Our Story

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.

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.

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.

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