see is disapproved of by adults. Maybe it is time that this attitude was changed! What is so wrong with it anyway? We all do it at least once a day, we all buy toilet paper quite openly, and all the necessary plumbing is openly on show in every B&Q and Homebase across the land!! It can also be extremely amusing, if one keeps a child-like attitude! We do tend to take things too seriously.
One person on the forum is a great champion of stoma awareness and wears clothing with stoma awareness slogans etc. She says everybody she knows is aware that she has one, and it’s not a problem. Another member said she thought it was a shame that this had to be a “private club.”
A generation ago, disabled people were hidden away, and it was rare to see a wheelchair user out and about, and people tended to be quite shocked. Nowadays they are two a penny, and much has been done to make that possible, with accessibility awareness, although there is still a great deal to be achieved. People are much more aware these days of medical matters, and most people have access to the Internet, and there are many TV programmes about such things. There are still some ignorant people about, of course, who persecute the handicapped with their old-fashioned and discriminatory attitudes, but speaking from my own experience on the receiving end, most people have a lot more understanding, and make allowances, and are generally very helpful and friendly towards the likes of me, who simply get about in an alternative fashion.
Most of the problems experienced by disabled people come about because their particular disability is invisible. One constantly hears of people being wrongly accused, and discriminated against, for using disabled toilets and disabled parking spaces, because they “look normal.” I have experienced some of this sort of thing in the past, before my disability became more visible and my mobility aids became a badge of approval. When I was little, I had a teacher at my first school who wore two pink hearing aids which were very visible, and had wires attached to two boxes pinned to her clothing. This was the only sort of hearing aid available in the 1950s, and everyone could see she was deaf. Deafness is not something to be ashamed of and hidden away, but today, hearing aids are so small, and so darned discreet, that you cannot tell who is deaf and who isn’t! If a deaf person doesn’t hear what is said, and either ignores the other person or answers inappropriately, they are often discriminated against, and judged as being “stupid.” Some children’s hearing aids are made in fun colours and patterns, and are more obvious. If the disability aid is visible, no explanation is needed, and allowances can be made. And if they are visible, why should they not be attractive? I decorate my wheelchair and every time I go out, I get smiles and lovely comments, leading to enjoyable conversations with total strangers, and they go away with a smile on their face and often such remarks as “You’ve made my day.”
The only difference between ostomates and the normal population is that they poop from the front instead of the back, even if they have to go through a lot to get there. As the forum member also says, we have had to face a great deal of suffering and fear, of things like cancer, before we get our stomas, and to get to that point is something we should be very proud of. She says we should wear our bags with pride!
The bags are very discreet. The first thing Shaz said to me when she and her hubby came to visit recently was, “You can’t see anything, can you!” It’s true – I couldn’t. She was reassuring me. However, perhaps that is part of the problem. They are so darned discreet that you cannot tell who has one and who hasn’t, and this perpetuates the “secret club” attitude and prevents true stoma awareness, where this problem is openly accepted in society. My stoma nurse mentioned a couple of times at my last appointment that it was “sadly often” that she had to go through this procedure with people – the problem is clearly on the increase. Since I got on this bandwagon, I have heard numerous anecdotes from friends about people they know who have stomas, and who manage very well with them and live a full and normal life after their surgery – all very encouraging for me!
Perhaps if we all wore our bags on the outside, this would become as normal as seeing people using wheelchairs! We could put attractive covers on them to co-ordinate with our clothing so that they didn’t look quite so much like medical appliances, much in the same way as I decorate my wheelchair to reflect my personality. People would eventually get used to this, and it would become a much more acceptable part of daily living and people would make allowances for the need to get to the head of the queue for the loo, for instance. Why are we all so embarrassed about going to the loo anyway?
If attitudes were to change, awful things like this could perhaps become a thing of the past:
http://www.walesonline.co.uk/news/local-news/colostomy-bag-leak-sees-grandmother-7607490#ICID
Someone commented that if a baby’s nappy leaked, the mother would hardly be asked to leave the bus!
Anyway, this is just me thinking aloud, and I am sure that because of current attitudes generally, most people reading this will probably be throwing up their hands and saying, “No way!” and I expect that we will all go on hiding our bags and being very discreet, and being very good, not telling people we’ve got one, and attitudes will continue not to change. Oh well.
Saturday 7th March 2015
A Nice Restful Week
It is now just over a week since I should have had my surgery, which was postponed because there was suddenly no High Dependency Unit bed available for me, and my surgeon, Mr. Pullan, said he was not prepared to go ahead without that safety net in place, given my other health issues.
That Friday was a horrendous day and I was left feeling devastated and confused. I had really psyched myself up and was well down the admissions process, having signed the consent form, been measured for anti-DVT stockings, been given my wrist band and had my bag tagged and ready to be sent to the ward. To be sent home at this point was a complete shock to the system, and when we got home I went straight to bed and slept right through till tea time.
Over the weekend I calmed down and came to realise that the postponement was a blessing in disguise – albeit a heavy disguise! What we had hoped for was a good clear fortnight of peace and calm in the house before I was admitted, having got Mum into respite care, so that I could rest, leave all that awful stress behind, and prepare for what was to come. We were completely denied this, by Mum’s obdurate refusal to go until two days before I should have gone in, which cranked up the stress levels notch by notch during that fortnight, leaving me in probably not a fit state for surgery anyway. As things have panned out, we have been granted our quiet fortnight, leading up to my re-scheduled admission on Wednesday 18th March.
I received the date on Tuesday, up to which point I felt very unsettled and in limboland again, unable to make any plans at all because I didn’t know whether I’d be in this week, next week or next month! As soon as I received the date, everything fell into place and I felt normal again for the first time for ages. I did an online grocery order that night and took great delight in ordering lots of foods that I know I shall be forbidden for a long time, if not forever – fresh pineapple, mango and nuts amongst other things! I’ve been pigging out on my favourite foods this week, and on the instructions of Mr. Pullan and Nita, the stoma nurse, abandoned my 5:2 diet for the duration (I will need all the proteins I can get, for my body to heal, and carbohydrates for energy) and as a result, this week I have gained 3 lb! I am not worried by this, because there will be plenty of time to get back on track with the diet once I am fully recovered, and anyway, Nita said, I will most likely lose weight through the procedure.
The house feels completely different in the absence of Mum, and I am enjoying a lovely restful time, being on the laptop, watching TV, lying in late each morning with a good book, cuddling the kitties, and letting my hubby spoil me! He needs the rest, too! He has been rendered utterly exhausted by all the battles with Mum, and was consistently waking at 5 a.m., worrying about what would happen if she continued to refuse to go, and everybody was saying how tired he was looking. He needs to get his strength and energy back in readiness for the time when I come out of hospital, when he will have a great deal of work to do, caring for me in the immediate post-operative period.
When Shaz came to visit recently, I showed her what my hubby calls my “girlie bathroom” and showed her the RUBs (Really Useful Boxes) I am collecting in there for storage – amazingly they fit perfectly in the custom-made shelves that Paul constructed when he created my bathroom for me. I had earmarked one to keep my stoma supplies in, but Shaz said that you get your supplies sent monthly, and it’s quite a big box that arrives, so I would need more storage space than just one box. She told me that she has a plastic tower with drawers for hers, and I thought this sounded a very good idea. I have a fairly large knee-hole space under the counter-top basin, and doing some research on the RUB website, discovered that I could custom-design my own storage tower to fit part of this space. Unfortunately the depth of the space is more restricted than the shelf space, because of the pipes for the basin, but I have worked out that I can have a small tower tucked to the right hand side of the drainage pipe. The tower will stick out about 4 cm beyond the front of the counter but you can’t have everything, and I think it will look fine – I couldn’t find anything else that came anywhere near what I wanted, and being such a RUB junkie, it seemed appropriate to order from them!
Here is a screen-grab of the tower I designed.
You can see that I have chosen three small drawers and one large one, and a set of castors. The tool doesn’t show the top I have chosen – you can choose between a flat top and a “stationery tray” and I have chosen the latter, for storing small accessories like individually wrapped wipes, and scissors. This is what the tray top looks like.
You can also get a stationery insert, which sits in the top portion of a drawer, but I thought the top one would utilise the space better, so that I am not losing any drawer space. You can also choose to have standard RUB boxes instead of drawers, but these would have to be pulled out completely, and the lids removed, in order to access the contents, and their capacity is less than the equivalent drawers, too.
So I think I have planned a nice tower! I can keep spare supplies in the lower drawers, and use the top drawer(s) for stuff currently in use. The whole tower can be pulled out so that I can access the tray in the top, and use the countertop beside the basin to lay things out. It should be here in a few days and I am looking forward to assembling it and putting it in place, ready for when I come home.
I have also ordered another toilet roll holder from Ebay.
I already have a nice free-standing one with a toilet brush underneath, but someone on the stoma forum said that you get through quite a lot of loo paper – it is recommended that you put some in the toilet before emptying the bag, to avoid splashing (sorry if that’s TMI for the more squeamish amongst you!) and it’s silly to use the most expensive soft luxury paper for that! I bought a pack of Tesco’s cheapest, and this will go on the new holder, which has storage for further rolls underneath.
In addition to these home preparations, I have also got hold of a good selection of DVDs from Ebay, that my hubby will bring into hospital when I am up to having the laptop. If I don’t watch them in hospital, they will be something nice to look forward to when I come home. During my searches on Ebay, I also found a DVD of one of my hubby’s favourite films so I bought it for him as a thank-you present, and he is saving it to watch while I am away.
So I’m getting all set up for my return home! The specialist nurse and various other people with whom I have had hospital appointments, have all asked how I am set up at home, and they are reassured that I already have a lot of adaptations and aids in place – stairlift, adjustable bed, perching stools, mobility aids etc. etc. If they think it is necessary, they will get the OT to come out and assess any further needs I might have. They are certainly covering all eventualities.
This week I feel calm and normal, if rather exhausted by recent events! I am deliberately not focusing too much on what is to come, because there will be plenty of opportunity for freaking out nearer the time! These few days are an oasis of calm – the calm before the storm, and I am enjoying so many things, including all the lovely cards and flowers and gifts I have been receiving from our many friends and family members.
Monday 9th March 2015
Thoughts from Within the Bubble
Only just over a week to go now till the 18th – I have to confess that despite the kind words of many friends, when the time approaches I do not think I shall be feeling either calm or courageous – but until nearer the time I am firmly closing my mind to freak-out mode and burying my head in the sand so that we can enjoy this period of peace and quiet. When we went in the first time, for the abortive admission, and at my previous appointments with the High Dependency nurse and the stoma nurse, I was anything but courageous, and weeping all over the place and stressing over Mum… It was quite awful, and on that frightful Friday I was practically climbing the walls. At least Mum is out of the picture for now, and that has helped A LOT. I now know for certain that the Lord organised the postponement of my surgery so that we could, after all, enjoy a clear fortnight sans-Mum, before I go in – something she made quite impossible, first time around, because of her obdurate refusal to go into respite care. The Lord has had His way in the end!
This last week has been great, and we had our wonderful slap-up Chinese meal the other night (probably the last for a long time, if ever – although I shall ask my hubby to get us some more takeaways before it’s too late!!)
I had a really weird experience about the health forum I am on. Back in the summer, I was doing some research about coronary artery spasms after my time in hospital, and came across an article posted by someone on a health forum, and I clicked on the link to see what the forum was all about, and before I knew what I was doing, I’d signed up as a member! I remember saying to myself, “What on earth are you doing, signing up for yet another forum when you hardly have enough time now to keep up to date with the ones you’re already on?” It is a huge international health forum with separate boards for any and every disease under the sun, and you choose which boards you want to join. I initially signed up for the heart one, but actually spend very little time on there now as I have few symptoms to complain about – just the odd angina attack, usually brought on by Mum-induced stress. I also signed up for the digestive system disorder board because of my ulcerative colitis, and soon started making friends. I found that I was starting to bless people on there, and started thanking the Lord that it was He who had directed me there, and it wasn’t a mistake after all! Sometimes with hindsight, what seems to be a mistake can be seen as God’s hand at work – the way things fall so easily into place. Having already made friends on there in advance of my own major crisis, I had my feet “well under the table” and in a position to be helped by others. Truly the Lord knows ahead of time what is best for us!!
I am now so glad that I have spent so much time on the forum, and have been given the time and opportunity to do so. I had no idea I would have anything to give at all – one tends to look on these forums as sources of information, advice and encouragement for oneself, especially when one is a newbie! When I signed up for the stoma board, I could not believe how much helpful advice and fun there is on there, and how generous and honest everybody is, and how encouraging. It has certainly taken the sting out of it and I’ve been getting more accustomed to the idea, in advance of the actual event, although if I let myself dwell on it (which I’m not at present) the whole idea still fills me with horror –my hubby says it’s probably something to do with being a woman, as we are far more concerned with body image than men, and I think this is true. I went into a sort of bereavement after my hysterectomy, although with my head, it was something I wanted done, knowing it would improve my health no end, but in my heart I was depressed and confused, and it was only after one of the wonderful nurses explained that I was grieving for a part of my body that had gone forever, and the part that was central to my womanhood, that I understood that there’s a much more deep-seated, visceral reaction to these things than our rational intellectual reactions. In this case, my external body image was very little changed; the operation scar is now quite invisible. The changes were internal only.
With this, it is quite different. I had no inkling that I had cancer; there was no lump to feel, and no pain, and no untoward symptoms at all. My colitis was well controlled with medication, and I expected the colonoscopy to reveal what I already knew, that the medication was working – it did show that most of my bowel now looked normal and healthy, as opposed to inflamed and ulcerated the whole way round, which is what the first colonoscopy revealed. To be told I had a tumour was a shock indeed.
People on the forum encourage others by saying that once they’ve settled down with the stoma, they will feel so much better because their bowel symptoms that made it necessary in the first place, will disappear. I really don’t have any bowel symptoms now, and what I am going to be facing after the operation will be worse than how I feel now. With my head I know that this has to be done to save my life, because the cancer must go, but it’s much harder to accept than my hysterectomy was. The “head in the sand” part of me wants to run away from the whole thing, saying that surely it isn’t necessary to put me through all that pain and discomfort, and having to learn a whole new way of life, and have my diet ruined so that I can no longer enjoy my favourite foods, when at the moment I feel as well as I ever do! I am also realistic enough to know that it will affect my M.E. and my recovery will be longer and more arduous than for an otherwise healthy individual. So I am starting out with a much more negative attitude towards the whole thing, even though I know that in the long run it is essential for my continuing health, and ultimately for my life. The after-effects of this operation will be clearly visible to me for the rest of my life – a long scar running vertically from sternum to pubic bone, which will not disappear as the other one did, being hidden by hair – and a red stoma protruding several cms from my belly, looking quite alien although it is actually part of myself – and a bag, and no longer any control over the output from my body. To start with, these physical changes will look very much worse than their appearance once the post-operative swelling has gone down, and the stoma will eventually reduce in size in the first two or three months after surgery, so the initial appearance will be a great shock, seeing it at its worst.
I can really understand the feelings of shock, repulsion and grief that people suffer immediately after an amputation or mastectomy. Our body image is very much a part of us, and looking at our own violated body, especially when we are suffering the normal aftermath of surgery – exhaustion, emotional vulnerability, depression, shock and pain (although this latter is being very much better dealt with these days), is a huge thing to take on board. Knowing that the violation is necessary to save our life is a cerebral concept that doesn’t help over-much in the initial days and weeks.
These are complicated issues to work through, and while I know that these very natural feelings will pass, and it is immensely encouraging to read the stories of seasoned ostomates on the forum, and their continued reassurances to us newbies and those imminently approaching surgery that eventually all will be well and we can return to a more or less normal lifestyle, it’s the “getting there” that’s my main problem. When I think about what’s involved, all I want to do is run for the hills. No wonder I am so enjoying being in my current peaceful bubble and so much enjoying the simple pleasures of my life as it is now, and each special meal treat feels like the last meal of the condemned man!! I shall look back on this very special time with great affection, I think!
I am glad we’ve got this fortnight without Mum. I have been very, very angry with her for what she has put us through, and I haven’t seen her since she’s been in the home – for my own peace of mind and keeping calm and focusing on what’s more important at the moment, I’ve kept well away, and this accords with the advice of a great many people. She has had her life and made of it what she herself has chosen – being miserable all the time, and moaning and complaining is HER choice, and I’ve had enough of it, and of her constant shouting at my hubby after all he’s done for her, and I cannot go on carrying the burden of stress. I am waaaay beyond guilt where she is concerned, and she has tried my patience beyond the limit now – provoking me so much that I find it quite impossible to honour her. I actually feel very little now, and am just glad she’s out of the house and out of reach of being able to affect me. Quite frankly I don’t care if I never see her again. I have had to rid myself of all that in order to prepare myself to be strong enough for the operation.
So, I am enjoying Bubble Time. Hopefully before I go into hospital, I will be able to enjoy some physical Bubble Time, soaking in the bath, too!
Monday 16th March 2015
Another Postponement
My hubby came home this afternoon with the devastating news that he’s had a phone call from the hospital to say that because my surgeon has got some sort of family emergency, he cannot do my operation on Wednesday!!! I don’t believe this is happening… I know it’s nobody’s fault, but it’s doing my head in, getting all psyched up for this huge operation and then being let down, not once, but twice! There’s no guarantee at all that this won’t happen again. People say lightning doesn’t strike twice in the same place, but the way things are going, and the hospital bed crisis in the UK as well, I am wondering whether I am ever going to have this operation at all!
So now we are back in the waiting game. It is really very difficult, not knowing when it is going to be, and how long I shall have to wait to hear. It makes practical planning at home quite impossible – things like the laundry, shopping, etc. etc.
All I want now is to just GET ON WITH THIS and get it over and done with. I am sick of all this messing about.
Tuesday 17th March 2015
Diet Planning
Today I should have been busy, getting ready for my admission into hospital on Wednesday but as it happens, after all this emotional stuff, I am physically exhausted and have spent the whole day in Kaftan Mode on the recliner! I have not wasted the time, though, and have been looking at diet options post-surgery.
In the initial post-operative period I shall be on a very restricted, bland, low fibre diet to allow my small intestine and the stoma to heal. After 6-8 weeks I will be able to introduce small quantities of more normal food, one at a time, keeping a food diary to see what effect it has. The most frequently reiterated piece of advice is to “chew, chew, chew” – most people don’t chew their food sufficiently, but for ostomates this is essential. It occurred to me that I now had a theme tune (chewn?) for when I become an ostomate:
The Chattanooga Chew Chew lol!!
I have been very concerned that I will not be able to enjoy many of my favourite foods for a long time, if ever again – I am a huge fruit eater and eat fresh pineapple and mango most days, and I enjoy nuts and seeds, all of which are far too fibrous, or hard – these things can cause blockages and can be very dangerous for ostomates.
On the stoma forum I am on, I have discovered the wonderful world of the modern, ultra-high speed blender. These amazing machines literally pulverise whatever you put into them, in a matter of seconds, and I am thinking of purchasing one. They are not cheap, but if this is going to enable me to continue to eat the delicious and healthy foods I am accustomed to for the rest of my life, it is a small price to pay. The machine I have chosen has an interesting website with comparison videos, working the machine alongside different ones to compare the results, and this particular one is so powerful that it will actually crush rocks!! They’ve got a video to prove it.
http://www.froothie.co.uk/the-optimum-9400-not-just-a-blender.html
The rock crushing video is near the bottom.
I have also decided to start a second blog, after I come out of hospital. This diary page is getting pretty long, and if the surgery does deal with the cancer completely, as we are hoping, then it will become defunct – I shall leave it up, but will probably only add to it after coming out of hospital if I need any chemo. The new blog will have links to and from this main blog, and will be about life with an ileostomy – again, for my own benefit, to look back on and see my progress, and also hopefully to help others going through the same thing. It will chart my progress, and deal with the problems new ostomates all have to cope with in the early days, and will cover such aspects as equipment, diet, things to help (e.g. the high-speed blenders) and last, but not least, humour! It will be a wonderful avenue to share with others what I have learnt, and will continue to learn, from my fellow forum members, and I also hope it will increase stoma awareness.
There are many more bag ladies and gentlemen out there than most people realise. As I wrote in my Stoma Awareness passage in a previous post on this diary, because of the taboos associated with all things poo, nobody talks about it! A beautiful young lady on the forum has recently posted a picture of herself sunbathing on the beach in a bikini, exposing her bag. I salute her courage. Why should we be ashamed?
Hopefully the next entry on this diary will be with a new date for my surgery! It can’t come soon enough now.
Friday 20th March 2015
Gradually Moving Towards the Goal
Today, when the post revealed nothing from the hospital, I decided to phone Mr. Pullan’s secretary to find out if there was any news. She told me that Mr. Pullan would not be returning to the hospital until Tuesday, but that my name was already at the top of his list. I asked her to phone me as soon as the new date was confirmed for my surgery, and this she willingly agreed to do. She said that it was probable that it would be a week today, Friday 27th March in the afternoon, but of course, in the absence of Mr. Pullan, she could not definitely confirm this. This date will be exactly one month after my first, abortive, admission, and I must say I have been thinking a bit more today about the cancer that is still in my bowel, silently growing, and I am now more anxious than ever to get rid of it, so the sooner I can go in for surgery, the better. Mr. Pullan clearly isn’t over-concerned that the cancer will grow that much in the time, or he would have arranged for one of his colleagues to take over in his absence, so I am telling myself not to worry, because I trust those in charge of my care, and they are looking after my best interests.
The delays have been hard to deal with, but in the end, I did need the extra rest, and this final delay has enabled me to do quite a few things that I didn’t think I’d manage to do until later. Our tax advisor/accountant is coming to our catchment area in mid-May, and I need to have filled in his form and collated all my hubby’s paperwork before that time, and knowing from experience what my already foggy brain is going to be like in the period immediately after I come out of hospital, it is good that I have started on this work before I go in. Also, as you will see from today’s regular blog post, my new buggy has arrived, and it’s nice to have given it its maiden voyage straight away, without having to wait until I was strong enough.
I have also used the time to start my new blog, which I wrote about in the last entry on this diary. It is “live” now, although I haven’t yet posted anything on it, apart from the page entitled “What is an Ostomy?” I am still working on the page elements, but I have done enough work now to be able to launch straight into it when the time comes. Hopefully I will be well enough in hospital to have the laptop and to get online after a few days, but if not, it will keep until I get home. If the worst comes to the worst, I can jot down some draft notes in a notebook, ready to compile into blog entries once I’m home again. The new blog is called “The Gutless Bag Lady – Life with an Ileostomy” and you can access it here if you want to hop over and take a look. It is still under construction, but you can get an idea at least.
We are looking forward to a nice quiet weekend before we launch into the whole admissions thing yet again.
Tuesday 24th March 2015
We Have a Date – Again!
Today the hospital phoned to say that Friday 27th March is confirmed as the date for my surgery, as we hoped it would be. I am to go in at 12 noon. I have the energy drinks from the previous abortive admission, and will take the first ones on Thursday, and the second ones on Friday morning before I go in.
Looking back, the two postponements, although really frustrating at the time, have proved to be a blessing in disguise. The first one enabled us to have the complete rest and relaxation after Mum went into the home, which she had denied us before, by her obdurate refusal to co-operate, leaving us only 2 days to recover! The second postponement has enabled me to have a few more days’ rest, and also to achieve more things.
Our accountant/tax advisor is coming down in May to visit our catchment area, and last week he sent his form for us to complete, and had I gone into hospital on 18th March, I would have had to deal with this in the immediate post-discharge period when I would have had anaesthetic and post-operative fog added to my normal M.E. brainfog, and I’m not sure how well I would have coped with trawling through financial papers and getting my head round boring money!! I have been able to get as much information as possible collected together now, well in advance. Also, last week we collected my new lightweight buggy, which we have been putting through its paces, and really enjoying the freedom it gives us, to take trips further afield in the car without my hubby having to push my wheelchair once we reached our destination.
We have also had some meals out, and seen people, and I managed to get to church on Sunday for the first time for several weeks, and it was amazing, as soon as I went through the door – everyone fell on me! They’d missed me, which was so sweet. It was a lovely service, too, and afterwards the visiting minister prayed for me and my situation. They were all able to wish me well and send me on my way.
On Sunday afternoon I phoned a very old friend that I had had no contact with for a while (entirely my fault – she didn’t even have our new address or phone number!) and we were able to catch up. She has now been added to the great number of others who are praying for me!
I’ve been able to sort out a few things at home, like organising the freezer a bit, and today I started getting everything together to format my small laptop which is practically grinding to a halt – it would be lovely if I could get that completed by Friday as it’s smaller and easier to manage than the large one. I am planning to put some videos on it and get my blogging stuff on there too, so I’m all equipped when my hubby brings it in for me. However, I may not get that job completed… it’s quite a big job. I’ve got all my lists of tasks to do, from the last time I did it, so I know what needs to be done. We shall see.
So… off we go again! Let’s hope nothing else goes wrong this time!
Friday 27th March 2015 and onwards…
Admission and Early Days in Hospital
I am writing this diary entry on Sunday 12th April, several days after my discharge. I had hoped to be well enough after a few days, to have the laptop in hospital with me, but it wasn’t to be – I was far too poorly, and unable to concentrate on anything, and it was the last thing I wanted to do.
We arrived at the hospital at 12 noon on 27th March, only to be told that they had tried to phone us (we’d received no message) to say that there had to be yet another postponement – the third!! The reason was the same – sudden unavailability of a High Dependency Unit bed. At this news, I completely lost the plot, burst into floods of tears and sobbing and said “I simply can’t do this again… not again…” and the nurse left us and said she would return shortly. She came back with the anaesthetist about 10 minutes later, and he explained that the main reason for the necessity of the HDU bed was that for optimum post-operative pain relief, they proposed giving me an epidural, which had to be given with a chemical which would reduce my blood pressure, necessitating more constant monitoring than would be available on the ward. He then gave me the option of an alternative post-operative pain management regimen, with a multi-pronged approach, which would be less effective, and would require less assiduous monitoring in the immediate post-operative period, and I said, “I don’t care what you do! Just DO IT!!!!!” and said that even if the pain wasn’t managed as effectively, it was still preferable to being sent home yet again. So we ended up being very glad that we’d never received the message, or we wouldn’t have come in and had this discussion.
They agreed to go ahead on this basis, and went away to set it all up. We had a bit of a wait, which enabled me to calm down, and then I went down, and received my anaesthetic at 3.15 p.m.
The next thing I knew was being awakened (with some difficulty, as I later heard) at 6.45 p.m., only 3 1/2 hours later – I had expected the operation to take at least four hours. My surgeon later told me that it had all gone very smoothly.
I spent the whole night in the recovery room, which was really every bit as good as the HDU – I was monitored at very frequent, regular intervals and during this time had an arterial catheter in my left wrist for continuous monitoring of blood pressure and blood gases, which was removed before I went on the ward. I hardly slept; I drifted off, and each time I woke, saw that the clock above me had advanced by only five minutes… I was completely immobilised by all the attachments and the residue of anaesthetic. My bed was taken up to Allerton Ward (the gut ward) at about 7 in the morning and so my stay in hospital began.
Working down from head to toe, after the removal of the arterial catheter, the attachments consisted of: nasal cannula for oxygen (two little tubes in my nostrils connected via tubes which went behind my ears); naso-gastric tube (NG tube) for gastric decompression – this remained in place for quite a few days and became increasingly uncomfortable; my nose was consistently very dry and congested during this period and I was unable to clear it; cannulae in my hands and wrists for intravenous fluids and the PCA (patient-controlled analgesia) – a syringe driver for self-administration of morphine by the pressing of a button – it is impossible to overdose with this because it remains inactive for five minutes after each button-press, and the doses are monitored; rectus sheath catheters either side of my abdomen for the adminstration of doses of local analgesia via syringe – each bolus took some time to inject owing to the narrow gauge of the lines, and it felt cold as it entered my body; surprisingly no wound drain; urethral catheter – urine collected in a bag and measured, as was the input from the intravenous fluid drip – after these were removed, for the first few days I had to pee into a pan and this, along with my water consumption, was measured, to check my fluid balance; finally, a foot compression system – fabric “boots” on my feet which inflated, compressing each foot alternately, to assist circulation in my legs. One lady on the ward told me that her first thought on waking from her anaesthetic was that Torbay Hospital was a wonderful place – she even had her own personal nurse to massage her feet! This was a strange sensation, somewhat hypnotic, but I found it relaxing and very comfortable.
Over the following days, all these attachments were gradually removed, one by one, until only one cannula remained in my right hand, in case it was needed; eventually this was also removed, and I was free at last! Greatest relief came from the removal of the NG tube; most of the other attachments caused me no problems, apart from the time my PCA morphine cannula failed. It had to be removed, and a very young doctor made several attempts to insert another in my left hand, causing considerable pain and discomfort, and without success; eventually another was inserted in my right hand, but by this time I had been off the “pain button” for some considerable time and my pain level had escalated quite considerably.
Unfortunately my hubby was with me while I was enduring this torture and he saw me at my very worst – the pain caused in my hand reduced me to tears and I felt extremely vulnerable and upset, and then my abdominal pain was too severe for comfort, as well.
That night my hubby went home in some considerable distress. He decided he couldn’t face cooking so he went out to get fish and chips, and managed to trip, and fell headlong in the road and landed on his face.
The next day he came in with a woollen hat pulled right down, and a couple of small black haematomas around one eye; I asked what had happened and he eventually took off the hat to reveal a large and very ugly bump on his head. During this period I was feeling very weepy and emotional (a very normal response to surgery) and it didn’t take much to set me off, and the sight of my poor hubby in this state reduced me to tears! I asked if he had been to A&E and he said he had just treated the bump with a bag of frozen peas and a couple of steroid tablets from his bee-sting allergy kit. One of the nurses heard us talking and said, “Let me take a look at that…” and sent him off to A&E to get checked out. As he thought, he had no concussion, but having it looked at put my mind at rest. The following day he looked an absolute fright – at his very worst, with the bump looking very angry, and two great black panda eyes! His appearance is now much improved, but the bump is still there. My poor dear hubby… Not a good day for either of us, that one!
When I first woke from the anaesthetic my mouth was very dry, and all they would give me was tiny sachets of water, only sufficient to moisten my tongue. Over the next day or so I just received fluids intravenously, but I was soon put on the “free fluids” diet which consisted of soup without lumps, jelly, ice cream, yoghurt and the endless Fresubin energy drinks on offer (I had to drink three of these the day before my surgery) but I hated them as they were very sickly and sweet. After a couple of days of this, I was put on the “light” diet which I am still on; very low fibre: white bread, cornflakes, rice crispies, rice, pasta, honey, yoghurt, mousses, chicken, fish, parsely sauce, rice pudding, ice cream, jelly, eggs in all their forms, potato (no skin) – no fruit or fibrous vegetables, but I can have well-cooked carrot and broccoli (florets only).
After my operation wounds have healed and the internal swelling has gone down (6-8 weeks post-surgery) I can begin introducing other foods, one at a time, and keeping a diary to check the reaction of my stoma. I have a follow-up appointment with my surgeon around this time.
For the first few days, the nurses emptied and changed my stoma bag, and when I was a bit better, the stoma nurse started coming on a daily basis. She came during visiting hours so that my hubby could be involved in the learning process. She showed us how to empty the bag, and how to remove it and clean the stoma, and how to apply a new bag. Each day we did a little more, and eventually we were doing it without her help. One day my hubby did the whole thing by himself; it will be useful for him to be able to do it if I have a bad day with my M.E. and don’t feel up to coping with it. They do not send you home until they are confident that you can manage this independently.
In the early days, they get you out of bed as soon as possible, usually the day after your surgery, but because of my M.E. and a lower baseline from which to begin my recovery, I was not got out of bed until the Sunday. They made me sit in the chair beside the bed, which was too high and incredibly uncomfortable, and I felt very unwell, and I was back in bed as soon as I possibly could. There was no way I could cope with it. Later in the evening I had a brainwave and the nurses phoned my hubby and asked him to bring in my wheelchair, which is designed for my measurements, and I was much more comfortable sitting out. As for mobilisation, I was given a Zimmer frame and initially managed to make it to the loo but needed a nurse to push me back on a commode chair, and I needed assistance in the loo. Eventually I was able to manage all this by myself.
When I had my first shower and hair wash, the OT helped me and I was extremely exhausted afterwards, and returned to bed and didn’t get up again that day. The next time, a few days before my discharge, I was able to manage myself, but did not wash my hair until I returned home.
I slept badly throughout my stay. Part of the problem is that with my M.E., I tend to be mentally alert very late into the night, and was not at all ready to settle down at the same time as everybody else. It was also very noisy, even with earplugs, and they kept disturbing us to do our obs (blood pressure, temperature, blood gases) – at first these were done very frequently, and initially my blood pressure was very low for several days, with my systolic pressure being around 95, and my blood oxygen was low as well, so that I had the oxygen cannula for nearly half my stay. Things improved as I became more mobile. Another problem with the sleep was that because I slept so badly at night, I kept wanting to sleep during the day, which made the night-time problem even worse. I became very frustrated with this. Somehow the hours pass far more slowly at night, and initially I was unable to concentrate sufficiently to read, and my eyesight seemed poor – probably as a result of the morphine.
My hubby took this picture of me the day after my surgery, shortly after I arrived on the ward. He calls it “The Morphine Smile” lol! I look pretty spaced out… I have Nursie Bear to look after me, and she is taking care of my “pain button” – you can see the syringe driver just above her head, along with the IV drip control. I have the awful NG tube and the oxygen cannula in place.
I was very impressed with the post-operative pain management. When I had my hysterectomy 20 years ago I woke up feeling as if I’d been run over by a bus, and on the day after, when I was got out of bed, I was literally begging for mercy because I was suffering the worst pain I’d ever experienced in my life. I was also freezing cold and had to be wrapped in a space blanket, in shock after my surgery. This time, however, having been on a warm operating table with warm air being blown over me, I was not cold and therefore not stressed; all the analgesia was in place when I came round, and there was really very little pain. Things have improved so much.
For pressure management, I was put on an airflow mattress, and my bottom and heels were checked regularly; I also wore the white anti-embolism stockings known as TEDs (apparently standing for “Thrombo-Embolic Disease” which they are designed to prevent). These have a hole under the ball of the foot, so that the stocking can be pulled back in order to examine the heels without removing the stocking. I am still wearing them.
All of us on the ward had daily Fragmin injections (an anticoagulant to prevent blood clots) – this tiny subcutaneous injection in my upper thighs varied from being painless (only once or twice) to extremely painful – on one occasion I nearly hit the ceiling! – and most of the time stinging quite severely after it was injected. Once I made the bad mistake of rubbing the site, which made the pain ten times worse!! We had a French nurse on the ward called Sandrine, and she would come at us with the loaded syringe, saying, “Just a leetle bee steeng…” and none of us enjoyed that! I have to continue with this for 28 days after surgery, and the district nurse is calling each day to do it for me. I shall be very, very glad when that comes to an end.
My next diary entry will be about the end of my stay in hospital, when I actually had Fun!
Comments from my old blog
Zsuzsa Karoly-Smith
1 March 2015 at 09:33
Shoshi, I can only imagine how devastating and unexpected this delay must have been for you having gone through “passport control” and the “departure lounge” fully expecting to “get on the plane”. I thought they would have called you the night before to cancel. Glad to hear you’ve bounced back and appear to be in better spirits now. Keep positive! Gosh, your mum sounds like hard work and high maintenance. Definitely a strong character! As an outsider, I find this kinda sweet and funny for such an old lady (she would make a great fictional character in a movie!) but I know how frustrating it must be for you in real life! Let us know when your new date has been set so we can all root for you! xx
Nannie4
1 March 2015 at 11:52
You are an amazing woman, Soshi, married to a really wonderful man. This journey has had very rough bumps in the road and the two of you have been dealing with it all better than many could. Adding my prayers to all others. Hopefully, knowing that many people are praying with you and have you in their positive thoughts helps. Hugs from Canada.
Eliza
1 March 2015 at 14:09
Soshi, My goodness girl to come so far and then be withdrawn from the surgery what a turmoil, it is a blessing in discuise for sure, you need some quiet time to prepare and now you have it. I so so pleased to read your mother is happy where she is, it will be a huge relief for you. Get the rest you need and I pray that all will be ready to go soon. Yoda and I send our hugs, and love Elizabeth
Lisca Meijer
1 March 2015 at 15:50
How devastating Shoshi! I’m glad you are feeling a little bit better after yesterday’s ‘disaster’. And it will mean you can have a few more ‘spoilies’. It’s really wonderful that your mum has settled in and likes the place. It will make things easier should she need to go again. You might want to make this a regular few-times-a-year occurrence. Just to give you and your hubby a rest. A little holiday away from each other. We will continue to pray for you. We have also been praying for you at our Monday morning ladies meeting for several weeks now. I wish you every blessing, healing and above all the Lord’s peace. You know, the ‘peace that passes all understanding’. Thinking of you, Hugs, Lisca
StampinCarol
3 March 2015 at 22:46
March 18 is the same day I see a Breast Cancer specialist so I will be praying for you and your surgery! It’s hard to know what to say. My mom had 1/2 of her colon removed due to cancer and she did well until she developed myodysplastic (sp?) syndrome. Anyway, God bless you and I will be praying.
Neet
4 March 2015 at 06:56
So sorry you had to be re-allocated, so sorry your husband may need an operation too and so sorry your mum reacted like she did about going into respite. My heart goes out to you Shoshi, you are dealing with so much but it is wonderful to see how upbeat you are. Keep it going girl, it will soon be over and there are a lot of prayers out there for you. Hugs, Neet xx
My name is Cindy
9 March 2015 at 09:52
So good you seem so upbeat – am catching up from abroad with tediously slow connection and iPad so will be in touch properly soon when at my own pc. I think maybe you are right, the delay has been a blessing in disguise. Get plenty of r & r before the big day!Thinking of you, cindy xx
Zsuzsa Karoly-Smith
14 March 2015 at 17:38
Sorry, I’ve been away for a while Shoshi. I started a new job two weeks ago and it’s taken its toll on me. I went from not working at all to full-time work and it’s been a bit of a shock to the system. I haven’t even had time to read my emails and messages. I’ll be thinking of you on the 18th. You have every right to feel all those emotions you’re experiencing – embrace them and let them go. You have faith, which helps a lot! Best wishes xx
Nannie4
27 March 2015 at 00:11
All the best, Shoshi. Looking forward to your post-op posts. Hugs, Annie
The New Politics
31 March 2015 at 06:00
Shoshi, I am glad things seem to be going okay for you in hospital. Wishing you a speedy recovery. I just looked at your blog page. Everything about it is wonderful. Thank you for giving us this gift to the world. I have bookmarked it on my computer so that I can visit this page regularly. Sending you lots of hugs, positive thoughts and prayers. From Nona of The Artists Group on WEGO.
