Our Story

We have just returned from hospital, having had John’s sixth
session of being poisoned. After feeling
pretty ropey after the forth session, he actually fared better after the fifth. He certainly has felt progressively weaker
and has far less energy, but fortunately he didn’t feel ‘ill’ during the last 3
weeks. He’s been able to a bit of
pottering in the garden, and has continued to cook. He hasn’t been into work for 3 weeks,
although one of the weeks he took as holiday as his ‘good’ week fell in the school
Easter break.

For those of you that have had the misfortune to know a
friend or relative who has gone through chemotherapy, you will probably
recognise the distinctive chemo pallor that comes with treatment. When we sit in the treatment room with the
other patients, all receiving treatment, there is a common look shared by
them. Oddly the hair loses all colour,
and we will be intrigued to see what colour John’s hair returns to, hopefully
in just a few weeks’ time. There is also
a washed out appearance to the skin, which is replaced by being very flushed
for 3 days after treatment (we’re not sure if this is due to the chemo drug or
the high dose of steroids which have to be taken). We’re tempted to contact Farrow and Ball and
suggest that they name two new shades: ‘chemo grey’, and ‘post-chemo puce’.

Another side effect has been extremely dry skin, including
hands and fingers. This has resulted in
a new first world problem – fingerprint recognition on his phone not
working. That wouldn’t have been an
issue just a few years ago.

We have eaten out very rarely since John’s treatment
started, as it’s been important to avoid any infections. Perhaps we’ve been over cautious, but we felt
it unwise to risk food poisoning from eating out. This week he thought he’d risk fish and chips
(deep fried, so should be as safe as it gets), and asked for a small
portion. He’s sure that he was given a
reduction in price as the assistant took him to be a pensioner. Perhaps there are some advantages to having
chemo?

At our last meeting with Dr Rimmer we were slightly
taken-aback when she suggested that further treatment may be needed in 6 – 12 months. This was sooner than we had expected, but of
course, there are no certainties and we will have to see what happens, and deal
with it then. Further treatment may be
another course of chemo, a different hormone treatment, or a new clinical trial
may be available. We will continue to
have 3-monthly visits with the clinical trial team, which we are pleased about,
otherwise we may feel abandoned when we don’t have the regular appointments
linked with the chemo sessions.

We have received great news: we have been invited to attend
an awards dinner in May to celebrate outstanding new builds in Suffolk. We are thrilled to have been entered in the
Best Craftsmanship award after 2 judges visited us recently. We were told that there was stiff
competition, which is encouraging to know that great individual homes are being
built locally.

We are expecting it to take several months for john to
regain his strength, as it takes 3 months for red blood cells to be produced
after chemo. We hope to get away for a
few days fairly soon though, as we have not dared to venture too far afield
since January. He has a timetable to
wean him off the steroids, as apparently if he were to stop taking them
immediately he’d have quite severe side effects.

So, we’re hopeful that symptoms will not be too severe over
the next few weeks, and he’ll start to regain his energy gradually.

First asparagus of the season!!

The chemo nurses all enjoyed their thank you cake. Apparently chocolate goes down well!

We are now just a few days away from my last chemotherapy
session which is due on Thursday this week. Luckily I have not felt too bad
over the last couple of weeks, just the usual tired and drugged feeling but
nothing worse. It gives me confidence that the sixth session will be
manageable.

We had our final meeting with our consultant, Dr Yvonne
Rimmer last week. She is moving to Addenbrookes in Cambridge next week. We were
both sad to see her go as we have built up a good relationship with her. It may
be a few weeks before her replacement starts so we are pleased that at least we
have got through the chemo before she left. It is always a bit of a reality
check talking to her as it does mean that we have to focus on the cancer and on
this occasion discuss the future options for when the current hormone treatment
stops being effective. Most of the time I think we both cope best by trying to
ignore it and carrying on with life as normally as possible. The positive point
from our meeting was that there are other hormone treatments available to try
at a later stage and it should be possible to have another round of
chemotherapy if that is felt to be suitable. I did feel a bit down for a while
after our meeting at the hospital. Luckily we had good friends, Gary &
Maurice round for dinner on Saturday night which was just what I needed to lift
my spirits, although this did leave me feeling a little hungover the next day!

We will let you know how session number six goes.

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!

Just a brief update this time.

Ellie has come home for a visit and has made a decision to join in the head shaving fun. On Friday 17th March she will be at the Centre for Alternative Technology in Machynlleth. Sometime in the evening, (most probably in the bar!) she is going to have her head shaved in aid of the my WiSH Charity and she will donate her hair to the Little Princess Trust.
The My Wish charity helps provide funds for the hospital whereI am being treated, and the Little Princess Trust makes real hair wigs for children with cancer.

Visit Ellie’s Just giving page here

Well, I really don’t have much to say this time! This last chemotherapy cycle has been pretty uneventful. Having had two full sessions there is now a pattern to how I feel. During the first week I have a drugged feeling, a bit hungover and tired. The second week is when my immune system and red blood cells are knocked about a bit. This leaves me feeling tired most of the week. The third week is recovery time. This gives me time to build myself up ready to be poisoned again. ‘Poison’ is the word that the consultant used to describe the docetaxel chemotherapy drug that I am having. It was slightly alarming to hear that, but actually it is a good description of what your body goes through. The dosage is worked out carefully according to your height and weight, as it would not be good to receive too much.

Having now had several visits to the MacMillan cancer centre at the West Suffolk Hospital, we have been very impressed with the communication within the department. Whenever we have had appointments it is very apparent that all the staff have clearly discussed my case in advance. The appropriate drugs are all ready for me. Even when I have had go to the pharmacy to pick up the metformin for the clinical trial, the receptionist seems to be expecting me and finds my medication immediately even though there is a room full of people waiting. It makes me feel like I am having private medical care in an NHS hospital!

One good thing from this last cycle is that I did not lose any more hair. Having lost a good amount last time, I thought it would all be gone by now. So, for the time being I still have some, although it is all grey. It will be interesting to see how it regrows. Our JustGiving page was very successful when Dan decided to shave his head in support of my hair loss. Ellie has now declared that she is going to do the same in a couple of weeks time. She is going to donate her hair to the Little Princess Trust, which makes wigs for children suffering from cancer. We will post some before and after photos later.

Anyway, I am all ready for tomorrow. Six weeks down, twelve to go.

Well this has been an interesting couple of days!

When receiving my first chemotherapy the nurses were very insistent that if I develop a temperature at any time over the next 18 weeks I must call the chemo hot line for advice.
I had been feeling a bit under the weather for a couple of days, but with no raised temperature until Saturday afternoon when it went up to 37.8. I called and was told to go straight to A and E and that they would be expecting me. With all the recent negative publicity about long waiting times I was dubious about how long we would have to wait to be seen but we were shown straight through to a treatment room.

I had assorted blood tests, ecg, chest xray and other checks which showed amongst other things that my neutrophil level was at a very low point of 0.1. This means I am neutropenic and very susceptible to any infections at the moment. I was given intravenous antibiotics and started on a drip as well. It was decided fairly quickly that I would be admitted to the MacMillan ward G1 and was found a private room. I am likely to be here for a couple of days, or until my neutrophil level has risen enough for me to be allowed out into the big infectious world again.

I have had lovely care from all the staff here, but I am getting very bored as I am not even allowed out of my room for the time being. Bim and Dan will be in later for visiting which will be good.

The photo is the view from my room, which isn’t bad, even if it is a bit dreary today.

I will update in a day or two.

It’s early morning on my first chemotherapy day. I was awake
at just after 3:00am and didn’t feel like I was going to get back to sleep. I don’t
feel worried about the treatment, but can’t really stop thinking about it. We have
had several weeks’ notice so I am actually looking forward to getting on with
it.

We have had a six weeks now since the diagnosis which has
given us time to get over the initial shock and panic. We have both returned to
work now and are starting to try to get back to some sort of normality. I have
actually only been back for one day and now will of course be off today for treatment.
They are being very good at work with no pressure to return before I am ready
which helps. My approach now is that I want to work as normally as possible during
my chemotherapy treatment but who knows what that will be? I had a long chat
with my boss yesterday and said that in a best case I will just need a few days
off for the actual treatment, in the worst I might not be in for 18 weeks. In reality
it will probably be somewhere in the middle.

Having had time to recover from the initial shock, I have
made a conscious decision that I want to make the best of every new experience
and try to find the humour in every situation, (I hope to post a chemo selfie later
with my new found selfie skills). I am sure there will be some low points along
the way, but we need to make sure there are plenty of smiles and laughs to
balance them with.

The good wishes from everyone has helped enormously and I would
like to thank you all. Needless to say that I could not be doing this without
my gorgeous wifey – Bim. Dan and Ellie have been great support as well.

Hope to add to this later today.