Our Story

I have been meaning to write an update for a while now, and for some reason have found it difficult to make a start on this one. I think the main reason is that we have been really quite busy recently. I will give you a run down of our activities a bit later in the blog, but will start with a brief health update.

As you will know from reading previous bulletins we normally have an oncologist appointment every three months which are mostly focussed on how the PSA level is doing and how I am feeling. When I was first diagnosed in 2016 the PSA was at a high point of 27. Since then, with the effect of the chemotherapy, ongoing hormone therapy and the trial drug, Metformin, it went as low as 0.4 in September 2017. Even though we try not to worry before my blood test, it is impossible not to get a little apprehensive about the results. I had my blood test a few weeks ago and the PSA level this time was 3.48. This figure is actually still really low, but as it had risen from 2.87 at the last test I did have a bit of a downer for a few days afterwards. Having gone through this three monthly cycle several times now we do know that our emotions are going to be a little erratic around this time and it can take a day or two to come to terms with the latest results. On this occasion we did not see the oncologist, just a telephone conversation with the trials nurse confirming that we will carry on with the current treatment. So, for the time being life carries on as normal.

I mentioned earlier that we have been busy recently. I continue to work two days a week at a few different businesses locally, which I find fun and rewarding. I know it’s cliche, but I really don’t know how I was ever able to work full time, there is so much else you can spend your time doing!

We are very happy that Bim has now been able to drop a day at work and is working four days a week. It’s great to have the extra day together.

What have we been up to since our last blog? Well, holidays of course!

We had the most amazing time in the Maldives in April. This time visiting Amari Havodda at the southern tip of the islands. It was simply stunning. As words can’t really explain just how beautiful the island is I have added a few photos below. I think seeing so many dolphins and snorkeling with turtles were the high points for us both.

We were not home for long before we were packing our holiday bags again. This time for the North West Coast of Scotland, which is somewhere we have wanted to visit for a long time. We booked The Net Store, which is an excellent cottage right on the shores of Loch Beag on the Applecross Peninsula. We were pleased to be joined by good friends Maurice and Gary for most of the week. For anyone who remembers the film Local Hero, the area we stayed in had the same sort of feel. Very remote, stunning scenery and everyone seems to know everyone else. We really enjoyed the trip and may return next year if we can fit it in. Again, I have added a few photos below.

That’s all for the moment. We have our next oncology appointment at the end of August. We will let you know how it goes. In the meantime, we are following the principal of ‘work less, laugh more’. I thoroughly recommend it!

Just a brief update on a recent drama.

Sometime before Christmas I saw my GP regarding a few
palpitations I had been having. I had a short ECG and was then recently referred
for a twenty four hour ECG. I had this last week and have been waiting for the
results. Being told you have something wrong with your heart is troubling. You start
to worry that it’s not beating properly, or that any pain or twinges might be a
sign of something worse. This is all on top of the worries about the cancer
spreading.

I have been quite busy at work recently and did a twelve
hour shift on Friday which left me aching, to say the least. I worked a
standard eight hours on Monday, and then having come home I was sitting at the
computer when I had a sudden and severe pain which started in my back. I have
often suffered from back pain, as most chefs do, but nothing like this. I
actually ended up rolling around on the floor trying to ease the pain to no
avail.

Things started getting worse with the pain spreading across my
back and into my arms. I was feeling light headed and went from feeling very
hot to really cold. I have never suffered a heart attack, but was convinced
this is what was happening to me. I was just at the point of calling an
ambulance when Bim came home, so we dashed into A&E at West Suffolk Hospital.
Given my symptoms, I was seen almost immediately and taken through to have an
ECG and blood tests. The ECG results were normal with no signs of anything
worrying. The blood test results take longer, but I started to relax a little. I
was then examined by a doctor who again confirmed that he could find nothing
wrong with my heart. I still had the pain in my back, but by this time it was
not down my arms. I was then sent for a chest X-ray and we were moved to the
Clinical Decision Unit to await further results. This was like being upgraded
to Business Class from economy! We had reclining seats and a nurse brought us
tea and biscuits.

Having ruled out any immediate heart problems, the doctors
were then focussed on what else was causing the pain. I had further blood tests
and a spinal X-ray. We were in A&E for about eight hours in total. Just
before one in the morning we were seen by the doctor looking after me and she
went through all the results they had found. She was able to rule out all of my
concerns regarding heart or lung problems and confirmed that it was not an
Aortic Dissection. This was something I did not know about, but it sounded
particularly horrible when she explained it, so it was just as well that I did
not realise that is what they were looking for.

This just left one worrying potential diagnosis for what was
causing my back pain which was Metastatic Spinal Cord Compression. This is
where the cancer in the bone grows and puts pressure on the spinal cord which
can be very painful and has serious outcomes including paralysis. The doctor
said that we could go home but I would need to see my Oncologist to check if I
would need a CT or MRI scan to check for this condition.

So! We went into hospital thinking I was having a heart
attack and came out thinking I was going to become paralysed.

Needless to say I arranged to speak with my Oncologist the
next day. She has now investigated all the results further including all the
blood tests and the research nurse rang me today to confirm that there is no
possibility of the cancer having spread to my spine. Apparently she could tell this
from checking the levels of Alkaline Phosphatase (ALP) which was well within
the normal level. The consultant suggested that the pain could have been a
muscle spasm, or possibly even indigestion.

What does all this mean?

The first thing is that we are not going to have to cancel
our trip to the Maldives at the beginning of April. The second is that I am not
going to agree to any more long shifts at work.

That’s all for now. Our next blog should hopefully include
lots of photos of beaches, cocktails, turtles and dolphins.

In true London bus fashion, we’ll do another update even though
John posted the latest news last week.

My last blog was after our oncologist appointment in
December, which left us feeling rather deflated (see Dec 18 post). I don’t know why, but we haven’t been quite
so anxious in the preceding few days before this appointment. Maybe because John is still feeling well, and
we have accepted that the PSA will have reached a level to warrant a change in
treatment. Who knows? We set off this morning in glorious warm
sunshine, with the temperature showing 17˚C – bizarre for February. The usual checks were carried out by the
trial nurse; blood pressure – normal; weight – 2kg lighter than three months
ago (marvellous result – happy with that); waist measurement – no change. The long questionnaire which is used to
evaluate the trial drugs was completed with truthful, positive responses for
how John is feeling. We went through to
see the oncologist on time. We almost
dread being told what the PSA level is, and as John said last week, we were
expecting it to have risen to around four.
Today’s result: 2.87 – 0.03 LOWER
than 3 months ago. 0.03 is indeed a
very small, and some may say insignificant number, but it IS significant in
that it’s a decrease, which was not expected.
We had to ask for confirmation in case we had mis-heard the result. The consultant seemed suitably impressed too,
and explained that it’s quite unusual to see a lower number at this stage, so
we should indeed be very pleased. We
have to accept that the level will most likely rise in 3 months, but in the
meantime we will revel in the delight that a reduction of 0.03 brings!

In contrast to the last appointment where we felt very
rushed, we were able to ask questions today, such as: when a new treatment is
introduced are we likely to see a drop in the PSA level [there’s no telling
really – if it does bring the level down – hurrah!]; is another round of chemo
possible when the PSA starts to rise more sharply [yes, it won’t be ruled
out].

John will continue on the Metformin trial and have another
blood test in 3 months, and depending on the results may not need to see the
consultant until 3 months after that (ie go to 6 monthly appointments with
monitoring blood tests every 3 months).
Next week he has a 24 hour ECG monitoring to check for a possible
irregular heartbeat, but we’re not getting unduly concerned about that.

So we are pleased to confirm that after a ropey appointment
in December, normal service was resumed today, and we certainly left the McMillan
unit with a spring in our step.

We’ve celebrated by ordering a pink velvet Chesterfield
sofa, and will be partaking in a small G&T on a school night – has to be
done!

Happy days.

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.

When we started this blog almost 2 years ago, I thought it
would be me that would be posting the updates.
As you may know, John is not known for his like of letter/card/email
writing, so I have been pleasantly surprised at how much he has embraced
updating this blog. So much so that I have
contributed to very few. So, time for me
to post an update.

We had our 3-monthy consultant’s appointment on
Wednesday. We continue to get quite
anxious in the run-up to these appointments, and I don’t think that will
change. All hinges on the dreaded PSA
level which in an indicator of the cancer’s spread. At the last appointment the PSA was 2, and
this week it has risen to 2.9. Any rise
is a disappointment, but we have to accept that the level will rise over time
(possibly doubling every 6 months). We anticipate
that when it gets to about 4, John will be offered another treatment option, which
may be in 3 – 6 months’ time. We have
also come to realise that we shouldn’t focus so much on a number, but the more
important thing is how well John is feeling, which at the moment is pretty
good. We have always been impressed with
the care and treatment that we have received at the McMillan unit in the
hospital: the consultants, nurses and clinical trial staff have always been
very supportive, patient and caring. By
contrast this week we did feel that we were almost imposing; the staff seemed
short of time and keen to usher us out with a ‘Have a good Christmas – see you
in 3 months’ time’. John had to ask
several questions as we were being ushered out, which was disappointing. We can only hope that the staff were keen to get
to their Christmas party and normal service will be resumed in the New Year. It’s possible that the appointments will be
extended to every 6 months in the New Year.
Bizarrely, even though we don’t look forward to the appointments, we
aren’t keen that they are less frequent as it’s reassuring that the battery of
blood tests should detect anything that needs attention quickly.

You may have seen a report this morning that prostate cancer
testing has increased this year thanks to the ‘Turnbull – Fry’ effect. Both Bill Turnbull and Steven Fry have been
high-profile prostate cancer sufferers this year. Steven Fry has been successfully treated, and
Bill Turnbull was diagnosed with stage 4 (the same as John) last year. He has campaigned for men to visit their GP
if they experience typical prostate symptoms, as early detection (I’m sure you’re
all aware) is vital for a positive outcome. So I will now have my rant: all you
lovely men of a certain age (we are told over 50) – get to see your GP pronto
if you notice you have to go to the loo more frequently; get up to go to the
loo during the night, or take longer to empty your bladder. And all you lovely ladies – badger your
lovely men if you suspect that they may have any of these symptoms, and get
them off the GP without delay. In
hindsight, John’s only symptoms were feeling a bit tired, and maybe taking
longer to go to the loo. Get your
stopwatches out now: on average it takes 21 seconds to empty your bladder. Maybe share that gem of info with family and
friends on Christmas Day!

When John was first diagnosed we did an awful lot of research
and reading-up on cancer, treatment, research and all things related. (Note: stick to UK official sites only and
never drift into the whacky world of US sites).
Naturally the subject becomes all-consuming. We now
tend to do little reading on the subject.
I can honestly say that there isn’t a day that we don’t think about John’s
illness, and the future, but on the whole we tend to try not to focus on
it. We allow ourselves a couple of sad
days every now and then, and then pick ourselves up and get on with it. We have said before how important it is to
live life to the full, and looking back on the year, we have had a jolly good
stab to achieve just that; we’ve had some fabulous times and made some
wonderful memories.

Christmas this year will be celebrated with Dan, Ellie and Connor,
and mum and dad. We’re already planning
trips away in 2019 and will be kicking off with John’s Birthday in January with
a trip to the Cotswolds. Another
Maldivian paradise island (Amari Havodda) calls in April, and in May we will be
exploring the remote western coast of Scotland – something that we’ve wanted to
do for a long while. Don’t put things off, lovely people – seize the
opportunity and make fantastic memories.
Happy Christmas to you all. xxx

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….

We first started to write this blog with the intention to
keep everyone updated with John’s treatment as it was becoming difficult (and
draining) to regularly phone/email family and friends with personal
updates. We have been quite touched with
feedback that we’ve had from people (some who we have never met or spoken to
before) saying that our accounts have been informative and helpful to
them. Having gone through the chemo
treatment we realise that the purpose of the blogs has now evolved, and,
although we are not posting as frequently now, it actually helps us to put into
words how we’re feeling.

As John said in his last post, up until a few weeks ago we had
got to a stage where we were not being honest and open about our fears for the
future. Our aim to remain upbeat and
positive came at a cost, and eventually resulted in a break-down weekend which actually
did us both the world of good. Since
then we have found that it helps to allow ourselves to have what we’ve come to
call ‘a moment’ which consists of a few words, a cuddle, a few tears, a giggle
and then back to normal. When John was
first diagnosed we knew that he needed to train me up in how to deal with all
the things that he routinely does, for example banking, paying bills, passwords
for many things, and numerous maintenance tasks that he actually enjoys (so I
don’t need to). We both found this very
difficult and as a consequence put my ‘training’ on the back burner as we both
found it too painful. We now find it
easier to address things as they happen, and I’m gradually learning how to do
things (that makes me sound like a precious, incompetent flaky who never does a
thing!). In his typical organised way,
John is compiling a house maintenance manual for me. A task this weekend was to
change the fridge water filter. John
calmly showed me the slightly tricky technique to get the filter in place and
commented that I’d remember the conversation in years to come. That brought on ‘a moment’, which led into
another as I was transported into the future, facing a solitary ‘moment’ with no
one to have the important cuddle with.
Things like that are scary.

Another consequence of our situation is insomnia. Neither of us sleep too well now, and feel
very pleased with ourselves if we wake in the morning having slept
through! So, a few random thoughts that
we deal with in the wee hours:

·
DON’T PUT THINGS OFF. I’m sure we’ve all heard of people who face
life-changing events that say ‘live life to the full’. We say ‘of course – good advice’, but then
carry on as normal. You have to face a
life-changing event to understand that statement and actually do something about
it.

·
We spend our lives being so busy with work. We get into the habit of saying ‘yes’ to
work, to the detriment of personal time, enjoyment and fun. It’s too easy to feel exhausted by the time
the weekend comes, and then spend time recovering and doing chores ready to
launch into the next week. We now say ‘no’
to work more, and don’t find reasons to not do fun things. That’s not to say that we don’t put in 100%
at work, but just less of it. John is
loving the freedom of not working full time and having fewer dreary
commitments. If possible give it a go –
it’s great!

·
Miserable, negative, needy people are
draining. Best avoided.

·
Was it Anthony Hopkins that said ‘no one is
getting out of here alive so you’d better enjoy it’? How right he was.

·
Be nice to each other. I now get very irritated when I see couples
arguing or being nasty to each other.
Have a cuddle – spread some love, and say ‘I love you’ more.

·
America is doomed. I’m afraid I’m lost for words when 17 innocent
lives are taken, and the argument from the US is that gun control won’t work, giving
an incomprehensible reason that ‘well you can kill someone with a pencil’. My fear is that their warped answer is to arm
teachers and students to defend themselves.
There is no hope for a country that has corrupt politicians funded with blood
money from the NRA. Thank the lord that
we are on the civilized side of the pond.
I will have to leave that (worryingly unwinnable) fight in the capable
hands of lovely Nicky Douglas – what a thankless task she has.

·
Holidays are great – the more the merrier!

·
Appreciate and respect nature.

·
In an utterly bizarre way, we sort of feel lucky
to know that we have a few years to live life to the full. It’s too easy to just tick along and put
things off for the future. You could
drop dead tomorrow and never get the chance to do all those things that you’ve
been putting off. Do it now.

·
Drink more red wine.

·
It’s too easy to feel the need to squirrel money
away for a rainy day. If the rainy day
comes don’t be afraid to spend it. Our
rainy day has come, so we’re going to put up a robust umbrella, don our bright
coloured wellies, and have great fun splashing in the puddles.

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.

John’s last blog was to mark the first anniversary of his
diagnosis. Without wanting to have too many
anniversaries, today was another day of contemplation as it was the first
anniversary of his stage 4 diagnosis. We
didn’t want to ponder this for too long, so I took the day off and we headed
over to the coast for a good old walk along the beach at Southwold.

John continues to feel well, and is still kicking his heels
up not having to turn out to go to work on the dark mornings. Does he miss the daily grind? Not one bit!! He’s been busy enough just
enjoying doing ‘stuff’, catching up with projects and chores that have been
overlooked for a while, and not having to meet tedious deadlines. That said, he does now have a few bookings in
the diary: he’s doing some temp work in a couple of residential homes, and he
will be working this weekend at the Bury Christmas Fayre as a volunteer
steward. After attending the health and
safety briefing he was thrilled to hear that he has been allocated to marshal
the coaches! I’m hoping this new found
responsibility doesn’t go to his head, and he doesn’t cause mischief by
mis-directing the coaches or getting them to park at jaunty angles.

John has worked a couple of shifts already at local residential
homes. The first was as you’d expect –
decent home-cooked food, prepared in a professional kitchen. The second one was quite a contrast – he was
tasked with making a fruit salad and strawberry cheesecake. When given the ingredients he was not
impressed with being instructed to open 3 tins of fruit salad; chop and add a
pineapple; mix up 3 packets of strawberry Angel Delight and add some cream
cheese. I was very pleased that he did
these tasks and politely departed after an hour and a half. I don’t think there can be much pride or
reward in making up packet food, and in our opinion, the residents certainly
deserve better than that.

Other than continuing to take Metformin daily, and having
the 3-monthly hormone implant, John has no other medical interventions at
present. We do get quite anxious when
the 3-monthly consultant’s appointment comes along, as this is when we are told
what his PSA level is, and if any further treatment is needed or
recommended. As he’s feeling well at the
moment we put it to the back of our minds and crack on!

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.