Thursday 2nd July 2015
Oncology Appointment
I had my pre-chemo appointment with the oncologist this morning, following my vampire’s appointment at the Ricky Grant Day Unit, which didn’t go too well! The nurse first attempted it using a small gripper needle, and while she was able to flush out the port-a-cath with Hepsal with no problem, the blood simply would not flow… She called a colleague, who tried with a large sized needle and I certainly felt that go in! Again, easy flushing but no blood. She got me to tip my head right back and slightly to the left, to stretch things out, and also to cough, but still nothing, and I was starting to get pretty uncomfortable in that position! She then suggested that I got on the couch and she would lay me down so I was flat, and would try again with a medium-sized needle. Not so bad inserting that one, and just when I thought things were really going pear-shaped and the port was failing or worse, the blood started to flow just fine! So all was well. Her colleague came back in again, and they agreed they would make a note of the size of needle to use, and also to get me lying down.
I can well understand why the practice nurse at the surgery, or the district nurse, cannot extract bloods from the port and I have to go to the hospital for this. It requires special training which the regular nurses have not had. It’s a bit of a pain because it means an extra trip to the hospital and I’m very conscious of my poor hubby being obliged to take this trip so often on my behalf, but at least they are happy for it to happen on the same day as my oncology appointment, so we can kill two birds with one stone.
I picked up another tube of local anaesthetic ready for prepping the skin over the port prior to my chemo tomorrow, and we set off for Oncology.
Today I saw Dr. Claire Dyke, Dr. Lo’s registrar. I told her exactly how I’d been during the last three weeks, and that I could feel the effects of the chemo when there was still an hour of infusion to go. All the side effects had been more severe, and longer lasting, and it was only a couple of days ago that I started feeling well enough to do anything other than lying on the recliner. She had a quick word with Dr. Lo and reported back that they would reduce tomorrow’s dose by 10 percent. The dosage is calculated according to body weight, but every individual is different and some people are more sensitive to the treatment than others, and it’s only by trial and error that they can get it right. I am hoping that this will make a big difference to how I feel after tomorrow’s treatment.
I asked whether the infusion would be more dilute, or the treatment time would be shorter; she said it would be a smaller amount, but the treatment would last the same four hours.
They had planned on postponing my next oncology appointment until the treatment after next, but in view of my adverse reaction last time, they have made another appointment for me in three weeks’ time, the day before my fourth treatment.
I asked Dr. Dyke if they knew how many treatments I would be having. All I had been told was that it would be every three weeks for six months, and the number of treatments would therefore depend on when they decided to stop them. She said it would be a total of 8 treatments, which I was delighted to hear! I had calculated at least 9 or 10! It’s very good to know that a definite end is in sight, and after my next treatment in three weeks’ time, I will be half way through! That doesn’t sound so bad. Later I worked it out that the final treatment should be on 16th October, which is a lot better than the mid- to end of November that I had been expecting.
In view of the fact that the nausea was so bad after the last treatment, Dr. Dyke said I could double the domperidone dose, and she gave me a prescription for this, and for some more loperamide to help with the over-production of very runny output from Kermit, my stoma.
More news after tomorrow’s treatment.
Saturday 4th July 2015
Third Chemo Treatment
Yesterday I had my third chemo treatment. When they again inserted the needle into the port in order to connect me up for the infusions, the nurse was getting a good back-flow of blood, and said that the flushings I had had the day before, and now, seemed to have resolved the problem.
The treatment proceeded as before, and again, despite the lower dose, I started to feel the effects during the last hour of infusion, and by the time they had finished with the final flush, I was feeling quite poorly. It wasn’t as bad as last time in that I didn’t have to take to my bed on our return home, and I managed to eat a small supper.
The peripheral neuropathy is bad again, so I have been wearing my gloves ever since the treatment ended yesterday. My hubby has been warming all my food and drink as well – even at room temperature it is giving me the feeling of swallowing sand. This should pass off in a few days.
Last night I gave up typing on the computer as a bad job. My hands were seized up and felt as if they belonged to someone else, making typing well nigh impossible, with so many typos that I had to be correcting every word at least once! I left it off till this afternoon, and when I started it was just as bad, but my hands gradually loosened up and my typo level is now more or less back to normal!
This morning I didn’t get up very early but rested half the morning in bed. When I got up I felt so much better that I was able to spend an hour or two in my studio.
Towards lunch time I suddenly caved in with exhaustion and feeling shaky, and I also felt rather nauseous, so I came down and took a single dose of domperidone – I didn’t want to overdo this because I was already taking my twice-daily dose of ondansetron. After a very light lunch I felt a lot better. I have been resting on the recliner all afternoon watching TV and DVDs, and catching up with my emails etc.
Generally speaking, I have already started feeling a lot better than immediately after the second treatment, so hopefully I shall have a much more productive three weeks this time! I am also feeling much more upbeat because the effects do seem to be less severe than last time. However, some effects take a few days to develop, and things can change very rapidly, so I am trying to enjoy the “ups” and be ready for the “downs” when they come, and trying not to worry too much about the future.
Thursday 23rd July 2015
Doing Better This Time
After a week of feeling poorly following treatment #3, I picked up during the second week and have had a pretty good fortnight all told, and have been able to do some art, which is great. I did think to begin with that reducing the dose by 10 percent wasn’t making any difference as I felt very poorly during week 1, but the effects passed off very much more quickly, and I can certainly live with that.
I went in to the Ricky Grant Day Unit today to have bloods taken through the port again, as usual before each treatment. This time, the port behaved perfectly and the blood flowed just fine, with me lying on the couch and them using the 1-inch (medium sized) gripper needle.
After this we went down to the Oncology Department and again saw Dr. Dyke, the registrar – Dr. Lo was apparently away on a conference. Next time I have to see her on the Monday so that will mean 3 visits to the hospital in one week! My poor hubby…
She asked how I’d been since the last treatment and I was able to report that after the first week, things had improved no end. She said they would keep the dose the same for tomorrow’s treatment, but if I was affected badly, they have a little leeway and can reduce it again for the next one if necessary.
I am very impressed with how much they listen to what one has to say. We were talking generally about different effects and I mentioned the mucous discharge I have from my rectal stump – Mr. Pullan had told me that this would go on possibly for many months. I have read that sometimes it never clears up; mucus is produced naturally in the colon and rectum and helps lubricate the passage of the stools, and it is absorbed by the stool and passes out naturally without one being aware of it, but in the absence of stool after the colon and most of the rectum have been removed, it can build up and be hard to pass because one cannot “bear down” in the normal way. If it accumulates and becomes hard, it can cause problems, and can also get rather smelly and unpleasant. The chemo certainly makes this problem worse. It is not there every day but I can feel quite uncomfortable with a severe ache in what remains of my back passage, and the urge to “go” and most times nothing comes out.
I mentioned to Dr. Dyke that I’d read that glycerine suppositories can help, and what did she think? She said she had not come across this problem before and asked when I was seeing Mr. Pullan again, but I wasn’t sure that I was going to see him again. I mentioned that I had a stoma nurse’s appointment next month and she suggested I discuss it with her. She then said she could phone her straight away if it would help, and she did! She came back to say that the nurse had suggested a medication called Micralax, which comes in 5 cc doses in a little squeezy sachet with a long flexible tube which you insert into your back passage. Dr. Dyke gave me a prescription for this and I have to use it twice a week. It should take between 5 and 15 minutes to work, and should dissolve the discharge, allowing it to flow away easily.
I am very impressed with the trouble Dr. Dyke took over this, phoning the nurse and arranging it all, and taking the problem seriously. If I hadn’t mentioned it, they wouldn’t have known and I’d have struggled on.
When I was waiting to have my blood taken this a.m. I got in conversation with a lovely lady who was just starting her first chemo, and I said to her that she must tell them absolutely everything about how she feels, and what effects she gets, even if it seems trivial or silly to her, or embarrassing – if they know about it, there is often something they can do to help that we are not aware of. We all have a tendency to “soldier on” and not make a fuss, but this isn’t a very good idea, and we need to realise that we don’t have to be heroes, and that they are all there to help us through this ordeal, and to make it the least unpleasant it can be.
When we got back home I was quite tired and needed to rest for most of the afternoon, but after that I was able to work on some art projects which I need to finish by a certain date. I am hoping to be able to do some more tomorrow. My treatment is a bit later than usual, starting at 1.15 p.m. so hopefully there will be some time in the morning to achieve something.
After tomorrow’s treatment, I will be half way through! That is a milestone! It occurred to me during this cycle that this whole thing is like a game of snakes and ladders. With each treatment one slides down a very long and very slippery snake, and then spends the next three weeks climbing up a long ladder, only to be confronted with another snake at the end of it! I know I SHALL win this game, though, and I am progressing gradually through the board. It’s a pity it’s not the game where you collect £200, though!!
More news after tomorrow if I feel up to it.
Sunday 26th July 2015
Fourth Chemo Treatment – The Half-Way Mark!
On Friday I went for my fourth chemo treatment. This is quite a milestone because it marks the half-way mark of my treatment. The light is definitely brighter at the end of the tunnel, and it’s nice to know that I only have four more snakes to slide down, and four more ladders to climb – the final one hopefully being the long climb up to a cancer-free life! From now on I think the time will pass more quickly as the end rapidly approaches.
I had been told to come in at 1.15 p.m. for my treatment, which was later than my usual 12.30 appointment. On Friday morning I was still in bed and my hubby had not yet brought me my breakfast and the phone went, and they asked if I could come in at 10.15 a.m. instead – the reason for this was that if I came in at 1.15 p.m. my treatment would run on too late, and they officially shut up shop at 6 p.m. I can’t imagine why they hadn’t thought of this before – they could have told me the previous day! I know how long it takes me to get ready and I knew there wasn’t enough time, and that we would be late, so I didn’t panic. We were only 5 minutes late but by that time somebody else had taken that slot and I had to wait for ages! I could have had another hour in bed… All day the unit was incredibly busy.
My hubby had an appointment at 4 p.m. which he couldn’t avoid. If I’d gone in as originally planned, this wouldn’t have been a problem, but after my treatment was finished around 4 p.m. I then had to wait till after 5.30 for him to pick me up. I therefore spent the whole day at the hospital and was unable to do anything else!
They have scheduled my next appointment for 10 a.m. which is fine, because if I know in advance that I have to be up early, I can be. I shall be home earlier, but of course feeling the effects of the chemo so the later part of the day will be useless as far as doing anything is concerned. I’d much rather go in the afternoon so I’ve got the morning free to do things, especially as I am likely to be feeling at my best right at the end of the three-week cycle. Still, it can’t be helped.
On Thursday I was given another MRSA swab kit – I was given one of these last time, and apparently it will happen every time now – new hospital policy.
There are three tubes each containing a stick with a cotton swab on the end and you have to take a sample from inside your nose, your throat, and your groin. They give you a small vial of saline to moisten the swab for the groin where the skin is drier. I handed this over, having done it before leaving home, and then they attempted to insert the gripper needle into my port – this time not so successful because they were using a smaller needle, and when I pointed out that I usually had the 2.5 cm/1 in one, they located one, and there was no problem after that. They flushed the port with saline, and then I was ready to go into the treatment area. They gave me the infusion of glucose and anti-nausea medication as normal, and then the chemo.
Like last time, I felt the effects during the final hour of treatment and felt pretty poorly. After they disconnected me, and I was waiting for my hubby, one of the nurses approached me and apologised profusely that they had forgotten to do my final flush – they can’t leave the glucose floating around and I should have had the Hepsal flush to get rid of this. They re-injected a fresh gripper needle into the port and did the flush with a syringe. No problem, except it hurt a bit more than usual because it was without the benefit of the Ametop local anaesthetic.
I felt really poorly all evening and I had a very early night and as a result, didn’t sleep well, and ended up reading and dozing occasionally from 3 a.m. onwards. Last night I also went to bed much earlier than usual, and again, woke in the early hours (4 a.m.) and had to spend most of the rest of the night reading!
Yesterday I felt quite a lot better, as I do today, and was able to do quite a few things, including spending some time in my studio.
Last time I crashed on the Monday and felt awful for the rest of the first week. I am hoping this won’t happen this time. However, I’ve been thinking about the reasons why I may have felt better initially and then felt the effects more severely – for the first couple of days I am on steroids and these are known to have a boosting effect and put you on a bit of a high. Once the effects wear off, it is likely that I will come down and feel worse.
Anyway I am hoping not to feel too poorly throughout the coming three weeks. I have a lot to do and am looking forward to working on several art projects.
Wednesday 29th July 2015
Progress After Treatment #4
After seeing Dr. Dyke (the oncology registrar) last Thursday, and being prescribed with the Micralax mini-enemas, I had to phone the stoma nurse on Monday because I had tried them twice and both times they really hurt… The first time I tried sitting on the loo and squirting the stuff upwards, and the second time lying on the bed and doing it sideways. It wasn’t the physical act of shoving in the tube which is pretty thin and soft, but I felt it immediately afterwards – it seemed to be the stuff itself. I determined both times to try and keep it in for at least 10 mins to do its work but both times had to give up and return to the loo after only 3 or 4 mins and get rid of it.
The stoma nurse said it was quite normal for it to be a bit painful – a sort of ache and a desire to bear down, but in my case she said it did sound as if the pain was more severe than normal. She said it may be a bit tender inside and recommended I left it off for the week, so I shan’t try again until Sunday.
I have an appointment with her on 17th August and we will discuss the problem further then. She said if I am still experiencing the same problems, it may be better in my case for me to have some glycerine suppositories which are more gentle. This is what I originally suggested to Dr. Dyke. We shall see.
Following on from Friday’s treatment, the weekend was quite good and I am sure that the steroids do make one feel better for the first couple of days while one is still taking them. From Monday I started to feel bad again and am not having that good a week. I am able to do a little in the mornings but after a small amount of effort, am completely flattened again and need to rest. I am experiencing the horrible taste in my mouth, and even water tastes horrible again, and the peripheral neuropathy is continuing to be a major pain, necessitating the wearing of gloves (sometimes 2 pairs if I am touching anything even slightly colder than I am). I am getting it in my feet as well, even through socks and slippers. The only way to deal with it is to keep very warm. After handling anything too cool, it helps to put my hands into hot water for a few minutes, dry them well and get the gloves back on pronto!
Last night I slept badly, with bad dreams (possibly more M.E.-related than chemo) and not helped by the fact that I was so wiped out yesterday evening that I spent the evening on the recliner asleep. I was trying to watch a DVD and slept through most of it – I kept rewinding and trying to remain awake, without success!
Nausea-wise, not too bad. I am taking the double dose of domperidone and it does seem to be working. It’s very bitter to take. Amazing that 2 such tiny pills can fill one’s mouth with bitterness! It is better taken with tea or juice than water. In any case, all drinks have to be warmed as I am still suffering the effects of “drinking sand” if I have even room-temperature drinks.
I am not pushing things this week. Just going with the flow and resting when I need to, and pottering in the studio or doing odd bits and pieces that have to be done (like this a.m. – changing the sheets on the bed, hair washing, some hand-washing) – this wipes me out by the time I’ve finished and so it’s rest, rest, rest for the remainder of the day. No point hassling – one just has to ride the tide and know that things will improve eventually.
I am hoping to feel better again next week.
Comments from my old blog
Anne8
July 2015 at 21:24
Hello Shoshi – I am struggling to know what to say as everything seems quite trite when I type it and I think to myself well that’s not going to help! I really cannot imagine what it must be like for you and your DH at the moment – I know though that as said before it is better than the alternative. Hope as you read this you have started feeling a little better. Reading your cancer diary and Shaz’s I count my blessings. I also get very cross with my elderly aunt when she complains about how hard done by she is – she is actually a very fortunate 90 year old – but also very selfish. So dear Shoshi I will continue to keep you in my prayers as always. Gentle, gentle hugs. Hang in there You Can Do It!!!!!xxx
