Wednesday 12th August 2015
Lots of Appointments This Week
My oncologist is going away this week, so I had to have my appointment on Monday rather than the usual Thursday. I have to go in to the Ricky Grant Day Unit for my bloods on Thursday, and then my 5th chemo on Friday, and next Monday (17th) I have my scheduled stoma clinic appointment. My poor hubby – he is my taxi service to the hospital and he’s wearing a track in the road on my behalf!
The oncology appointment went well. I described, as usual, how I’d been since my last treatment, leaving nothing out. I think my hubby considered that I was moaning about it because he kept chipping in with remarks such as “Well, it’s a good thing if it’s going to get rid of the cancer,” and “I think you’re doing very well,” etc. Eventually I said that it was important for me to be honest about how things were, because if I don’t tell them, they won’t know, and quite often there is something that can be done to improve things, at which Dr. Lo nodded vigorously! I told her how impressed I was with how Dr. Dyke, at my last appointment, didn’t just listen to what I had to say about mucous discharge, but actually did something about it straight away and phoned the stoma nurse and wrote me a prescription for the Micralax. I also told Dr. Lo what my school friend (a 10-year breast cancer survivor and a retired nurse) said: “There are no heroes here!” telling me to let them know absolutely everything and not try to be stoical and suffer in silence – she said to take absolutely everything they gave me, and to be vocal! Again, Dr. Lo nodded, and they both laughed at the hero reference!
My hubby hates me to make a fuss about anything because it makes him feel uncomfortable. He needs to understand that this is not complaining, but explaining. While I really appreciate his support and the fact that he has been with me for every appointment and I really don’t know what I’d do without him, sometimes he is a little too eager to be helpful and the “help” turns out to be a hindrance! I don’t want to make him feel uncomfortable, but at the end of the day, these appointments, treatments, surgery, tests, etc. etc. are about me, and they are my journey, not his, and I have to be allowed to deal with them in my own way, regardless of his tenderer feelings!! I need to be able to answer the professionals’ questions in my own words without him chipping in and trying to be helpful, too. I know he means well and is doing his best, and if this is the only problem I’ve had to contend with, I’ve got very little to make a fuss about at the end of the day.
I described to Dr. Lo how after the last two treatments, I’d felt pretty poorly on the Friday evening, but over Saturday and Sunday, I had picked up considerably and thought I was going to get away with it this time, only to feel progressively worse over the next few days, feeling at my absolute worst on the Wednesday. Thinking about it, I said, the only explanation I could come up with was that perhaps the steroids they sent me home with were giving me a short-lived boost over the weekend, and after taking the final tablet on the Monday morning, I had crashed – she agreed with this assessment and suggested that they give me the steroids for a few days more, tailing them off more gradually, so as to avoid the crash. I said I thought that was a good idea as long as I wasn’t going to be on them for too long because I wanted to avoid the side effects associated with them. She said that in the short term like this, there was no danger of that.
Having told them previously about the nausea problems, I was able to report that the double dose of domperidone had really helped – another instance where letting them know had resulted in positive action. I asked for some more domperidone and loperamide, and she gave me a prescription, and we went on our way.
Last week we went to the Lodge, which is the Cancer Support Centre in the grounds of the hospital, run by Macmillan’s, so that I could attend the first relaxation session – I met up with the other two members of the Allerton Three – the two ladies I became friends with when we were all on Allerton Ward together in hospital – we are going to attend these together. Unfortunately the room where it took place was upstairs and there was no lift, but there was a stairlift which I used, but had to leave the wheelchair downstairs. To begin with, we sat on some pretty uncomfortable chairs. I had no crutches so others had to carry my stuff upstairs and I had to take someone’s arm to get into the room, but I did manage to get myself down onto the floor (and up again lol!) for the session. They provided thin rubber mats to lie on, and a rolled up blanket for our heads, but it was very uncomfortable and the floor was extremely hard! Next time I’m going to have to make better provisions for myself, I think, although I have no idea what, short of taking my bed or my recliner and I think my hubby might draw the line at that!! Anyway, the amazing thing was that by the time I was “in the zone” and fully relaxed, I scarcely felt the hard floor any more. It was amazing. We all enjoyed it, and we had some good feedback afterwards.
Beforehand, the lady leading the session had discussed the importance of relaxation, and that many people found it positively energising, which is something we could all do with when on chemo which makes one feel so exhausted. In correspondence with one of my friends also on chemo afterwards, I said that the way to deal with exhaustion is not to allow oneself to become frustrated with it, because this is a form of fighting the fatigue, which is the worst thing you can do. Frustration is a very exhausting activity in itself. If we can be as relaxed as possible, to accept and even embrace the fatigue as just part of the journey, and take a laid back attitude to everything we are going through, it all becomes a lot easier. Guided relaxation is a good way to deal with this. I have had plenty of practice at this, having had M.E. for nearly 9 years, and dealing with fatigue is a daily task for me. I never thought I’d be grateful for that experience, but I think it is much harder for people who have been living a full and active life before being struck with cancer and having to face the ravages of chemo – they find it a huge shock to the system and have no training or experience in the management of fatigue. We talked about this a bit with the leader of the relaxation group and she agreed with me when I said that I thought fatigue was the poor relation as far as symptoms were concerned – of any condition of which it is a symptom – she said that it is only recently that the professionals have even acknowledged the problems of chemo-induced fatigue. Unless anyone has experienced genuine, pathological fatigue, which is totally different from the “feeling a bit tired” experienced by fit and healthy people when they’ve been doing a lot, and which is relieved by a good night’s sleep, they really have absolutely no idea what it is like, and how totally devastating it can be. This is one of the main problems experienced by sufferers from M.E. when dealing with health professionals who are not trained in the management of the condition – this profound exhaustion tends to be poo-pooed and sidelined and one is often made to feel as if one is making a fuss about nothing, and that it is “all in your head.”
For the past ten days I have been feeling pretty good. This is about half the cycle, and I can put up with that. The oncologist said I was doing pretty well on the 90 percent dose of oxaliplatin, and we still had a bit of leeway if I wanted it decreased again, but I said I’d rather leave that option for the moment in case the time came that the side effects were so cumulative that I wasn’t tolerating them so well. In a month it might be different, but I can put up with the level of effects at present, especially if they do not last much longer than the first week, and especially if the additional steroids help me tolerate them better.
During my “well” times I have been able to be in my studio working on projects. I tend to be better in the mornings and take advantage of this time. Later I feel too tired to do anything much, and spend the rest of the days resting, sleeping, being on the laptop, watching TV etc. and just generally going with the flow. I have not been out at all, apart from the session at the Lodge, and hospital appointments. I am looking forward to having the opportunity to go out on my buggy again before long, especially as I have just completed some art projects with a deadline which have been taking up most of my “well” time. I think my hubby may take me out for lunch tomorrow after my bloods, and we can have a bit of an outing – let’s hope the weather remains fine!
My next appointment in the Oncology Dept. will be with Dr. Dyke, Dr. Lo’s registrar, again. I told Dr. Lo that I was very happy with this, and how nice I thought Dr. Dyke was (she agreed), and how impressed I was that she’d gone the extra mile for me. All in all, I have been more than happy with all the care that I have received.
Friday 14th August 2015
Fifth Chemo Treatment
My hubby dropped me off this morning for chemo #5. The appointment was at 10.40 a.m. which was rather early – they said they like to start the oxaliplatin treatments early because they take 4 hours to infuse. However, my first treatments were at 12.30 p.m. and that suited everybody fine, and while I was one of the last to finish, it was before 6 p.m. when they close. The disadvantage of early appointments is threefold.
- I find it hard enough to get up in the mornings and like to have a leisurely breakfast in bed, and then when I am up, some time in my studio while my energy levels are at their best. I can get up if I have to but later appointments would be more helpful.
- Having it mid-morning messes up my whole day. I do not have any time to take advantage of feeling at my best at the end of the cycle – a couple of hours in the studio would only be possible on a treatment day if the appointment is at lunch time. Also, starting earlier means finishing earlier too, but the time afterwards is spent feeling really poorly, whatever time of day it finishes. I may have more hours post-treatment than pre-treatment with an earlier appointment, but if I am feeling poorly, it is a waste because I can’t do anything anyway.
- It is not good from my hubby’s point of view. He has to take me there and then pick me up. If he has to do this mid-morning and mid-afternoon, both sessions are broken up and he can’t do anything else. If the appointment is at lunch time, he gets a free morning and a free afternoon (with me being collected later) in which to do his own thing. He does so much for me and it would be nice for him to have these extra sessions to go out, or to work in his garage or in the garden, and take his mind off my health problems for a short while!!
I had a word with the nurse about this this morning and they have made the next appointment for 12 noon on 4th September. This is certainly an improvement but it does mean we have to leave the house at 11.30 which is a bit early from my hubby’s point of view if he wants a clear morning. When he picks me up he phones through to see when I’ll be ready, and that is usually around tea time, giving him a clear afternoon.
When I arrived, they flushed the port as usual, and got me connected up. Again, absolutely no pain as the gripper needle went in. I think the combination of the Ametop local anaesthetic cream, together with repeated needle jabs into the port site causing some scar tissue to develop which reduces sensitivity, is really helping. There was no problem with the port today, and the nurse said, “This is the only time we like the patient to be a little bleeder” lol! – as a small flow of blood as they pull the syringe back proves that the port is functioning properly. They can then flush it out with saline and get me connected up to the IV pole and wheel me into the treatment room.
It was quite a good day today, with some nice people to chat to, and I also did some of my knitting, and I did some puzzles and listened to my iPod too, and ate the nice sandwiches my hubby had made for me.
Yesterday when I went in for my bloods, I sought out Liz, a nurse who I had had a conversation with last time about the Royal Engineers. Both her hubby and her daughter are in this branch of the British Army and absolutely love it. I told her that my grandfather had served with them in WWI and she was very interested in that. When I got home I had a rummage in my button box and found the Royal Engineers buttons that I’d inherited from Grandpa along with all his other buttons which had just got mixed up with my existing collection – there were quite a few and I knew I could spare a couple, so I put them in a little bag and yesterday I gave them to her. She was overwhelmed and so thrilled! She said I had made her day, and I replied that her response had made my day! She said her husband and daughter would absolutely love them. I told her about the large album I am making about my dad’s life, and that I had nearly finished the Ancestry page which included bits about Grandpa in WWI, and she said she’d love to see it.
I took it in today, and later on when she had a free moment, she sat with me and I showed it to her. She absolutely loved it, and I showed her the button that I had incorporated in the page. She said her hubby’s response to the button was overwhelming – he is going to make a display of his medals and is going to put my button in with them! She said he pointed out (which I hadn’t really thought about) that those buttons are now 100 years old. Grandpa volunteered at the start of WWI in 1914. I offered to email her the photos of him in his uniform and she was thrilled.
She said, looking at the photos of him (and I had quite a few of him, his siblings and his parents) that she could see that I had exactly the same facial bone structure! I said I’d never really thought about that, but always thought Dad looked like him, and I look like Dad, so I suppose it figures! Looking more carefully at my great-grandfather’s photos, I could see that his forehead and nose were identical to Dad’s. Liz went and fetched a photo of her mum when she was young in the 1950s and her smile was identical to Liz’s. Fashions, hairstyles and photography may change with the generations, but genetics don’t. It’s fascinating to see these family resemblances going on through the generations.
This was such a lovely upbeat conversation and before I knew it, my treatment was nearly over! I did start to feel rather poorly again during the final hour, and felt dreadful by the time my hubby came for me, and I’ve been resting on the recliner all evening since. Fortunately this time my hands have not seized up so I have been able to type, hence my updating this page tonight rather than tomorrow or later.
I’m back in to the Ricky Grant Unit on Thurs. 3rd Sept. for my bloods, and then treatment #6 the following day, Friday 4th Sept. After that, I will be three-quarters of the way through! I can’t believe I’ve already had 5 of the 8 – this is real progress, and the time is flying by, which means that my final one on 16th October will probably be here before we know it.
Now I’ve just got to go with the flow for the next 10 days, see if the extended steroid dose helps, and concentrate on climbing the ladder to face the next snake on 4th Sept.
Monday 17th August 2015
My Final Scheduled Stoma Clinic Appointment
I had a stoma nurse appointment this a.m. and she was very impressed with how well the operation wound and Kermit have healed up, and how clean and healthy the peristomal skin looked. Because I am doing so well, she hasn’t scheduled another appointment unless I have any problems.
In a previous entry in this diary you can read about the problems I’ve had with mucous discharge from my rectal stump since my surgery, and how the oncologist dealt with it, prescribing the Micralax mini-enemas. These have not proved a great success, generating a lot of pain. Today the stoma nurse gave me some glycerine suppositories to try instead, which are more gentle and shouldn’t be so painful. The discharge doesn’t seem to be so bad at the moment. I do find that the discharge comes in waves – for a couple of weeks or so it’s a real problem, then it seems to disappear for a bit, only to return. It’s very unpredictable, but the chemo does make it worse. I shall be trying the suppositories when it returns again. The nurse said that if I get on OK with them, I can get them on prescription via my GP.
The stoma nurse was impressed with how well I am, despite the chemo, and how well I am coping. We chatted about attitude, and how being positive, upbeat, keeping a sense of humour, and thinking of others, all help one enormously. I have every expectation that I am going to beat the cancer completely and make a good recovery from all the illness and trauma of this year. I said to her that it has changed me, and hopefully made me a better person, and I have learnt so much, and made so many new friends around the world, and unpleasant as much of the procedure has been, given my time again, I would not change a thing. I never, never thought I could ever say such a thing but it is really true. My life has been incredibly enriched through this experience.
The stoma nurse loved my hair! I told her I’ve started telling people it’s a side effect of the chemo lol! I’m waiting for someone to say, “What are you on? Can I have some?” Hahaha!!
Friday 21st August 2015
A Week On from Treatment No. 5
It is now a week on from my last chemo. They increased the steroid dose last time in the hope of avoiding the mid-week “crash” I have experienced before, but unfortunately I am feeling worse this time than before. I haven’t noticed any difference at all after the increased steroids. I shall naturally tell the oncologist about this next time I see her – that will be on Thurs. 3rd Sept., the day before my next treatment. I was told there was still some leeway and they can still reduce the chemo if necessary. The peripheral neuropathy at least isn’t quite so bad this time, which is a bonus.
The main effect has been devastating fatigue and a general feeling of unwellness. No nausea – the doubled dose of domperidone has sorted that, thank goodness. Just generally feeling totally horrible! I have a horrible taste in my mouth and my sense of taste is definitely off, and I can’t keep awake at odd times of the day. I am behaving like a cat at the moment and just sleeping when I feel like it. Most of this seems to be during the day unfortunately, because if there’s one thing I hate, it’s lying awake in bed at about 4 a.m.!! I am too tired to concentrate on reading, and if I listen to an audiobook on my iPod, that can send me off to sleep but then I lose my place in the book!
I do not have much appetite. My hubby has been looking after me very well, providing me with small, appetising and tasty meals but I’m not enjoying food much at the moment. All I’ve been able to do during the day, between sleeps, is be on the laptop and surf the net and watch art videos… That’s been enjoyable at least.
One thing I have discovered for sure, about “first bite syndrome” – that weird effect of oxaliplatin (the chemo I am on) where you get a severe sharp pain in the region of your mandibular joint when you first start eating. I’d been warned about this, the oncologist telling me it was like a muscle spasm. It certainly brings one up short and one can’t go on chewing for a few seconds! When it first happened to me, after the first treatment, I was instantly taken back to when I was a small child and had mumps – I remember eating a tangerine and experiencing exactly the same excruciating pain in that area – the salivary glands were inflamed and the sudden outpouring of saliva was extremely painful. I mentioned this to the oncologist on one occasion. This time, a day or two after my treatment, I was reading a sad bit in my book and started to cry, and was shocked that as the tears started to flow, my eyes became extremely painful! I think this bears out that this weird effect is glandular, not muscular!
I know that this will pass in time, and I have to continue to remind myself to go with the flow and it will get better. Chemo is the pits, but unfortunately it’s necessary!! Life takes some strange twists and turns sometimes, and it’s amazing to find oneself in a position of voluntarily submitting to such a thing! Nobody is forcing me to do this, and at any time I could run for the hills, but that wouldn’t be a very sensible decision, would it. There are plenty of people a lot worse off than me, so I have to stop moaning, grin and bear it, count my blessings, and soldier on.
To return to my early visualisation about joining the boot camp and then advancing into the battle, I have been thinking about the war going on in my body at the moment. In every war there are casualties, on the winning side as well as the losing side. Sacrifices have to be made in order for victory to be won, and the establishment and preservation of a better way of life for one’s nation, and dealing with the dastardly enemy in an appropriate fashion so that he cannot return and wreak further havoc in the future! My normal cells are taking a beating from the cytotoxic chemicals coursing through my system and they are rebelling, but the casualty lists are being monitored by headquarters, and appropriate strategic manoeuvres are being undertaken in order to reduce the casualties to a minimum while still exacting sufficient damage on the enemy in order to defeat him.
As they always used to say, in both World Wars, “It’ll all be over by Christmas.” I am sure in my case that that will be so!
As in the aftermath of any war, repairs have to be made, rationing may continue for some time, and individuals have to learn to tighten their belts and make many personal sacrifices until a state of normality can be resumed; the general population has to deal with the consequences of huge amounts of resources having been devoted entirely to the defeat of the enemy, at the expense of the national economy and the prosperity of the people. These things take time to recover, and a concerted effort. The effort involved on my part will involve continuing to rest, to allow my body to recover from the effects of the chemo as they are gradually eliminated from my body, and to keep a positive attitude.
I heard from a friend this week, whose wife died of cancer a year ago. He gave me a pithy and apposite piece of advice:
“Don’t fight the chemo – fight the cancer!”
Comments from my old blog
Anne
12 August 2015 at 21:56
Just catching up with your cancer diary. Everything seems to be going ‘smoothly’ if that’s the right word to use 🙂 I have Fibromyalgia and often feel fatigued – not I’m sure as badly as you but people do not understand – tell you to try and get a ‘good night’ – no such thing for me I’m afraid. I tend to try and soldier on on when others are around. Anyway this is about you and you have so much more to contend with. Hope all goes well on Friday and the aftermath not too dreadful. Take care. Anne x
