Our Story

We have been bowled over by the support and generosity of friends and family for the fundraising head shave. We thought that we had set an optimistic target of £500 to raise money for Cancer Research, but this was exceeded within just 8 hours. Amazing. Currently we have raised £940, and it would be fantastic if we could get to £1000. When we set up the Just Giving page on Wednesday we hadn’t set a date to do the deed, but as John’s hair continued to fall out at a great rate there seemed no reason to put it off any longer. So on Friday night Julie came with her clippers and in no time John and Dan looked ready to be enlisted into the army.
Many thanks to Julie for giving up her Friday evening, and for contributing to the fundraising. The Just Giving site is still open for donations if you would like to contribute.
Two days after the last chemo treatment and John is feeling a little weary, and the change in his taste has reoccurred, but other than that he’s doing well.
Thank you all for your support and best wishes.

On Monday of this week we had an appointment with Dr Rimmer, the oncologist, to review the first chemo session and check blood results. It’s amazing to see that John’s neutrophil level has returned to normal (5) from .1 when he was admitted to hospital. This gave the go-ahead for chemo session number two which has today been completed without a hitch. It will be interesting to see how John feels and if the side effects take a similar pattern to the first 3-week session. This week he has felt fine, and has been into work each day. We have been told to expect the fatigue to become more pronounced as the treatment progresses, but we’ll wait to see as it is clear that everyone reacts differently.
We were told that he may experience ‘hair thinning’, and we had expected this to kick in perhaps after the third session. Last weekend his hair started to fall out well and truly, and has continued to do so this week. John has always had a good head of hair, and we are seeing that now with so much of it falling out. He’s decided that it will be best to shave it all off, and Dan has volunteered to support him in shaving his off too. This seems too good an opportunity to miss, so we have set up a Just Giving page to raise money for Cancer Research UK. We have been really touched by the generosity of friends and family already – thank you so much to all that have supported us so far.

It was John’s Birthday on 20th, but having just been discharged from hospital we decided that it wasn’t worth the risk eating out as his blood levels still left him susceptible to infection. But with good blood results on Monday we did go out for a belated Birthday celebration.

We are now home and keeping our fingers crossed that side-effects of chemo session number 2 will be mild and similar to the last session. We would like to avoid another 3-night stay in hospital. Two sessions down, four to go……

That 3 day stay in hospital was a bit of a bizarre experience. Other than feeling pretty tired, John didn’t feel particularly unwell, but the situation was taken seriously by the medical staff. He was kept in glorious isolation for 3 days as his neutrophil levels were very low, making him at high risk of infection. He was monitored every 4 hours for blood pressure, temperature, weight, pulse; blood tests were carried out daily; he had IV antibiotics every day, and liquids in and out were measured. It was encouraging to be told that the neutrophil levels rose to .2 on day 2, and then .4 the following day. The levels should continue to rise until his next course of chemo which is due next Thursday.
Visitors were required to don obligatory plastic aprons and gloves, which did get pretty uncomfortable and tacky after being worn for 5 hours of visiting:
As he was feeling OK, boredom and claustrophobia did set in. This was eased when he reorganised the furniture in his room so that he could walk from one side to the back of the shower/WC and back again – a grand total of 30 paces, which he did for about 20 minutes at a time.
John was really impressed with the care and attention that he was given by the medical staff – he’s making a ‘thank you’ cake now that will be delivered to them tomorrow. A bit of a blip was the heating breaking down which was a problem as the temp outside dropped below freezing. There was also no hot water for a shower on his last day there. He was pleasantly surprised with the food, but may have ordered too much, concerned that portion sizes may be small and he’d go hungry:
He was discharged yesterday and was ready and waiting to be picked up at the entrance when I arrived. A fast get-away was required. We had a good walk when he got home – freedom and fresh air were appreciated. Today he says that he feels perfectly normal again – long may it last.

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.

On Sunday we had our first experience of the importance, and difficulty, of avoiding infections. Dan phoned to say that he was unwell with D&V. Under normal circumstances (even though this situation has never arisen before) we’d either go to his flat or he’d come to us so that we could mop his brow and do whatever was required. We couldn’t risk having contact, so the poor chap had to fend for himself. He’s now well, so looks like it was a case of the dreaded norovirus.
On Monday John had a fasting blood test to assess his eligibility to join the clinical trial. Today he received the good news that he will be the first person at West Suffolk hospital to take part in the trial, so tomorrow he collects MORE DRUGS – Metformin, which is commonly used to treat diabetic patients.
Side effects from the chemo are so far limited to tiredness, aches and pains, and a bit of a husky voice. He’s going into work daily, but doing shorter days as and when he runs out of steam. We’re taking each day as it comes, and tomorrow the antibiotics start as he’ll be most susceptible to infections one week after chemo. Then it’s the countdown to the next chemo session in 2 weeks time. Just 5 more sessions to go!

We were both apprehensive about how John would feel after the first chemo treatment, having been given lots of information on possible side effects to expect. He slept well on Thursday night and woke feeling a bit woozy and ‘hung-over’. An anti-sickness pill sorted that out. He had arranged to spend Friday at home, not knowing how he’d feel after the first treatment. Other side effects that he’s experienced so far are: a bit of a strange taste in his mouth, a rosy face, and generally feeling a bit tired. He still has his appetite and (hurrah for me) continues to cook. So all in all he’s feeling pretty good and continues to remain up-beat. We’re very aware that it’s early days still, but so far so good. The chemo drugs are designed to kill off fast growing cells, and this kicks in after one week. This will reduce his white blood cell count, resulting in an increased risk of infections, so it will be important to avoid anyone that is ill and/or infectious. Nails and mouth/gums will also be affected, so precautions to take are brushing teeth with a very soft toothbrush, using mouthwash, and not flossing.
As John was feeling well today we went to collect a load of wood with Dad. Other than lifting heavy logs he is being sensible and has a nap in the afternoon to recharge his batteries. Being outside in the fresh air also does the power of good.

Today we found out that John probably didn’t sleep too well last night as yesterday he had to take several steroids pre-Chemo today. A side-effect of steroids is not sleeping. On Tuesday he had the second hormone implant (Zoladex), and blood tests. The results of the blood tests were very encoraging: prostate cancer spread is monitored by measuring PSA (prostate specific antigen). John’s readings since diagnosis have been 27, then 14 and today was down to 3 which is great news. Today he had to take more steroids and an anti-Sickness drug. Then he had a line put into a vein in his hand (a bit of a trial, so we now that he needs to be very well hydrated before the next treatment), and was ‘flushed through’ with a saline solution. This was then followed by the chemo drug (Docatoxil), and then flushed through with more saline. All new experiences and procedures for us, but is was humbling to see so many other patients having similar procedures. We hadn’t appreciated that everyone’s chemo drug is tailored exactly to suit them, and is mixed on site daily before being administered. We’ve been dispatched with a suitcase of more drugs: more steroids (I can’t see he’ll sleep for days), antibiotics, antifungals, and more steroids to take before the next chemo treatment in 3 weeks. More blood tests are required before the next treatment to check blood levels and PSA. We also had a consultation with the oncologist about the clinical trial that John may be eligible to take part in (he’ll be the first patient at West Suffolk if accepted). So today he had an ECG and will need another blood test before being accepted onto the trial. The trial is looking at the effect of a diabetic drug (Metformin) slowing down cancer spread. We should know next week if he’s been accepted. So now we sit back and wait to see if he’ll be affected by any side effects, which may include tiredness, some hair loss, mouth ulcers, metalic taste, loss of appetite, and susceptibility to any infection. He coped really well and so far seems fine…..We will keep you posted.
Thank you to everyone who has been in touch today and sent good wishes – it really does mean a lot.
Love to you all. Bim xx

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.