Our Story

Fifth Chemo Done

Well, here we go again. I had my fifth chemo yesterday. While the last one was harder than the previous sessions, I still felt well enough to go ahead on schedule. This one was a little different in that Ellie joined us as she had a presentation with the My WiSH charity in recognition of her achievement of raising over £2,000 to go towards the MacMillan unit treating me. Well done Ellie and thank you to every one who supported her head shaving event.

As our appointment was at 12:30 we ended up having a family picnic in the chemo day room, while I was being filled with more ‘poison’, as our consultant put it! It was a warm sunny day and bizarrely was actually quite a pleasant day out.

When we have been for previous sessions it has been really busy, but oddly yesterday was very quiet in comparison, with lots of empty chairs. We saw Lisa, the clinical trials nurse to discuss how I am feeling now that I am taking the metformin twice a day. She gives me a detailed lifestyle questionnaire to fill in, which goes through a whole range of topics including emotional and physical side effects. I won’t bore you with the actual questions, but some are fairly general ones covering pain and fatigue etc, but there are also a number of more intimate queries covering bowel habits, depression, sexual activity, appetite, urinary problems and so on! They want to know the whole picture so they can gauge whether the treatment is suitable to introduce as the normal process for prostate cancer in future. So I feel happy that I am doing my bit for research. I also have my weight measured and this gone up a little since I started treatment in January and I have developed what Lisa described as a steroid ‘moon face’. I have definitely noticed a round face looking back at me in the mirror and my collars have become a much snugger fit. Hopefully I will regain my handsome ‘chiselled’ look, as Bim put it, when I have stopped taking them. (I think she may be overstating things a bit there!)

We always ask for the latest PSA results at our chemo sessions and we are pleased to see that it has come down again to 1.2. It can’t drop much further, so we are happy with where it is now. The main aim is to try and keep it low for as long as possible. After the chemotherapy course has finished this will be through regular three monthly hormone implants and the ongoing metformin treatment.

There will be cake!

The next chemo session in three weeks time will be the last, and while it has not been anyway near as difficult as I had feared so far, I have to say I am looking forward to finishing the process. All the nurses and chemo team in general have been wonderful, so we will definitely need to celebrate the last session in the best way we know how, with a selection of homemade cakes and biscuits as a thank you to all of them.

I don’t feel too bad immediately after my chemo, so we have developed a chemo day tradition of a jacket potato supper. Last night we had Dan and Ellie with us so I fired up our Kamado Joe charcoal oven barbecue and had lovely crispy, smokey potatoes which was a good way to end the day.

Just a few photos from last Friday night.

We were told at the beginning of the chemotherapy that the side effects become more pronounced as you go through the treatment. Indeed our consultant said that the previous two gentlemen in my position only managed four treatment cycles out of the six that are normally prescribed.

Up until now I have felt that it has all been quite manageable with a repeating pattern of, first week feeling drugged, second week tired, and then recovering during the third week in time to start again. However I am now halfway through my fourth cycle and I am finding it much harder than the previous sessions. This is the first time that I have actually felt nauseous during the first week, but the main difference I am noticing is the tiredness. This isn’t so much feeling sleepy, but an unnatural lethargy with absolutely no energy to do anything. If I do try to carry out a fairly simple task, I find that I break into a sweat and my head begins to thump! I end up sitting down again pretty quickly.

It’s frustrating to be feeling like this and I will discuss it with the consultant at our next appointment, but I have read a bit about it and I think I understand what is happening. Docetaxel, which is the chemotherapy drug I am taking, is designed to kill off fast growing cells, wherever it comes across them throughout the body. Clearly this is mainly aimed at the cancer cells but it also destroys other cells including bone marrow which is responsible for producing red and white blood cells. I think the tiredness I am feeling is down to being anaemic caused by a reduced red blood cell count.

SCIENCEY BIT

Red blood cells are responsible for carrying oxygen around the body without which your body cannot function correctly. A single red blood cell last for about three months in the body, before it is replaced by a new one made in the bone marrow. This is a continual process with new ones being made at the same rate as old ones dying off. As long as this is kept in balance then the body keeps ticking along nicely!

With the chemotherapy drug damaging the bone marrow every three weeks, the body is unable to produce the blood cells at the same rate as they die off naturally. When you reach 12 weeks into the treatment you start to reach a low point in red blood cells and so become more and more tired.

I have every intention of finishing the full six treatment cycles, but I think things are going to get harder from here on. One thing is for certain, I am going to need a lot more sympathy from wifey!

We are looking forward to seeing Ellie when she comes back from Manchester. She has done incredibly well by raising nearly £2,000 for the My WiSH charity. Well done Ellie.

Well done Ellie. We are very proud of you. You have raised more than £1,700 so far. Amazing!

We have realised that we’ve been a bit remiss in not updating the blog in three weeks since the last chemo session. This can be taken as good news as all is going well; it’s business as usual, and we’re recognising the pattern of side effects and how John feels is consistent after each chemo session. If anything he is beginning to feel more tired for longer, but this is to be expected and does not give cause for concern. In the couple of days before a chemo session he feels almost back to normal. He continues to go to work and has managed to do some almost full days, much to the surprise of the medical team. In addition to the side-effects that we’ve mentioned before, he also now gets particularly dry hands and has found that he can’t operate his tablet without using a stylus. That’s a side effect that wouldn’t have been a problem just a few years ago. We have also noticed that the hairs on his legs are falling out, and he is getting a bit of a ‘steroid bloaty’ face. Or perhaps he’s just put on a little weight?
On Tuesday we had a meeting with the clinical oncolgy nurse, who is happy with how he is responding. The hospital has now recruited a second man to take part in the Metformin trial alongside John.
When we arrived at hospital today we thought we’d take a selfie to attach to the blog. We failed miserably, so John decided to produce a graph (oh, how he loves Excel) to show the progress of his falling PSA levels (1.36 today):
On Sunday we had friends (Ruth and Russell) visit us who also were given a cancer diagnosis in the same week as John. Being in contact with Ruth and Russell during treatment has been great moral support to us all. Russell has received aggressive treatment which has necessitated being fed via a stomach tube. He has been unable to eat a meal in almost 4 months, but is now gradually reintroducing some small items of food. John cooked a perfect lunch which Russell was able to eat, enjoy and appreciate the flavours which he has missed since his treatment started. It was quite a momentous occasion which we were honoured to be part of. Onwards and upwards for Russell’s recovery.
Ellie will be shaving her head on 17th March to raise funds for the My Wish charity at West Suffolk Hospital. She has already far exceeded her target and has currently raised £1500, so this will most likely go higher still when she shakes a donation bucket under her fellow student’s noses in the uni bar next week. Dan’s fundraising for Cancer Research has also raised over £1500 – fantastic totals for both charities. Thank you to everyone that has supported us so generously! xx
My news is that I left Huntingdonshire District council last week after 15 years. Friends and colleagues gave me a wonderful send-off, and I will miss them all enormously. I will not, however miss the 120 mile a day trip to get to-and-from work. I start my new post in Bury on Monday – just 8 miles from home which will be quite a treat. The job came just at the right time as work/life balance is now so important.