Tuesday 3rd November 2015
Not Pulling Out of This Yet
I am now over half way through week 3 of the final cycle of my chemo, and feeling a bit fed up, because normally by this stage I’m really picking up and able to enjoy feeling more normal in week 3. I continue to feel wiped out and have a horrible taste in my mouth. It’s as if the chemo knows it’s been the last time and is reluctant to depart my system and leave me in peace! I know, I know, it’s been doing a good job, and I must continue to remember that, and not fight the chemo but fight the cancer, and be thankful! It’s hard though, because I am used to feeling better by this stage and had really hoped I’d be doing some stuff this week.
All I seem to have managed is to get some photos back on my early blog posts. They disappeared as a result of my letting my Photobucket pro subscription lapse. When I started my blog, all the photos were linked to that site, but more recently, I’ve uploaded them directly from my hard drive so they are more secure and reliable! No more trouble with broken links. I could do this repair job from the comfort of the recliner but I haven’t had the energy even to do any drawing.
C’mon, chemo, time to leave! I want to start cooking again, and doing all sorts of other fun stuff!
Monday 9th November 2015
Getting my Life Back
At long last I am starting to feel better! The final chemo just over three weeks ago certainly made its presence felt and the effects went on well into week 3 of the cycle, which was unusual because with previous treatments, by week 3 I was always feeling a lot better. It was doubly surprising that it went on so long, because the final treatment, like the penultimate one, was at a reduced dose. I am still getting peripheral neuropathy, mostly in my feet now, which is strange because I’ve had more trouble with it in my hands previously – it seems to be there a lot of the time, giving me feelings of numbness and pins and needles, particularly in my toes, and it seems unrelated to cold, too. I shall mention this to the oncologist when I next see her.
I have now started to pick up the threads of my life again, doing some domestic tasks. It may sound funny, but I am so enjoying this! It is making me feel a lot more human again, and in control of my life. My hubby has been so wonderful looking after me all this time but I really feel it’s high time I took back a lot of what he’s been doing, and started looking after him again after so many months.
Here are the “firsts” in getting my life back again!
Thursday: I did my first batch of laundry. Since going into hospital, my lovely cleaning lady has been doing this for me, apart from the odd bit of hand washing that I’ve managed to keep up with.
Friday: First lot of ironing.
Saturday: I got up and got my own breakfast for the first time. Since my operation, my hubby has been bringing me breakfast in bed. First washing up – I did the breakfast things! A gentle introduction. I also finished the ironing. I sorted the larder cupboards in the kitchen and made a list of what we’ve got, and what we need. I started making my first shopping list for the online order I shall be doing in the coming week.
Sunday: I went to church for the first time since May, when I had recovered sufficiently from my operation, just before I started my chemo. I was quite overwhelmed by the lovely welcome I received – everybody was surprised and delighted to see me back and I got a LOT of hugs! Everyone said how well I was looking. I would have easily forgiven them for forgetting me altogether, it’s been so long since I showed my face in the place! I washed up the evening meal dishes. Soon I will be cooking the evening meal, too!
Monday (today): I sorted the freezer and defrosted it. Much as I hate having to throw food away, I did have to throw away a bit, because it was too old. Once I’m back in the driving seat as far as the cooking and shopping are concerned, I shall have a proper idea of what we’ve got, and what needs eating first, etc. etc. and this won’t happen again. I have also re-started my diet – I am on the 5:2 diet, where you restrict your diet to a maximum of 500 cals for two days of the week and eat normally for the other five. I had to abandon this, on the advice of my surgeon, in advance of my operation, in order to keep my strength up and allow my body to recover. Although I have gained some weight during this time, I have managed to keep it on a more or less even keel, which I am pleased about, but now it is time to resume the downward trend and hopefully to reach my target weight by next summer.
During the coming week, I’ve got the fridge to sort and clean out, and the small freezer (part of the fridge-freezer in the kitchen). I also need to clean the hob and possibly the oven but I may ask my cleaning lady to do the latter lol!! There’s a box of food out on the counter where my hubby has been putting his food shopping for easy access for his cooking, and this needs sorting and the stuff putting away, and then I can clean that counter, including all the crumbs from the toaster! Tomorrow morning I shall finalise my online shopping list and then do the order in the afternoon, and request the delivery for Wednesday, as I used to do before. I am hoping to cook the first evening meal on Wednesday.
I am also trying to be good, and going to bed earlier than I am used to, so that I can get up earlier. The trouble is, my M.E. messes with my internal clock, and I tend to be mentally alert in the small hours, and do not feel at all ready to go up at midnight! I am trying to go up to bed at 12.30 a.m. at the latest. Since I have been doing this, I have not been sleeping well (waking frequently) which is what always happens if I go up before I feel ready, but this time I am determined to try and educate my body and put up with the wakefulness until it settles down into a new routine.
This whole cancer journey has brought me to a new start in my life, and I am determined to set up good habits from now on. I seem to be at my best for doing things in the mornings, so I am putting my feet up in the afternoons and evenings and not overdoing things. I have been needing a sleep in the afternoons but this may not last forever as I gradually recover my strength.
Wednesday 11th November 2015
Hospital Appointments, and Needing to Pace Myself
Some more firsts: yesterday I did my first online grocery shop, and today it was delivered. It was a big shop, because my larder was fairly depleted, and I also needed new ingredients for the recipes I am keen to try.
After putting the stuff away from the delivery, I suddenly ran out of energy and my idea of cooking supper bit the dust, and my hubby was back in the kitchen again… He is very good, and willing to take over when the need arises, I am glad to say. A bit frustrating, though. I am still very limited by my small reserves of energy.
Yesterday I also cleaned out the fridge freezer – very glad to have done this before the grocery delivery.
I have several upcoming hospital appointments:
Thurs. 12th Nov. (tomorrow): Pre-assessment for my procedure next week.
Tues. 17th Nov.: Appointment with the support garments lady in the stoma clinic.
Wed. 18th Nov.: Investigation of my rectal stump under general anaesthetic, by my surgeon, Mr. Pullan, in the Day Surgery Unit. His registrar was unable to make a thorough investigation at the end of October because it was too uncomfortable.
Thurs. 19th Nov.: CT scan.
Fri. 27th Nov.: Bloods and port flush on the Ricky Grant (chemo) Day Unit.
Mon. 30th Nov.: Oncology appointment, when I am hoping to get the cancer all-clear!
Yesterday I counted up just how many appointments I’ve had at the hospital, and not counting my stay in hospital for my surgery, it has so far been 43! Add on the ones to come that I know about and it’s 49! I have spent a great deal of time there, and my hubby has driven me there every time, and been so supportive throughout.
Following her telephone call yesterday, I had two letters in the same envelope from the appointments clerk at the hospital today, one relating to my pre-assessment appointment tomorrow, and the other to the procedure itself, together with a leaflet detailing what to expect and how to prepare. I’ve got to turn up at 8 a.m. which is pretty early, but I am allowed some breakfast. I will have a fair bit of waiting around, seeing a nurse and the surgeon before the procedure, and then I will have to put on a hospital gown, and my dressing gown and slippers which I have been asked to bring along, and given a general anaesthetic.
Mr. Pullan is going to have a good look inside, and clean out all the mess, and try and see what is going on and what has been causing the problem of the mucous discharge and pus, and the bleeding, but I think the latter is probably most likely to be an effect of the chemo, which can damage small delicate blood vessels – the bleeding has cleared up since I finished my chemo, which rather bears this out. He will be able to keep the proctoscope in for long enough to do this because I will experience no discomfort this time.
Even if I am told subsequently that there is nothing to worry about and the mucus is just something I am going to have to live with, I shan’t mind, because I will be reassured. I am impressed that they have taken my concerns seriously, and are prepared to investigate, even if all that is required is a bit of reassurance. If he does find a reason for it, there is every likelihood that he will be able to do something to help.
This has been the pattern throughout – nothing I have said, however trivial I may have believed it to be, has been poo-pooed, but taken seriously and acted upon.
Finally, regarding my peripheral neuropathy (a side-effect of the chemo), this has been more troublesome and longer-lasting after the final chemo than after any of the previous treatments. Also unusually, it is affecting my feet, which have generally been unaffected throughout, as long as I didn’t walk on any cold surfaces and kept my feet warm – it was triggered by cold. I have noticed that I have been getting ongoing symptoms (partial numbness, tingling and pins and needles in the soles of my feet and toes) quite a lot of the time, unrelated to temperature, and this morning I discovered something extraordinary. I had my first bath for quite some time (I have been showering all through the summer, and I had also lent my bath lift to someone, making it impossible to bath anyway) and the hot water triggered the neuropathy in my feet, big time! This was quite a surprise, and something I need to mention to the oncologist when I see her at the end of this month. It was her concern about peripheral neuropathy that caused her to reduce the dose for my final two treatments, and I certainly didn’t expect this. I am hoping that it will disappear eventually, although there is a danger that it can become permanent – someone on the Inspire forum says he still suffers from it in his feet, two years on from his chemo. I’ve got to hope for the best, though.
Wednesday 18th November 2015
Rectal Stump Examination
We turned up at the hospital at the appointed 8.00 a.m. – an early start. I had an appointment with the nurse first of all, who provided me with TEDs (the elasticated stockings designed to prevent DVTs – deep vein thromboses which can occur when having an anaesthetic and operation). She went through a checklist regarding my general health – all of which, and more, had been covered at my pre-assessment, but I didn’t mind, because it shows how seriously they take it, and how well they look after us. I then saw the anaesthetist who covered some of the same ground, and explained what they were going to do. I asked whether the anaesthetic could be administered via the port-a-cath, but he said they didn’t usually like to do this because of the risk of infection, and any anaesthetic remaining in the device. I said that I could not tolerate having a cannula in my hand as it was extremely painful, and requested it in my arm instead, which he said was acceptable.
There was another wait, and then I was called in, and we went into a side room where I could leave all my stuff, including my wheelchair – the original plan was for my hubby to take this away with him as I was reluctant to leave it unattended in the hospital – it is an extremely expensive piece of kit with its power-assist system fitted, and also, if it is manhandled by people who are not familiar with it, they are likely to damage it – this has happened in the past. I was assured that nobody would be going into that room in my absence until I was ready to return.
After I had changed into the hospital gown, another nurse appeared and helped me onto the bed and put the TEDs on for me. Since I last had them (for my major surgery in March), they have improved the system – they now have a sock-like thing made of slippery material that they put on your foot first, and then slide the TED over this, which makes it a lot easier to put on, as they are very tight. They then pull the sock off through the hole in the toe of the TED, and pull it up to the knee as usual.
I was then wheeled off to the anaesthetic room where I met up with the anaesthetist again, and he inserted the cannula into my right elbow where there is a decent vein. He administered the anaesthetic and the next thing I remember was waking up in the recovery ward, being given oxygen and told to breathe deeply. Hartmann’s solution was administered via a drip (for fluid and electrolyte balance) for a short while. I don’t remember too much more until I was back in the side room again where I had left my stuff. I was left to recover a bit more, and then they brought me some tea and toast – I had not eaten since the previous evening and was ready for this.
I experienced very little pain from the procedure – only a slight ache and discomfort which soon passed, well before I left for home.
Once I was dressed, Mr. Pullan, the surgeon, came in to tell me how it had gone. He said everything went smoothly, and reassured me that there was nothing seriously wrong. There was a little granulation tissue formed around the area where he had stapled off the stump, and this was probably the source of the inflammation and production of pus and mucus. He said he cleaned the whole thing out well, and I might expect to see a little bloody discharge over the next day or two – in fact I noticed this only once, later in the day once I was home. Since then there has been nothing – no blood or mucus. He said we may need to repeat this process in the future should the problem recur, and he would be seeing me again in six months to review the situation generally.
I am highly relieved that the news was so good. I anticipated there being some ulcerative colitis in the stump – before my colon and most of my rectum were removed, the colitis was present throughout. Mr. Pullan said he would be monitoring this. My major concern was that there was cancer there, but Mr. Pullan was able to reassure me that this was not the case.
I was a lot more nervous about this procedure than I had been about my major surgery, which surprised me a lot, but my hubby said that this was only natural, because with the surgery, we knew the reason for it, and what the outcome would be, but with this procedure, we did not know what to expect, and the uncertainty would naturally make me more anxious. I didn’t think it was as cerebral or logical as that – somehow I was having a more visceral response to it which I could not explain.
Anyway, it is all over now, and I have been reassured that there is nothing seriously wrong, and I can deal with any further production of mucus without further worry.
When we got home, I went up to bed and my hubby resumed his kitchen duties for the rest of the day, and brought lunch, and then supper, up to me on a tray. I stayed there for the rest of the day and slept for much of the afternoon as the effects of the anaesthetic wore off. I felt extremely weak and unsteady on my feet whenever I got up. I did not sleep well during the night (probably having had too much sleep during the day) and ended up reading for over two hours during the small hours, but was able to get up at a reasonable hour in the morning, and felt tons better.
Thursday 19th November 2015
Back Through the Stargate Again
This afternoon I went in to the hospital (third day running!) for my CT scan. The first time I had this was shortly after my cancer diagnosis, and my first impression of the scanner was that it looked just like the Stargate in the TV series “Stargate SG-1” – a portal through which the team could pass to visit distant planets. See my earlier entry (30th January) for pictures!
This time, I was not given the dreadful aniseed contrast fluid to drink, but a jug of water which had to be consumed over the next 45 minutes. I was told that the contrast medium was now administered intravenously.
On arrival I was given a brief questionnaire to fill in, about my general health, allergies, etc. etc. and then given the water to drink. One this was finished, I was taken into the scanner room, told to lie on the scanner bench, and the cannula inserted in my arm. I was a bit concerned that they might not find the vein, having had the same procedure yesterday, and there was some bruising around the site, but all was well.
The cannula was flushed with saline, and then the contrast medium was administered, causing the usual flushing sensation and the feeling that one had wet oneself! I was then posted through the scanner a couple of times for the test run, obeying the recorded instructions to breathe in, hold my breath as the scanner worked, and then breathe normally.
The radiographer and the nurse returned, made a few adjustments, and then retired again as the actual scan took place. Nothing different from last time.
I was soon out, and told to return to the waiting room for about 10 minutes, after which I was called again, and taken into another room where the nurse removed the cannula, and then we were free to go.
We now await the results, which we will no doubt hear when we next see Dr. Lo, the oncologist, on 30th November. I have to have bloods taken on the Ricky Grant Day Unit on 27th November, and she will have those results as well. Hopefully the verdict will be that I am cancer free, and that they can then remove the port, and I should be fine.
Saturday 21st November 2015
Peripheral Neuropathy
Since finishing my chemo over a month ago, my peripheral neuropathy has been getting steadily worse. This is one of the side effects of oxaliplatin, the chemo I was on, and the effect they are most concerned about, because there is a danger that it can become permanent. Dr. Lo, my oncologist, said that the only way to mitigate this was to reduce the chemo dose, which she did for my final two treatments, for this reason.
During the course of the treatment, the PN was triggered by touching anything colder than myself. It was worst during the first week of each cycle, gradually diminishing in week 2, and virtually or completely absent by week 3. When at its worst, I protected myself by wearing gloves, and being careful to avoid walking on cold floors with bare feet. It was always worse in my hands than in my feet, probably because my feet were better protected against contact with cold.
Since the end of the chemo, however, the PN has intensified, and it no longer seems to be affected by cold. It is present all the time, and it feels different too. My fingertips, my toes and the balls of my feet are now numb, and my feet especially are quite tingly – it is worse in my feet than in my hands. I am experiencing a burning sensation in the soles of my feet today. Strangely enough, a week or two ago I decided to forego my usual shower and have a soak in a hot bath instead, and to my amazement this set off the PN in my feet big time, with major pins and needles! So, contrary to previous experience, it was triggered by heat, not by cold.
This is something I am definitely going to be discussing with Dr. Lo on 30th November at my next appointment.
Friday 27th November 2015
Bloods and Flushing at Ricky Grant
Today was my appointment at the Ricky Grant Unit (where I had my chemo) for my port to be flushed and for bloods to be taken in advance of my appointment on Monday with Dr. Lo. As soon as I arrived, Emma (my favourite receptionist) who was on the desk, came round and gave me a huuuuge hug! What a lovely welcome! While I was waiting to be seen, she and I had a lovely chat. Everyone was very pleased to see me and they all said how well I looked, and asked how I was. It is such a friendly place.
I asked Emma if there was an email address I could send that wonderful photo to – that my hubby took just after I’d finished my chemo – and she gave me her work email, and I have now sent the photo on, so that she could show it to everyone.
No problems with flushing the port or getting blood. The port has to be flushed every six weeks if it is not used, and I have now got an appointment for early January for this to be done again, if I still have the port in place – after Monday we will know whether it will still be needed or not.
Very tired on my return so I had a good sleep this afternoon. I have been very tired all week, ever since my marathon 3-days-in-a-row appointments last week, and my creative mojo has fled (hopefully temporarily) – I haven’t been pushing things but resting, and continuing with the cooking which I am enjoying. I think I am feeling a bit unsettled in advance of Monday and the results of my scan, which is making it hard for me to concentrate on anything much.
Monday 30th November 2015
Oncology Appointment and the Result of my CT Scan
We saw Dr. Lo, my oncologist, today and she confirmed that the result of my CT scan shows that there is no sign of any cancer in my body any more. My hubby is feeling quite emotional about it all, but so far I’m not really feeling anything, which is a bit weird and unexpected – maybe it needs time to sink in. We are planning a celebratory meal (or two!) over the coming days, by which time I hope I shall be feeling more over the moon about it!
Part of how I am feeling is due to the fact that I am still suffering pretty horrendous peripheral neuropathy, and also, I have a friend who also saw her oncologist today, to get the result of her scan – I have not yet heard back from her, and I am anxious in case she has had bad news and is too upset to contact me! I know I shouldn’t worry, and it may just be that she is fine, and too busy out celebrating! Still, I can’t settle till I know whether she’s OK or not.
Dr. Lo says that I have to see her every six months for the next two years, and then for the final three years, once a year. I have to have a scan in a year’s time, and occasional blood tests, and if all is well at the end of the five years, I can consider myself discharged and cured! It all takes a bit of getting used to after everything I’ve been through this year.
It is also going to take a while to get used to not going to the hospital all the time. Not counting my stay in hospital for my surgery back in the spring, since this journey began back in January, I have now had 49 appointments! The place has become like a second home and suddenly not going so regularly is going to feel very strange indeed. I have received such amazing care, given with friendliness and even love, and part of me is going to miss being the object of such attention. I think I am looking at a period of readjustment from now on.
I feel so strange about this – my reaction is not at all what I expected to feel. I am wondering whether other newly declared cancer-free people feel this way? I almost feel guilty for not feeling completely over the moon about this, and a bit confused that there should be any conflicting emotions at all! I think there may also be an element of survivor’s guilt somewhere in there, too – knowing only too well that for some, my good news may make certain people feel worse about their situation, and I would hate to be responsible for that… Maybe I’ll have a more sensible reaction once I’ve had a chance for this to sink in a bit.
Peripheral Neuropathy
While having my chemo (oxaliplatin), I experienced the normal cold-induced peripheral neuropathy which was most acute at the beginning of each cycle and by the third week, had virtually disappeared.
After I completed my chemo just over six weeks ago, I began to develop the persistent sensory peripheral neuropathy experienced by a significant percentage of people. This was quite a surprise to me until I did some online research into it. This PN is of a different quality. To start with, it does not seem to be induced by cold contact, but is present all the time. Also, during my treatment, I had relatively few problems with my feet, as long as I protected them and did not walk barefoot on cold floors – I experienced it mostly in my hands. Now, however, I am experiencing it more severely in my feet. The soles of my feet and especially my toes, are now numb and tingling all the time, as are my fingertips. The PN affecting my mouth and throat is no longer present since stopping the chemo; this does not seem to feature in the persistent variety.
Since the onset of this new type of PN, it has gradually become worse and more noticeable, which is also apparently quite normal. Most people seem to experience a worsening, after which it either decreases and ultimately disappears, or becomes permanent.
On Saturday afternoon I noticed something new. I was sitting on the recliner at home, and bent my head forward for some reason, and suddenly became aware of a brief explosion of electric-shock sensation in both feet. I repeated the movement with my head, and there it was again. I was aware of this neurological sign from my researches into such things several years ago when I was in the process of reaching a diagnosis of my M.E. This effect, known as Lhermitte’s Sign, is very common with people with M.S., and it often affects the whole of the spine and all four limbs, so I reckon I am getting off lightly with it affecting only my feet! I did some further online research and found that it can be caused by a variety of conditions and injuries, including the neurotoxic effects of certain chemotherapy drugs, such as oxaliplatin, but this latter scenario is quite uncommon.
Recently when I saw the stoma nurse at the hospital, I mentioned a concern I had about problems with emptying my bladder completely, and she put it down to the aftermath of surgery, when various muscles had been interfered with, and that it should pass in time. During the course of my researches into Lhermitte’s Sign, I found it associated with this very problem.
I mentioned both these problems to Dr. Lo today, and the fact that both are associated with damage to the dorsal root ganglia – where the spinal nerves connect with the spinal cord, part of the central nervous system. Interestingly, there is no involvement with the rest of the CNS (the brain) because of the effectiveness of the blood-brain barrier protecting the brain from the platinates in this type of chemotherapy. The dorsal root ganglia have no such protection.
My oncologist said that she had never had a patient who experienced Lhermitte’s, but one of her colleagues had had one patient who did. It is pretty uncommon, and does not feature hugely in the literature.
She said I should monitor this, and the PN in general, and if it continued to get worse over the coming months, and if it did not diminish in a few months’ time, I should make an appointment to see her again to discuss it; she said it may be necessary to get the neurologists involved. I wondered whether my existing neurological condition (M.E. – Myalgic Encephalomyelitis) might have a bearing on why I should experience these rare effects. Speaking to a member of our church congregation yesterday, who is a doctor, she said she had never had a patient with M.E. who had also been treated with oxaliplatin, and did not know how the two might interact with one another.
When I was undergoing neurological tests prior to my M.E. diagnosis, when they were eliminating other diseases such as M.S., my nerve conductivity was tested with evoked potentials (the results were normal) – people with Lhermitte’s and an atonic bladder resulting in urinary retention, caused by damage to the dorsal root ganglia, exhibit abnormal results with slower nerve conductivity on this test.
There is every hope that these problems will resolve in time, but we know that quite a significant percentage of people experiencing neurological symptoms after stopping oxaliplatin and other platinates do not recover. I can only hope I am in the right percentage!!
Trust Shoshi to be different…
I find all this absolutely fascinating.
A happy thought struck me today, which made my oncologist laugh when I told her. We know that heavy metals are neurotoxic. I am just glad they didn’t pump me full of lead – a base metal – but went for platinum, which is the most precious – it’s more expensive than gold! Only the best for Shoshi!!
