Our Story

Welcome to our regular three monthly update.

We have reached the end of the first two years of the
STAMPEDE trial for prostate cancer. The trial has been running for many years
and has tested several different treatments and combination of drugs. If you
are interested in the detail, it stands for

“Systemic Therapy in Advancing or
Metastatic Prostate Cancer: Evaluation of Drug Efficacy”,

which is a bit of a mouthful. I am on arm K, which is testing whether
the diabetic drug, Metformin helps slow the progress of the disease. Obviously,
I am hoping that it does! So far it seems to be doing pretty well, as I still
feel well and have no real symptoms other than being a little tired. But that
could just be down to getting a bit older. I have already benefitted from the
findings of some of the earlier arms of the trial. It is good to see that as
soon as the researchers show that a particular treatment is better than the
current standard regime, these treatments are offered to current patients fairly
quickly.

As part of reaching the two year milestone I had a fasting
blood test this morning and we are due to see the consultant and research nurse
on Monday for the results. As always this is a tense time as we know that at
some point the current treatment will stop working as well as it did to start
with. It is quite possible I will be given a new hormone drug – Enzalutamide at
this meeting. We have already been told that when the PSA reaches four, that
this will be the time to add an extra medication. Hopefully there won’t be too
many side effects if I am put on this now.

It is possible that the current trial I am on may finish at
the end of these two years, but I expect to find out on Monday. If it does come
to an end there are several other trials that I hope to be eligible for. The
immunotherapy treatments look very promising so I will definitely be putting my
name down for one of them if the opportunity comes up. Fingers crossed.

I have mentioned in previous blogs the realisation that
working part time is fantastic as it gives you the time to do the things you
never seem to get round to when in full time employment. I am now working at
three businesses on a casual basis which provides more than enough work. One of
these is a care home that I originally started with as a casual chef but I am
now acting as catering consultant and trainer as the standards are well below
what you would hope for. Lots of frozen food and packet mixes, which is such a
shame to see. Unfortunately I have now become the most hated person there as
the whole department are having to work harder and take more responsibility. It
will be interesting to see how it ends up.

Apart from work and cancer treatments we continue to have a
very full social life with lots of holidays planned. So far for this year we
have the Maldives in April, Scotland in May and Hawaii in October! I am sure we
will fit a couple of extra short breaks in as well.

We hope you are all well and enjoying life to the full. I will let you
know the results of our appointment next week.

A few photos from some recent trips.
A short break in the Cotswolds to celebrate my birthday.

An excellent vegan meal at Rubino Kitchen near Chelmsford with Ruth & Russell.

Celebrating with Maurice & Gary after they moved into their new home in Dorrington, Shrewsbury.

No News is Good News!

Sorry we have not posted anything in a while. Hopefully the
title explains the current situation. We had our most recent consultant
appointment a few weeks ago, and everything remains pretty much the same as
before. The PSA remains low at 2.00 which means no change in the treatment regime
for some time yet. Our doctor said that it looks like the PSA is doubling, roughly
every six months. So we continue to live life to the full.

We have thoroughly enjoyed the long hot summer this year.
This is the first time I can remember having enough time at home to be able to
really enjoy the garden during this time of year. We barbecued most evenings
and spent as much of our time as possible outside. I won’t go on about work again,
but the demands of the busy holiday business at the College always made it
difficult to have any quality time at home.

We have managed to fit in a few activities since our last
blog update. I will give you an idea of what we have been up to.

We spent the day with friends, Ruth and Russell at Brands
Hatch on a Help for Heroes event. Russell has an Ariel Atom which he drove for
the day, offering injured servicemen and women the sort of thrill and excitement
that they have not experienced since leaving the forces. It was humbling to see
these people with severe injuries having such a good time. There were about 40
super cars there, from McLaren to Lamborghinis. We were lucky enough to have a
few laps with Russell in his Atom, which I think was the fastest car there. I
found it absolutely terrifying, in an exhilarating sort of way!

We have had the chance to catch up with a few family members
with visits from my cousin Penny and her husband Peter from New Zealand, and
both my brothers, Bill with his wife Emmanuelle, and Jamie who were back in the
UK from Hawaii and New York respectively. It has been great to catch up with
everyone.
Penny, Me, Peter, Bim
Jamie & Dan

Me, Bim, Bill, Emmanuelle

We have also managed a couple of short breaks away. We had a
few days in Wales to see Chris, which, as always involves good food, a lot of
laughs and a number of glasses of wine! And we have just come back from a week
in Dubai, visiting friends Linda & Benny. So, as you can see, we have been
keeping busy.

Benny, Linda, Me, Bim

We are coming up to the two year anniversary of my diagnosis
and we often think back to what it was like at the time and how we came to
terms with it. It might just be because of our situation, but there seems to be
much more news about cancer recently. There have been some interesting articles
over the last few days about how you should talk to someone with a terminal
diagnosis. Even doctors don’t really have training on what to say apparently.
It is a really devastating time and it is difficult for friends and family to
get the balance right. If you find yourself in this situation here are a few
things to consider.

·
The first and most important thing is to contact
them in some way – text, call or visit. They will be feeling terrible already,
you contacting them won’t make it worse, and you might just help.

·
The opposite of this is also true. Don’t ignore
them or pretend that there isn’t a problem. It doesn’t matter if you don’t know
what to say, just say something.

·
Avoid trying to give advice – about diet or alternative treatments. It
really doesn’t help.

·
Try not to be overly sympathetic, this can make
you feel worse.

·
Being told to stay positive doesn’t help.

Talking to someone who has a terminal illness might seem
difficult, but just offer your help and friendship and then take your lead from
them as to whether they want to talk about it. We have had several times when
halfway through a conversation about my illness I have just said “I’d like to
talk about something else now”. In fact everyone seems quite relieved at that
point and we switch to something completely different!

I don’t think I have anything else to tell you at this
point, so thank you for reading this blog again.

Bit of a cheesy title, I know, but I will explain later.

Time to give you another glimpse into our lives. As you probably know by now, we have meetings with our consultant every three months which is when we tend to give you yet another update. We have come to plan our lives around these quarterly intervals. When ever we book something into the calendar, we always check how it fits in with the next appointment.

Having looked back since our last installment, we’ve actually had quite a busy time.

The real highlight has been meeting the latest addition to the family who is also the first of the next generation. My great nephew – Jack. But I will tell you about him a little later.
Baby Jack

With our newly discovered leisure time we have started going to a few concerts. We have seen Jules Holland and friends (he was ok), Suzanne Vega (she really is a bit strange) and the highlight for us both was Nile Rodgers & Chic at Blenheim Palace (amazing). If you have the opportunity to see them, I thoroughly recommend you take it. It was an incredible performance. You may be able to spot a bit of a theme to our tastes, nothing really particularly new!

https://youtube.com/watch?v=_WAw58tOZDo

We also managed to fit in an enjoyable week in the Peak District with a few picturesque walks. It is a stunning part of England. Whilst there, we spent a day at the RHS Chatsworth House flower show, courtesy of gold medal winning Harvey’s Garden Plants. We came away with lots of ideas to try in our garden.

The view from our rented cottage in the Peak District. And Chatsworth House above.

As a belated birthday treat for Bim we had afternoon tea at the Shard on the 53rd floor. It is the highest restaurant in Europe I believe. The food was great but the views across London were quite breathtaking.

Afternoon tea in the Shard

A word about work life balance!

During my eleven years at Framlingham College, I would regularly raise concerns about work life balance in my appraisals. Not just for me, but for the whole department. Each year my line manager would agree that something should be done to try and help, but each year the work load became heavier and the scales became tilted further away from the enjoyable, life part of the balance. Now that I am working on a freelance basis, I work on average two days a week and have the other five to do everything else! With Bim working so close to home now, we are able to really enjoy our time so much more than we ever have. I can assure you that, whoever decided everyone should work five days a week and have two off, got it completely the wrong way around! If you ever have the chance to change your work life balance for the better, go for it. You won’t regret it.

Another important event recently was my father in law, Keith’s 80th birthday. Keith is not the sort to want any fuss but we did spend a lovely family evening together and had an enjoyable outdoor meal to celebrate. This is the menu we cooked and a few photos from the evening.

I think the Malteser cheesecake was the favourite course!

So, back to baby Jack, and the reason for the title of this blog. Jack is the first child of my niece, Paula and her husband Rich. You will remember that it was a year ago in July, that my mum died and the whole family gathered in Canterbury to be with her at the end. It was understandably a very emotional time. And now, one year on, we have gathered in the same place to welcome Jack into the family. Jack would have been Ma’s first great grandchild, and while she did not get the chance to meet him, she did know that he was on his way, which I feel is comforting and creates a connection between them. As usual we all met up in Bill and Emanuelle’s restaurant, Cafe du Soleil. Thank you again to both of you for all the fantastic food and drink. Jack is now six months old and was born in Hawaii where the family live, so this was our first chance to meet him. It was a delight to meet such a content, happy baby boy. He really seemed to enjoy all the attention he received from everyone.

Here’s the family photo.

Emanuelle, Jack, Bill, Paula, Rich, Emilie, Luke, Jenny, Dan, Bim, Me, Ellie, Adrian, Janet.

Now, I realise I have not said anything about our oncology appointment yet. This is because there is not really that much to say! I continue to feel very well and show no symptoms. The PSA has gone up slightly, as it has for the last few meetings, but is still low. So no change in the treatment regime for now. I continue with a hormone implant every 12 weeks and the clinical trial of Metformin. Dr Woodward did say that when the PSA reaches 4 (it is now 1.4) she will introduce a new hormone called Enzalutamide which should help control the cancer for longer. There is also a lot of exciting research going into immunotherapy drugs at the moment, and we did discuss the possibility of going on a clinical trial for this in the future. So we have plenty of treatment options to come, which is positive. For the time being we are going to carry on enjoying life to the full, which will hopefully involve another trip to our favourite group of islands early next year. We will keep you informed.

Thank you again for reading our blog. It will be interesting to see how many people it reaches this time. We had over 350 readers on a previous blog from right across the world. Amazing!

The first thing to
say is that we had an amazing time in the Maldives again. You won’t be
surprised to hear that, I know. We do appear to have changed from the people we
were, never going away on holiday, to needing a spell in the sun every six
months at least!

The highlights from
our trip to the paradise island of Bodu Hithi in the Indian Ocean were swimming
with turtles, dolphins and an uncountable variety of reef fish. But the event
that topped them all was a serene sunset cruise. Sailing on the calm waters in
a traditional Maldivian Dhoni, sipping a glass of chilled fizz while the sun
gradually sank below the horizon.

We had some great
food, including a beach barbecue serving grilled lobster and very fresh tuna.
Our table was on the sand with the sea just feet away. This was another
memorable evening.

Here are a few photos
from our stay. We can’t wait to return again, hopefully early next year.

Back to our life living
with advanced cancer. I know that when I saw others going through similar
illnesses I always used to think that I did not know how I would cope if it was me.
I expect most of you have thought something similar. Well we have now had a
year and a half to work out how to cope with our ‘unfortunate situation’. I saw
a report on the news yesterday which said that the mental side effects of a
cancer diagnosis and treatment is actually more difficult to deal with than the
physical effects. I agree completely with this. We have tried a bit of counselling
and group meetings on occasion but most of the time we both find that if we
talk openly to each other and to some of our friends about our worries we can
manage quite well.

We have told you
before that our apprehension builds up before every oncology appointment, and
this worry always focusses on the dreaded PSA level. It has been as low as 0.4,
which is very good, but if you read the previous post, you will know that it
has risen on the last two occasions. It is certain to go up more in the future,
but the different treatments available may help slow that inevitable rise down
for a while.

Because we have been
so fixed on the PSA up to now, it has taken me a while to realise that we are
going to become more and more stressed over the next phase of my treatment as
it rises. It suddenly occurred to me that if I stopped worrying about PSA and
just focussed on how I feel, that would be a much better way of coping with the
future. It really felt like a revelation, and the key point here is that I feel
absolutely fine at the moment. So that is now our new strategy.

I am continuing to
work for a couple of retirement homes, cooking lunch for the residents. I find
that I still really enjoy cooking and I try to present what is quite a basic
menu as well as I can. I just work two days a week on a casual basis, which is
great as it gives me time to spend doing the other things I have never really
had time for. At this time of year it has been fantastic to have more time in
the garden. I have even developed a bit of a tan, which I have never really
managed before working so many hours indoors.

Bim mentioned in one
of her posts that we are making the most of our lives at the moment and are
determined to enjoy ourselves while we can. It may seem strange to say that
despite my illness, or more accurately because of it, I am having the time of
my life right now. And I intend to carry on doing that for as long as I can!

This is just a brief update to let you know that we have had our regular three monthly oncology appointment today.

We did things slightly differently this time in that the nurse rang me to let me have the blood test results a couple of days before we saw the doctor. I am not sure if we will do that again as it meant we had to decide what the results meant on our own. Unfortunately, the PSA level, which is the main marker for the cancer has risen. It had gone up very slightly last time to 0.53 but today it has now almost doubled to 0.98. We had hoped that it would stay at the lower level for quite a bit longer.

We had an emotional day on Monday coming to terms with the increase and trying to decide what it means. Plenty of tears and hugs were the order of the day. It took us back to the time that I was originally diagnosed, a sort of empty, lost feeling.

Despite the emotional impact of receiving these results by phone, it did give us the opportunity to think about questions to ask the consultant and, not for the first time, I called the Prostate Cancer UK support line to discuss my situation and ask about possible future treatments. The specialist nurse was able to tell me about several options that my consultant might consider for my next stage and it was reassuring to hear this information. Today our consultant, Dr Woodward, talked us through the results. Whilst she agreed that it was disappointing that the PSA has gone up, she did reassure us that it is still low and that we don’t need to change the treatment regime at this stage. We were interested to hear that she plans to put me on a new hormone treatment called Enzalutamide when she thinks I need another drug to manage the cancer. This may be at the next appointment depending on how I do over the next three months.

So we have completed another treatment cycle and now we can relax and try to get on with normal life for a while longer. One interesting result from the blood test was that my vitamin D level was low. Apparently this is a bit of a national epidemic. Vitamin D is made in the skin from exposure to sunlight and as we don’t see much sun over the winter and with high factor sun creams in use over the summer, a lot of people are deficient in this particular vitamin. In fact the NHS advice is that most of the population should consider taking a vitamin D supplement over the winter. Low levels can cause a long list of side effects including tiredness, bone pain, depression and lowered immune system. Dr Woodward suggested that I start taking a Vitamin D supplement and try and get out in the sun a bit more……..

…….Which brings me nicely on to our plans for next week!

Having enjoyed our very necessary break in the Maldives last October we decided to look for somewhere to take another sun, sea and cocktails break. We felt that the Maldives is a very long way away so we started our search looking for somewhere similar, maybe a bit closer to home. We spent quite some time looking, and found that the only place that is like the Maldives is, in fact, the Maldives!

We have booked ten nights at the Coco Collection island of Bodu Hithi. We are very excited to say the least. I hope you can bear it if we bore you with lots of photos on Facebook (unless you have all deleted your Facebook accounts by now). This time we are hoping to see turtles and dolphins as well as all the countless varieties of colourful fish. Hopefully this trip should sort out my vitamin D!

Here’s a little taster….

I
haven’t posted anything on our blog for a while. It’s not for want of trying. I
have written out a couple of new chapters but then deleted them before
uploading. I will explain why in a bit more detail later on in this blog.
But what it comes down to is that I have been feeling rather negative recently
and didn’t quite know how to put this into words that I would be happy for you
to read. I am pleased to say that I have largely come through this period, but
perhaps I have a new sense of realism about my illness. More about that
later.

We
have quite a bit of news to tell you about.

The
first and obviously the most important is that it was my birthday at the
weekend!

I had the most brilliant day spent with close family and friends. We
booked a cottage in rainy Wales for a few days as it was Ellie’s final end of
course exhibition at CAT (Centre for Alternative Technology) where she has been
studying intensively for her part two architecture degree. Ellie’s final
project was based on educating the public about plastic waste which is a very
current news topic.

The amount of work and the standard of presentation from Ellie and all her fellow students was incredible. For those of you who have not heard of
CAT, it is a cross between an environmentally forward thinking university
and a vegetarian hippie commune. It has suited Ellie perfectly for the last 18
months.

We had a lovely meal out on my
birthday. This is a photo of us in our cottage just about to go out.

From left to right we have Gary,
Chris, Maurice, Me, Bim, Ellie, Connor, Jeanette, Dan & Keith. I was so
touched that everyone could join us.

Now
I’ll tell you a little bit about how I have been feeling recently. This really
started about a year ago when I decided to try and make the most of every
situation and maintain a positive attitude all the time. This approach may have
helped for a while through a difficult year with chemotherapy, then my mum’s
death in the summer followed by a pretty horrible finish to my career at
Framingham College. The problem this approach created was that I did not feel
able to talk about the ever present and obvious worries I have about the
future. Because I wouldn’t talk about these things, this meant Bim could not
either. I had effectively bottled it up which actually was not healthy.

This ‘positive’ approach finally
failed a couple of weeks ago, and we had a very emotional few days bringing
into the open all our fears and negative feelings. Despite it being very
difficult talking about these fears it has done us both the world of good to
bring it all out in the open. We have even decided to attend one of the
prostate cancer support groups which meet each month.

This was all just before our latest
consultant appointment. We both get very tense before these meetings, knowing
that at some point the news won’t be good. However, this time the results from
the blood test were all normal, so we can relax again for a while. We will have
to go through this again in another three months.

That’s all for now. I would like to
thank you for continuing to read these blogs. I will try not to leave it so
long until the next one.

This is just a short entry to mark our one year anniversary
of living with cancer. It’s been a pretty traumatic year to say the least.
However, right at the moment I am enjoying myself immensely.

As you know I left my job at Framlingham College at the end
of the summer. At first it felt quite strange knowing that I did not have to go
to work and I felt a bit lost as to what to do with myself. That feeling didn’t
last long at all! We have discovered a new found interest in going away on exotic
holidays and I am finding that I have time to do many of the things I never
have been able to. It really is a sense of freedom that I don’t think I have ever
experienced before.

Mental health is in the news quite a bit at the moment and
the combined stress of a cancer diagnosis and treatment, combined with trying
to hold down a full time job cannot be underestimated. It is this time in your
life that you need to rely on support from your friends, family and employer to
help you through a most difficult period. I would like to say thank you to
everyone who has helped us both get through the last year. So thank you!

I have been thinking about what to do as a part time job and
have come up with a few ideas. So far these have been.

·
Local handyman for the village.

·
Set up a monthly cake and old fashioned pudding
club.

·
Bed & breakfast, (Nicky’s suggestion). First
booking in May I think Nicky?

·
Volunteer worker at a lunch club.

·
Catering consultant for local schools.

·
Relief chef in local care homes.

I was keen to try out the catering consultant role and have
set up a website offering management support to local independent schools. Have
a look here if you are interested. I really enjoyed putting a simple website
together. I started to send this to a few schools, but I then realised that I
am not sure if I really want to follow this through. Sounds a bit too much like
hard work!

I have spoken to a couple of local care homes to see if they
could offer me some casual chef work, covering for holidays or sickness. I have
had a very positive response and have been taken on by two different companies
to cover five homes. I have my first shift next Thursday. I am really looking
forward to it and if I am honest, just a little bit nervous. Will I remember how
to cook? I will let you know how it goes.

We are going to ‘celebrate’ our anniversary tonight with a gin or two. I think we may have a reputation as we are now up to 13 different gin varieties in our fridge. It is a real problem trying to decide which one to try next. It’s a hard life!

I think that’s all I have to say for today. Thank you for
following our blog, it’s great to see how many people read it, right across the
world.

Cheers Everyone!

Well it’s time for a bit of a holiday blog update.

We had intended to write a blog while we were in the
Maldives, but we just couldn’t find the time to write it. There were so many
cocktails to sample and delicious food to eat that we ran out of time!

We originally started writing this blog as a way of keeping
everyone updated about my cancer diagnosis, so I will just mention that I am
feeling as well as I ever have. I have no symptoms and am enjoying my spare
time to the full, especially now that I have left my job at Framlingham College. I won’t
see my consultant until next year, so for the time being I am keen to
forget that I even have cancer.

Anyway, back to the holiday. I am going to post this as a
trip advisor report as well as a blog, so forgive me if it sounds like a
holiday report, because that is what it is.

Basically, we had an amazing time! I could leave it at that, but that would mean
I wouldn’t be able to tell you all about the island paradise we visited.

We stayed at Hakuraa Huraa which is a six acre
island with individual chalets built out over the lagoon, arriving after dark following a long flight from Heathrow, via Colombo in Sri Lanka. We had an
amazing seaplane flight to take us to the island. Even though we were tired at
the end of our journey this was great fun. We were welcomed with a cold beer in
reception while we were given our room keys and details about our stay which
was a perfect way to start relaxing.

The whole holiday was a perfect mix of peace and quiet,
excellent food, sun, snorkelling, a little bit of exploring with a visit to a
residential island, and, of course – Cocktails. We even both had a one hour
Balinese massage, which was the first massage I have ever had. I was unsure
about it beforehand, but I really enjoyed it. I felt totally serene afterwards.

We stayed in a water bungalow, built on stilts above the
lagoon with steps straight into the water. This meant we could go snorkeling
directly from our room which was a bit of a novelty.

A good proportion of our time on the island was spent just sitting on the
beach reading. It feels such a luxury to have the time to just sit. We quickly developed
a holiday routine of relaxing with a book during the morning then wandering off
to the bar for a cold beer or cocktail followed by a leisurely lunch. The food
was one of the high points for us. Plenty of fish and lots of really tasty spicy
dishes. I renewed my acquaintance with chilli omelettes for breakfast which was
something we first discovered 27 years ago on our last visit to the Maldives
for our honeymoon. The most memorable dish we had was fresh grilled reef crab.
It was messy and difficult to eat, but it was so soft and sweet. Just delicious
and unlike any crab we have had before. It would be worth going back just for
that. (More about that later!)

We did know when we booked that we were going in the rainy
season, so we were not surprised to have some rain and they were serious downpours.
The hotel supplies all the rooms with long waterproof coats and life jackets
which we have not seen before. Presumably the life jackets are in case of
tsunami which is reassuring, until you see the tsunami assembly point is only
about 30m from the beach. But the island is tiny and that is about as far from
the sea that you can get. Anyway, we did use the waterproofs, but luckily did
not have call to use the lifejackets! Interestingly the temperature stays at
about the same 29 – 31c the whole time, whether it is day or night, sun or rain.

We had great service from all the staff for the whole 9
nights. Some of them are more friendly than others, but it seemed like they all
genuinely want to make your stay as good as possible. Having been in catering
all my career I do know there is such a thing as a professional catering smile,
but they all carried it off very convincingly. It all added to being able to
completely relax. One of the bar staff was very friendly and seemed keen to
walk along with his arm around me as he showed me to the bar. I was slightly
taken aback, but oh well, I can’t blame him really!

We had great fun snorkeling. This was either straight from
our water bungalow, from the beach or on one of the twice a day free snorkeling
trips. There are so many colourful fish to see. They don’t seem worried about
you being there and just swim around you. We bought a Gopro waterproof camera before
we went and had fun trying to film underwater with it. I think our best
achievement (for a couple of oldies) was an underwater snorkeling selfie
video.

Did I mention we enjoyed the cocktails?
There was a long list of cocktails to choose from and we tried most of them! We
both enjoyed the Hakuraa Island Iced Tea, but Bim’s favourite was a Zombie,
which is a rum based drink and I loved the dry Martinis. Lots to choose from
and we had great fun trying them.

One last thing to tell you about was our trip to a
neighbouring residential island. This was a boat ride away, and gave you an
idea of what it is like to live and work in the Maldives. We had a good walking
tour around the whole island and were shown in the local hospital, saw the
school, visited a couple of local shops and a fish market, although it had
closed when we got there. As soon as Bim saw the fish market, she started
looking behind the scenes, taking photos of the equipment and even the staff
loos! She just needed her white coat and hat on to be completely at home.

One of
the unexpected highlights of the trip was seeing all the different beautiful
flowers that grow there. We feel inspired to try and grow some here.

I could go on, but that’s all I am going to tell you about our fantastic trip to
Hakuraa Huraa, other than we are now planning a return visit to the Maldives,
hopefully in April next year.

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.