Our Story

This is a very overdue blog update from me. I have left the updates to John and must say
that I’ve been pretty impressed with him for keeping everyone up-to-date, which
I hadn’t expected.

I’m not going to apologise for saying that we have had a
bugger of a year – almost off the bugger scale.
October last year we were given John’s cancer diagnosis, followed by the
devastating news in November that the cancer is advanced and
life-limiting. Chemotherapy followed from
January to May which became debilitating as the sessions progressed, and then
the months of rebuilding strength and stamina levels which we perhaps weren’t
prepared for. John’s return to work was
more taxing and challenging than we had anticipated. John’s mum had heart surgery in April, which
went well, but she was taken ill and died suddenly in July from liver
cancer. We then cleared the family home in Canterbury
and it is now on the market. John’s
issues at work became more difficult, and as he said in his recent blog, he has
now left and is contemplating what he’d like to do to amuse himself in the
future.

John continues to have 3-monthly oncologist monitoring
appointments. He has had a few aches,
pains and general niggles recently, and we had convinced ourselves that we
would be faced with bad news at today’s appointment. This is very out of character for us as we
are usually positive and optimistic. The
relief we felt when we were told that his PSA level had actually fallen marginally
was difficult to describe. We had
probably put too much pressure on ourselves as we have a holiday booked and had
convinced ourselves that we’d need to cancel if the PSA level had shot up and
urgent treatment was required (stupid, in hindsight).

We have always been happy and content to spend time at home
when not at work, but with the events of the last year we have felt the need to
get away for (even if we say it ourselves) a well-deserved holiday. So tomorrow
we are off to the Maldives where we last visited 27 years ago for our
honeymoon. We intend to do very little
other than chill-out, read, swim, eat, and possibly partake in the odd
cocktail. Right – packing awaits!!

Honeymooners 27 years ago……

Time for a Change

After eleven rewarding years at Framlingham College it is
time for a change. As of today, I have left my job as catering manager at Fram
and am now looking to do something different with my time. I have a few things
in mind, but I will be asking for suggestions at the end of this blog, so get
your thinking caps on.

Before I go over a few memories about my time at the
College, I will just let you know that I am feeling well at the moment. I had
another hormone implant recently, which I have every three months. Apart from
the sharp sting from the enormous needle in my stomach, which the nurse
described as ‘brutal’, this part of treatment is now routine. I have my next
appointment with the consultant next week and although I do get a little tense
about the blood test results, I am hoping that there will be no bad news. However,
if the cancer has started to spread again, I expect I will be put on another
hormone treatment – Abiraterone, which is supposed to be quite effective.

Back to my time at Framlingham. I was sent to the College in
August 2006 on a three month contract with Compass to run the catering
department after the departure of the previous manager. I was actually
reluctant to go, as this was not in my career plan at the time. There were many
challenges to face in attempting to modernise the food offer at the school, but
these were helped by the catering team who were (mostly) keen to try new ways
of doing things. I am leaving the department with an enthusiastic and energetic
team made up from a healthy mix of ‘old timers’ and new recruits. It has been
one of my biggest pleasures to see so many of the staff develop and we have
managed to promote many of the team to more responsible roles over the years.

The College at night.

I would like to say thank you to my whole team for the
support they have given me since my cancer diagnosis and, in fact, since I have
been in the role as manager. I could not have achieved any of the changes
without everyone’s full commitment. So, thank you!

I know this sounds like an Oscar’s speech, but there a few
people that I am going to mention specifically. Firstly, Lorraine. We have
worked together closely for the last eleven years, sharing an office and a
common goal to keep improving what our department offered. I am going to miss
working with her. I hope she achieves all her dreams and ambitions. Knowing her, I know that she
will!

Next is a mention for our head chef, Tash. I have so enjoyed
working with her. Watching her develop as a chef from when she joined as a young
chef de partie to the confident and innovative head chef that she has become.
The College is very lucky to have her.

I won’t run through everyone in this blog as the department
has over 40 team members, but I will also mention Janice who has worked as a
catering assistant at the College for 40 years, since she left school. I think
that is an amazing achievement. Well done.

Just one more, and that is Diana. When she puts her mind to
it, Diana is an unstoppable force! When she heard that Dan and Ellie were
shaving their heads to raise funds for the hospital, not only did she give a
generous donation of her own, but she went around the town’s businesses
‘asking’ for their support and donations as well. When Diana asks you for
something, it is not easy to say no! So, thank you Di, you raised a huge amount
for the hospital. I know they were very grateful.

I hope the rest of the team will forgive me for not
mentioning everyone, but I would also like to say a special thank you to the
team at Brandeston, including Kim, Christine and Janet. Sorry I did not get to
see you as much as I would have liked.

Now, if anyone is still reading, I need some suggestions as
to what to do with my time. Bim is managing to keep me busy with a long list of
jobs to be done. But I don’t think this will keep me satisfied for long and
there is only so much wood that can be cut and stacked.

We are hoping to have a few days away in the sun somewhere
soon, to recover from what has been a pretty difficult year. This could involve
a few cocktails and some rather good food if all goes according to plan. I will
let you know.

This looks nice!

So, new career. What do you think?

Now, I know I have not posted anything in a while, but it has been a difficult few weeks as I am sure you will probably understand.

My mother’s funeral was on 20th July. Not surprisingly it was an emotional day, but actually we did make it a celebration of her life with so many of her family and friends attending. We had a lovely service in her local church followed by a short dedication at the crematorium. There were some very touching eulogies read by my brothers Bill and Jamie and Ma’s eldest granddaughter, Paula. We had a chance to relax and chat with everyone afterwards in Cafe du Soleil. Thank you again to Bill for arranging all the delicious food (and wine).

One of the high points of the day, and one that Ma would have been seriously impressed with, was the ringing of the Canterbury Cathedral bells in her honour. A huge thank you to Janet, my cousin, Adrian’s wife for making this happen. Adrian caught some of it on video. I have put a link to it here
Thank you both so much for this.

After the funeral, Bim and I were both back at work the next week. While Bim’s work life has improved beyond measure since she started her new job in Bury St Edmunds back in March, in contrast, mine has become increasingly difficult. I had hoped after finishing chemotherapy in May to be able to fit back in to my role as catering manager as normally as possible. However, this has proved more difficult than I had imagined.

After one of the most stressful days at work that I can remember, I found the perfect way to unwind when I arrived home. This consisted of, firstly, sitting in the sun with a cup of tea having a chat with Bim going over the trials of the day. This was followed by a couple of glasses of a rather good red wine while cooking supper. While we were eating our meal, (which, by the way, was salmon and chilli fishcakes) we could hear the distinctive mechanical whirring of the combine harvester in the field next to us. Every now and again we would have a thick cloud of dust fall across our home and garden as the farmer harvested the closest strip of the field.

I went for a short walk after supper and watched the combine moving slowly along. It was a stunning view with the sun going down behind the dust cloud. I managed to catch a few photos before the sun set completely.

For me, I don’t think I could come up with a better way to relax than that.

With my diagnosis late last year followed by 4 ½ months of chemotherapy starting in January it hadn’t been the best start to the year. However, the events over the last few weeks with my mother’s illness and her death last week has put it all in perspective.

One of the consequences of these events has been that all her children have reunited for the first time in several years. None of us lives close to each other. The current spread is Bill in Hawaii, Jamie in New York, Alison in Knowle and me in Suffolk. It has been a long time since we have all managed to be in the same place at the same time. So it has been a surprise that in such tragic circumstances we have managed to get together and have some good laughs and possibly too much wine! I know that my mother would have approved. Although Bill said that she would actually be annoyed that she was missing out. I think he is probably right.

This is a photo at Bill’s Cafe du Soleil where we all met for supper. For those reading who do not recognise all the faces, from the left they are; me, Bim, Tony, Alison, Jamie, Emilie, Emmanuelle and Bill.

We joked with my mum for years about how difficult it would be to tackle sorting out all the ‘stuff’ in her home after she had gone. It is a six-bedroom property and every room is full. Over the last few months, with my mum’s health failing, we discussed various options with her about the possibility of moving to a smaller bungalow or flat but we always came back to the issue of what to do with ‘everything’. We came to the conclusion that she could not move. Well, the reality is now on us and we have to make decisions about how to proceed. With all of us together we have been able to make some progress. I was shocked to find that my old bedroom still had loads of my things; school work, none of which was ever worth keeping in the first place, photos, toys etc. I thought I had cleared everything years ago, so I was very surprised to find it still there.

Although Ma’s home is full of all the usual sort of stuff – furniture, kitchen equipment, TVs and so on, all of these are only things. Most of which are not really that personal. However, it is the photos, slides and letters of which there are drawers, suitcases and cupboards full, which is going to take a lifetime to go through. I took a tiny amount of these home with me at the weekend and found that I was looking at some old slides from between about 1956 to 1964. I was born in 1962, so I was too young to remember these photos being taken, but they do bring back warm happy feelings, rather than sadness. I have managed to transfer some of these old slides on to the computer and they really are of a different age. I have put some online at http://gallery.thebethams.com if you would like to see them and I will try to add more later as time allows.

Having spent a little while looking through these photos it has made me appreciate what an idyllic start I had in life. Although I have always known this, it does no harm to be reminded. There were lots of cousins and friends to play with, long hot summer holidays in Cornwall on the beach, I am sure it never rained there! When we were at home we had great birthday parties. Tony said that the photos make it look like we were part of an Enid Blyton adventure story with ‘lashings of ginger beer’! I do not think he was too far from the truth.

I have only scratched the surface of a house full of memories, but at this stage I feel I just need to say thank you to my parents, Harry and Sheila Betham for the amazing start they gave me (and Alison, Bill and Jamie) in life. Thank you.

Sad News

If you read my previous post, you will be aware how seriously ill Ma has been over the last week. Last night the inevitable and rapid deterioration in her health continued. Having been with her all day we had decided to go for a bite to eat at my brother Bill’s, Cafe du Soleil but before we had a chance to finish eating one of the nurses from the hospice rang to say that Ma’s breathing had changed and that it would be best if we returned to be with her. We hurried back and gathered around her bedside. The nurse talked us through what we should expect to happen and reassured us that she was in no pain.

Even though Ma was finding it much harder to breath the Hospice nurse told us that she might keep going for many hours. Ma finally gave up her fight for life at about 10:20pm. She was surrounded with her family. We were holding her hands and telling her how much everyone loved her as she left us. She passed away peacefully. Our biggest regret is that Bill and Emmanuelle had been unable to be there in time, but we kept in touch with them all the way. They arrived home this morning and we have all been down to see her this afternoon.

I don’t think there is much else to say at this point except thank you to all those who have visited or sent messages of love to Ma in her final days. Naturally she has always been loved by all her family but it is so comforting to know how many close friends she has made over the years who will miss her, as we will. We are now starting to make plans to give her a big send off and a celebration of her life.

This photo was taken just a few weeks ago with my sister, Alison and is how we will remember her.

Well, this is a different blog as it’s not about me this time. This time it is all about my mum, Mrs Sheila Anne Betham or ‘Ma’ as she is to me.

Unfortunately Ma has not been well recently. She has had quite a long history of operations, the most recent was to have a replacement heart valve. In the past she has had a new knee, new hip and she had a major operation removing bowel cancer several years ago. Since her heart op, she has not really been right and has suffered from dizziness. This has led to her losing her appetite and becoming quite frail. Just over a week ago her GP saw her and decided she needed to go into hospital to have further investigations to find out what was causing her dizzy head. She was taken to Ashford hospital and spent eight hours in A & E before being admitted. Thank you to her God daughter, Mary Murdoch for being with her the whole time.

I travelled down and spent the day with her on Wednesday on the ward. I was quite worried to see how weak she had become in comparison to the week before. Ma was sent for a ct scan on the Thursday morning and then transferred back to Canterbury hospital in the afternoon, which we were happy about as her friends could visit her more easily here.

On Friday afternoon we were told by the doctor that the scan had shown a small tumour in her abdomen. Even now we thought that will be no problem, she will just need another operation to deal with it like she did last time.

Bim and I came down again on Saturday to see her. We picked fresh strawberries from the garden and brought a pot of sugar to tempt her with, knowing that this one her favourite things to eat. We were very shocked to see how much she had deteriorated since seeing her three days ago. She could not face anything to eat, not even the strawberries. Since then it has been a bit of a blur, but the consultant decided that this was not going to be curable and that actually it was secondary cancer in her liver.

Our first thought was that we should get Ma home to look after her there, as the ward in the hospital was busy and noisy. We did not feel she was receiving the care she deserved or needed. It all felt very impersonal. This would have been better than staying in the hospital, but luckily one of the nurses suggested moving Ma to the local Pilgrims Hospice in Canterbury. The was arranged and she was transferred here on Tuesday at midday.

Our first impression of the hospice was so positive. Ma was settled in a lovely ward, it is so peaceful and the staff here are really accommodating. One of the first things that happened was the nurse brought a jug of water and a glass. The water had ice in. This might be a minor thing, but it was a sign of the attention to detail paid to every aspect of the care here.

Ma’s bed was wheeled down to the conservatory garden room for the afternoon and with the patio doors wide open she could feel the breeze and hear the birds outside. She was able to open her eyes just briefly to be able to see the garden. I have added a few photos of the view. There are plenty of sofas and comfy chairs for all of her visitors to sit and chat and we think this must be comforting for her to be able to hear familiar voices around her.

The medical staff here have been very caring for Ma. They have made sure she is comfortable and given her a flowery nightie to wear, rather than the hospital gown that she was given before. She is now on a continual morphine dose which is relieving any pain she may have. We have been told that she does not have very long left to live but we are sure that she is in the best place.

Ma has had plenty of visitors, Jamie arrived back from New York this morning. Having flown overnight he has had no sleep yet today. William and Emmanuelle are on their way from Hawaii as I write this. They are due to arrive tomorrow.

We had a very moving moment this afternoon. We are again in the garden room and the Curate from Ma’s local church arrived and said prayers for her and anointed her with holy oil. We all stood around her bed as he prayed. I do not have a religious bone in my body, but I found this a really emotional time and I know Ma will be happy that he came to pray for her. So thank you Steve for what you did.

None of us really know what to do at the moment as we are just waiting for her time to end, and we don’t know how long that will be. We just try to carry on as normally as possible.

I have added a list of those that have been to see Ma so far.

Visitors

Mary Murdoch, Alison Fenn, Tony Fenn, Lucy Fenn, John Betham, Bim Betham, Dan Betham, Ellie Betham, Jamie Betham, Luke Betham, Jane Canning, Carol Friday, Adrian Betham, Alison Howard, Steve the Curate, Eileen Booker, Barney the Vicar, Jim Stitchbury, Kirsten.

PSA Envy

I can finally admit that until today I have been suffering from psa envy! This is not a term that the vast majority of the population will have heard of, let alone suffered from.

Since being diagnosed with prostate cancer last year I have been very focused on my psa level. This stands for prostate specific antigen and is how the activity of the cancer is measured. I have had a blood test every three weeks since January and through the combined action of the hormone implants, chemotherapy and metformin the psa has been gradually reducing. It started at 28 and at my previous appointment it had reached 1.1. While I have clearly been happy that it has been going in the right direction I have to say that I was disappointed that it had not gone under 1. I have also been a little disconcerted and actually envious of other patients whose levels have dropped from as high as 80 down to 0.1 in a much shorter period.

Finally at today’s hospital appointment we were told that my psa is now 0.49. It shows how obsessed I have become over this figure that I was so excited that I am now in the ‘under one’ club! I think I was particularly pleased as I had been worried that it would go up since finishing chemo a few weeks ago. Naturally we did have couple of glasses of wine to celebrate.

Post Chemotherapy

Having finished my chemotherapy treatment in May I am delighted to say that I am feeling really well. I still have a few physical side effects – fat face, hair loss, damaged finger nails etc, but my energy levels are improving every week and I am starting to lose a little weight (slowly) which I feel good about. The fatigue and the change in taste have largely gone which is a big relief.

To show that I am beginning to get back to normal, last week I finally had a log splitting session with the holly that we collected in January. Some of you will know that this is a regular weekend task for me getting the wood ready for our boiler which we use in the winter. This is the first time in six months that I have felt well enough to do this. While I was not able to do a lot to start with, it felt great to be doing some physical work again. There is plenty still in the log pile so I will be busy for some time I think.

Effects of cancer on the mind

This is quite a difficult topic to write about as it is quite personal, but I am going to give it a shot!

At the time I was diagnosed we were both absolutely devastated and spent a whole month in shock. It is really difficult to remember what we did during those first few weeks. I know I did some quite bizarre things, which looking back are quite funny. I had the urge to keep buying things online, mainly from Amazon. We ended up with some sort of delivery most days, including a new cordless strimmer and a Dyson fan along with numerous new tools for the garage.

When we were told that I would start chemotherapy in January it gave us something positive to focus on and while it has some pretty unpleasant side effects I think this was the start of the mind starting on the recovery process. I would definitely say that my mind has repaired quicker than my body, although I still have occasional odd ‘moments’. At a recent blood test, the nurse was making small talk and said “Are you on your way to work after this?” to which I told her I was. She then said “Where do you work?” I had absolutely no idea! I fumbled around for quite some, I was able to tell her that I am a catering manager. It suddenly came back to me and I almost shouted out “Framlingham College”. She looked a bit startled and then stuck the needle in my arm!

The unpleasant reality of the disease is that I know that I will not be around for as long as I had planned for. This knowledge takes some time to adjust to, however, having made the decision to try and maintain a positive approach I find that I am now enjoying normal everyday experiences far more than I used to. It is like I am noticing things that I used to take for granted. It might sound a bit corny, but this includes things like hearing bird song in the garden, seeing local wildlife (even rabbits) and rediscovering some of my favourite old music which I listen to on the way to work.

Having had the good results at my last hospital appointment I am now feeling even more positive about things and hope to carry on enjoying life to the full.

Well, I finally finished my chemotherapy at West Suffolk Hospital. It was 18 weeks of being poisoned. Each of the six sessions became harder to deal with and I felt more and more tired the closer we came to the end of the treatment. I am very pleased to have that period done with, to say the least.

Although I had been going in to work as much as I could during my treatment, I only managed one day in the last six weeks, so it was a bit of a shock to the system to finally start my return to work a couple of weeks ago.

It is actually a really unsettling time at the end of chemotherapy. This is for a number of reasons, some physical and others psychological. Clearly after chemo your body has taken a quite a beating. Not only do you feel weak and incredibly fatigued, but you have to deal with the obvious physical effects such as hair loss, and in my case, weight gain, especially my face. At the same time as this you are also unsure about how successful the chemo has been and what the immediate and long term future holds. It is no surprise that you feel vulnerable and extremely fragile at this point, and then to add to this you go back to work and try and pick up where you left off before you were diagnosed with cancer!

It is not surprising that I felt nervous driving to work on my first day back, but I had a lovely welcome from my catering team, including a good number of hugs which really helped me start to settle back in. I did work half days to start with, but after a few days I began to feel that I needed to prove that I could still do everything that I did before I was ill. I then tried to work a full week including an afternoon tea for 100 guests on the Saturday. I am sure that you can guess that this left me absolutely drained and feeling worse than I had before I went back to work.

I am not sure why, but I had not spoken to my doctor about going back. I put this right last week and was given sensible advice and told that it may take two months of a phased return, working shorter hours before I will be back to ‘normal’. Anyway, I now feel more settled about what I should be able to achieve and I won’t feel like I am failing if I can’t do it all straight away. For those of you who don’t know, I work as catering manager at Framlingham College in Suffolk, which is an independent boarding school. I have added a few photos below to give you an idea of where I work.

The front of the senior school.
Above – The main dining room. Below is the school’s promotional video.

As I am sure most of you know, we built our own home a couple
of years ago. It was a dream we had held for a very long time. We finally had
the opportunity to realise this dream and had a fantastic experience
commissioning and building our ‘forever home’.

It is an overused cliché to say that it is a journey building
your own home, but I really do think it sums up the route we took. Along the
way we had so many ups and downs, coming very close to calling it all off many
times. There are so many aspects that have to come together to achieve your
perfect home – budget, land, helpful planners, excellent design, the list is
endless. However, the most important thing is finding the right people. To start with, we were fortunate to find an
architect who understood our priorities and our unique building plot. This was an
odd shape disused haulage yard which made it difficult to design a traditional family home that fits.

We went through a long and at times distressing process of approaching
building firms to price our dream home, only to find that it would cost more than twice what we could afford. We
then went through a lengthy redesign period and finally arrived at dream home ‘number
two’. This time it was the affordable version. However, this was only if we
took the risk of going the self-build route. There are no guarantees of success or that it
will come in on budget if you decide to build this way!

We then found a local developer, Gary Taylor, who agreed to
help us project manage our build. Through Gary we employed some amazing trades
and craftsmen who then helped build our home. We were closely involved, being
on site every day over the ten months that it took to complete.

All through the build we were very impressed with the
attention to detail that every one of our team paid to their work, from electrician
to bricklaying and joinery. We always felt that we had achieved something special and
are delighted to say that our home has just been awarded the RIBA, (Royal
Institute of British Architects) Craftsmanship Award for new build properties
in Suffolk.

There are a few photos of our home in the pdf file below. We
would just like to say thank you to everyone that was involved in building our
home. The Craftsmanship Award goes to you all.

A month or so ago we
received an invitation from the West Suffolk Cancer Services User Group,
inviting us to attend a patient forum meeting. Accepting the invitation seemed
like a good idea at the time, but I must confess that it would have been easy
to find an excuse not to attend this morning (Saturday) on a precious day off.
Weekends are always busy fitting in chores etc, and enjoying some much
needed down-time just pottering. With no good reason to offer our
apologies, we duly went along to West Suffolk Hospital this morning, and joined
the other 60+ attendees who have all been affected by cancer, be it as a
sufferer or a partner/carer. John commented that it’s usually good to be
one of the youngest in the room; somehow today it wasn’t such a good feeling.
That said, although most people were older than us, there were a few that
were younger. We were unsure what to expect, but the agenda included
talks by our local MP Jo Churchill (or prospective MP as she needs to be
referred as prior to the General Election on 8th June) who shared her moving,
frank and personal experiences of her two cancer treatments, which prompted her
desire to enter politics to make a positive change to cancer services.
Another speaker was Dr Liz O’Riordan who is a local breast cancer surgeon, who
was also recently diagnosed with stage 3 breast cancer. She spoke eloquently
and honestly, with no notes or Powerpoint presentation, about her experiences from a patient’s perspective. Since
diagnosis Liz has documented her experiences on her website; writes a blog and
is an avid Twitter user. Gosh, I wish we had seen her website when John
was diagnosed in October. It was heartening to hear that many of Liz’s
observations and experiences mirrored ours, and her passion now is to educate
health care professionals so that the patient’s experience can be improved. It was such a relief to hear both Jo and Liz describing their memories of
their diagnosis so vividly, and how it affected them. They are both
clearly highly intelligent individuals, but they both experienced the same
complete shock and raw emotion that we did on hearing the news that no one
wants to hear. I’ve also been interested to hear that many people find it
helpful to keep a diary to document their thoughts. Doing so certainly
helped me when John was first diagnosed, as I would spend endless sleepless
hours going over and over events; scared that I would forget details or
important facts. Writing these feelings down helped me to not dwell on
things that had happened, and focus more on what was to come.
We were also given the opportunity this morning to speak
about our experiences of treatment that we have received (I can’t bear to call
it our ‘cancer journey’ which many people refer to it as). We were able
to speak about things which may appear petty and trivial, but other cancer
patients and health care professionals completely understand and recognise the lasting effect that some minor event or action can have. Such as: 1. Being told that you
have cancer, and then immediately being inundated with facts, figures and
options – going into shock and not being offered a glass of water or cup of tea
which you desperately need. 2. Being quickly ushered into an
adjoining room to have a chat with a nurse to allow the consultant to deliver
news to the couple that were in the queue behind you. 3. Within 30
minutes of diagnosis being provided with a stack of information leaflets which
are put into a black plastic wallet (the wallet of doom which I promptly burned
the next morning). 4. Within 30 minutes of diagnosis being given
information about your sex life during and after treatment (not at the
forefront of your mind at that time!). 5. Being told that there are
2 treatment options (surgery or radiotherapy), but there is no urgency to
decide which treatment to have, only to be told at the next appointment that
the cancer is advanced and there are no treatment options. 6. The
sheer brutality of being told that the cancer is advanced and the prognosis is
4 – 5 years. 7. Poor personal hygiene of consultants that cough
into their hand and then shake yours when you are vulnerable to infections when
having chemotherapy. 8. Reluctance to walk into the Macmillan
support unit due to the presence of a line of sinister looking mannequins
wearing dated wigs. 9. Eventually visiting the Macmillan support
unit (this morning) and focusing on a folder on a shelf marked ‘funeral
information’. These things may seem like a bit of a rant, but the
facilitators did seem genuinely keen to hear of patient’s and carer’s
experiences, and we are hopeful that they will be able to put in place some
changes to improve services in the future. Having said that, other than these
relatively minor points, the treatment that we have received has been
excellent.

So how is John now, 2 weeks
after his 6th chemo? He’s
doing well! He had aimed to start his
phased return to work last week, but fatigue got the better of him, and his
return has now been delayed to next week (all going well). His hair has started to regrow and it is coming back thick and brown/grey, replacing the colourless wiry mat that he’s had since January. We may not have mentioned, but another
side-effect of the chemo treatment is damage to finger nails which become
damaged, discoloured, and brittle. To
prove that he has now had 6 rounds of chemo you can count the lines on his
fingernails:

John has completed a
gardening project to lay membrane and bark chippings in our fruit garden. This has been a major task for him, and would
have been completed with far less effort and a lot quicker just a few months
ago, but it’s been a massive achievement for him to complete some manual work
outside.

Next week we have an
appointment with the interim oncologist consultant and we intend to go with a
list of questions. We are entering a
phase which makes many people anxious – treatment comes to an end and you are
left alone to think ‘what happens next’.

On Thursday we are attending
the Building Awards Dinner. Watch this
space for the results!

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!