Our Story

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.

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

John’s initial cancer diagnosis was on 27th October. The news knocked us for six as he has none of the typical prostate cancer symptoms. At this appointment the consultant advised us that there were two treatment options: surgery (which he proudly told us would be carried out by a robot) or radiotherapy. There was no urgency to decide which treatment we would choose. Further tests followed and on 21st November we were given the shocking and unreal news that the cancer had spread to the lymph nodes and bones. Surgery and radiotherapy were no longer treatment options. It was a completely unreal and unimaginable experience to go from John being outwardly fit and healthy in late October, to less than 4 weeks later sitting in an oncologist’s consulting room being told that life expectancy is less than five years. At this appointment John was prescribed hormones in an attempt to slow the cancer’s spread. Fortunately he has suffered only very mild side effects since this treatment commenced. Several other tests followed and on 15th December John was offered a course of chemotherapy, and the opportunity to take part in a clinical trial which will study the effects of insulin in controlling the cancer’s spread. It’s difficult to describe the effect that the diagnosis has had on us, but we are now hopefully through the stage of being in utter shock and disbelief. We are preparing ourselves for the start of the chemo treatment on 5th January, and will both aim to post regular updates here to keep you informed of the progress with treatment. Thank you so much for all the support and kind wishes that we have received so far from wonderful family and friends. Our best wishes to you for a happy and healthy 2017. Love to you all. Bim. xx