Our Story

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

Today’s third chemo session went well with no delays or hitches. This week’s blood test results show the PSA level has come down to 1.88 which is great news.
So what do you do for 3 hours on a sunny day when having chemo….?
…..get carried away with the seed catalogue and order!

Since the last chemo treatment John has been into work most days, and only stayed away when colleagues were suffering from colds, and one day when he felt pretty wiped out (the pattern shows that his energy levels dip 10 days after a chemo session). He has actually taken this week as annual leave, expecting to feel well in the week of the next chemo session. More blood tests were taken last week to monitor the effects of the Metformin clinical trial drugs. These results were good (neutrophil levels were 1.3 compared to .5 at the same stage 3 weeks ago, and PSA had reduced to 2.2), so he has been given a longer 3 month prescription. On Monday we had an appointment with Dr Rimmer who appeared happy with how John is tolerating the chemo and gave the go-ahead to ‘come in to be poisoned again’. More blood tests yesterday in readiness for the third chemo session tomorrow.
John’s initial investigations started in September last year, just as Steve Hewlett began his Monday afternoon Radio 4 PM interviews about his cancer diagnosis, treatment and participation in a clinical trial. At the time we had no idea how compulsive his honest, personal account of his treatment would become. It feels as if we have learned the cancer language with him. If you haven’t been following his account it really is worth a catch-up on iPlayer.
You may be aware that we are rather obsessed with wood, and much of our spare time is taken up with collecting, cutting, splitting, stacking and burning wood on the log boiler which heats the house and hot water. The wood is a free resource, but we also get paid an allowance from our lovely government for burning it (The Renewable Heat Incentive payment). This has really helped to achieve our aim of having a carbon-neutral house. Dealing with the log boiler is quite a time-consuming physical activity, so we have decided to install an air source heat pump (ASHP) which can take over when we don’t have the time or energy to use the log boiler. The ASHP is being fitted this week, and although it should be capable of heating the house just by extracting warmth from the air, it will require electricity so it won’t be as environmentally friendly as the log boiler. I suspect we will only use it when absolutely necessary.
Well, no blogs from us in over a week, and you get two in a day. John managed to post his just before me!

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.

10 days after the second round of chemo and John is already noticing a pattern to how he is feeling. In the week after chemo he feels good, with only a few side-effects such as slight fatigue, mouth tenderness, change in taste, and difficulty sleeping (probably due to the steroids which have to be taken alongside the chemo). He is still managing to go to work, although he did stay away at the beginning of the week as some work colleagues were suffering with colds. This would not usually be a problem, but it’s best to avoid anyone that may be infectious whilst he’s susceptible. Then at day 9 – 10 post chemo he seems to get very tired, and has a nap in the afternoon to recharge his batteries. It was at this stage after the first round of chemo that he had his hospital admission, so we are hopeful that we’ll avoid that this time around. We can only presume that his neutrophil levels have dropped again, along with his red blood cell count which will account for the fatigue. His appetite is not affected; perhaps if anything he has more of a liking for sweet foods which is unusual for him.
Today we took a drive over to the coast and had a short wander at Shotley Point overlooking the container port. It may have only been a short walk, but the bracing weather blew out the cobwebs and did us the power of good.

The Just Giving fundraising page continues to grow, and currently has reached over £1300 – amazing! Thank you to everyone that has supported us, and the charity so generously.