Our Story

Those of you who have read previous chapters of this blog will probably understand the title without explanation. I really wanted to call it ‘Piss like an Elephant’, but that would be too crude for me! For anyone who may be reading this for the first time, let me explain…

I was diagnosed with stage 4 prostate cancer over seven years ago. At that devastating time we were told I had four to five years to live. Looking back, the only obvious symptom I had at the time was that it was increasingly taking me longer to empty my bladder when going to the toilet. Bim had noticed if we were out shopping together, that if we both used the public toilets (if we were in John Lewis for instance) that she would finish before me. Neither of  us mentioned this as I think we both thought it was just part of getting older. It had been a very gradual  process, which may have been building up over a number of years before I went to the doctor and had the blood test which found the high PSA which led to my diagnosis. 

Since that time I have been on various medications which have kept me alive and basically healthy, but the symptoms of an enlarged prostate had been getting worse over this time. In December 2022, the tumour had grown to a point where it was making it impossible for me to pee properly. Without going into too much detail it meant that I had the urge to go almost constantly, but was unable to manage more than a dribble. I was unable to sleep because I was getting up twenty to thirty times every night. I saw the Urology team at Mid Suffolk Hospital, who gave me self administered catheters so that I could actually get some sleep. I was also put on the waiting list for a TURP (Trans Urethral Resection of the Prostate), but was told there was quite a long waiting list. My Oncologist consultant called this a rebore, which makes your eyes water to think about. 

At this point I can explain the title – The King and I. King Charles has just had the same TURP operation to relieve the symptoms of an enlarged prostate, although I daresay, he didn’t have to wait for more than a year to have his! After two cancellations, (one because of the Junior Doctors strike), I finally had my operation at the end of February. Sadly for the King he has also had a cancer diagnosis, although we don’t know which type. I had excellent care in the hospital and was allowed home the next day. I have to be cautious not to do too much, but I returned to work after a week off and now two weeks later feel that I have almost fully recovered from the operation. I may not be able to quite ‘piss like an elephant’, but the operation has worked wonders. I now only get up maybe once a night and have the flow rate of a much younger man!

Enough about my urinary habits. I expect many of you have already stopped reading at this point, so let’s talk about something else. Firstly my health continues to be good with the latest hormone treatment – Enzalutamide, working brilliantly. My PSA is still low and I am able to carry on life as normal, which of course involves Holidays. 

You knew I couldn’t write a blog without including our latest travel experiences, didn’t you? Looking back I realise that the last blog we published was May 23. I won’t list everything we have done since then, just a couple of highlights.

In September last year we visited my brother, Bill and sister in law, Emmanuelle in their new home in the south of France. We spent a week there and had a fantastic time catching up with them and seeing the local sights. It’s a beautiful part of the world. Naturally Bill and I had to see who could drink more red wine. I have to admit that I really couldn’t keep up, although I did try.

I thought I would mention New Year’s Eve now. We don’t normally do anything special and tend to have an early night. For some reason I was feeling a little down that evening, which is unusual for me, but I was cheered up when Bim brought me a rather good glass of red at 5pm. Things went downhill from there! I’m not quite sure how how this happened, but we ended up dancing around the kitchen until late having both consumed a good quantity of Prosecco (Bim) and red wine (me). Not only this, but for some reason we decided to film it, not quite sure why. Please don’t feel you have to watch, but I have included the rather embarrassing results below.

I think the only other holiday to mention was an amazing five night stay in Reykjavik in January. This was planned in secret to surprise one of Bim’s oldest friends – Nicki, for her 60th birthday. She was in Iceland with four of her friends for her birthday, and then seven more of us joined her to surprise her on the day. It was six months in the planning and it was fantastic to see her face when we were all revealed. Absolutely priceless. We have never been to Iceland before, but what a stunning country it is. The land of ice and fire. I have added a few photos below.

I think that’s all for now, other than to say thank you for reading. In our next blog we will be telling you about a trip to Diamonds Athuruga in the Maldives. We are due to visit in April, so not long now. We are getting very excited.

Well, here we go again with another update – some health news, some travel news and lots of pictures.

Firstly – Health.

As you know by now, our lives are focussed on the three monthly blood tests to monitor my health, and how I am responding to the cancer treatment. We always wait until the results are in before deciding whether we can book another trip somewhere or what other events we can attend. So, we are very pleased that today’s blood test is another good one. The PSA (which is what we tend to focus on) is down again, thanks to the Enzalutamide I am now taking. It is now 3.25, down from 3.93, three months ago. Still heading in the right direction. Our review with the oncology nurse is next week, and as I am feeling well and all my blood levels are looking good we expect to carry on with the current treatment regime for another three months. Good news. We are going to reward ourselves by booking a mini break later in the year – not sure where yet, maybe Portugal this time. Suggestions please.

Since our last blog in March we have been really busy. The main event was, of course that Bim has now joined the 60 club.

We decided to celebrate the start of her 60th birthday year with another trip to the Maldives, this time staying on Vilamendhoo. We were delighted to be joined by good friends, Linda and Benny who flew over from their home in Dubai. We had a fantastic time, the food was great and the snorkelling was the best we have seen.

We have lots more birthday events to look forward to over the coming year, no doubt they will appear in a future blog.

We decided we had to go to London to experience the King’s coronation so had an early start and drove down with friends, Maurice and Gary, arriving before 8.00am. The only place still available was Hyde park. So we sat in the rain watching events unfold on the big screen with thousands of others. It wasn’t the best of weathers but the atmosphere was brilliant. Everyone was friendly and it was really memorable. We made the most of the day and found a great restaurant for a late lunch and then enjoyed shopping in Fortnums.

The coronation was on the Saturday and we were very lucky to receive an invitation to the royal garden party on the following Tuesday. So off we went to London again for another amazing and unforgettable day. We felt very privileged to be there along with 8000 other guests. The Prince and Princess of Wales, Princess Anne and other royals were there. We didn’t get a chance to meet them, but we had such a great time, watching the military bands, eating the excellent food and exploring the beautiful 39 acre gardens. And, of course, taking lots of photos.

One other special event to tell you about is that Bim’s mum, Jeannette, celebrated her 80th birthday last week. We helped arrange an afternoon tea party for friends and family and it was lovely to see everyone together.

That’s enough from me for this blog. Thank you for reading. 

On New Years Eve 2016 we posted our first blog to keep friends and family up-to-date with John’s cancer treatment over the coming months.  Even our naturally optimistic outlook did not allow us to dream that we would be updating the blog 6 years later.  Our first posts highlighted the treatment and side effects of the chemo, and we set out to be truthful and honest about our experiences.  We received supportive comments about our experiences, particularly the description of the chemo side-effects which most people understand to be limited to hair loss and fatigue – not so! Having got through the chemo life ticked along nicely and there was really little to report health-wise in the blog which then developed into regular holiday updates.  Having given up full-time work, John has said on many occasions over the last 6 years that he has never felt so well.

As you are aware, we attend regular oncology appointments where the PSA (a marker of the cancer’s spread) is monitored.  John has shared his PSA graphs in this blog, which shows the expected steady rise of the PSA.  Our consultant, Dr Woodward, advised that when the PSA reached 10, or if it rose sharply, she would look to introduce another treatment.  There is a temptation to ask for any treatment to be given immediately if it can help, but we know that given the limited options; the time span for efficacy of treatments, and anticipated side effects, timing of changing treatments is important.  In September this year the PSA reached 11 so Dr Woodward prescribed a new drug, Bicalutamide which she described as a ‘gentler’ treatment with fewer anticipated side effects.  Earlier this month John had another routine blood test which showed that the PSA had jumped to 17 – the largest rise that we have seen, which to be honest was disappointing, alarming and concerning.  Dr Woodward then introduced the ‘less gentle’ Enzalutamide which comes with expected side effects including fatigue.  She also mentioned possibly having another round of chemo at some point.  John has now come off the Stampede Trial and no longer takes the trial drug Metformin.  Having come off the Stampede Trial there may be other options to join other trials which we need to investigate and research.

In hindsight perhaps neither of us should have been surprised at the rise in PSA, as for the last 6 months or so John has been experiencing a few niggly problems.  I said earlier that we aim to be truthful and honest sharing our experiences, but we have considered keeping some things private.  However, we have come to realise that what is happening is natural, and due to no fault of our own, and if our experiences can help to inform others of the implications of prostate cancer, we ought to share our story.  Dame Deborah James (Bowel Babe) proved that there should be no shame in talking about poo, so we have a duty to do the same for prostate cancer. 

If you don’t wish to hear the details look away now….

About 6 months ago John started to need to pee more regularly and with a little urgency.  This is typical for older chaps, but particularly so with prostate issues as pressure is put on the urethra by the enlarged prostate.  Another drug was introduced to help combat the symptoms which we fondly named Turbo Piss as initially it helped enormously.  The Turbo Piss effect was short lived, and John found that he was getting up many times during the night – every 10 minutes or so, and was unable to empty his bladder.  This became exhausting and debilitating.  We have commented many times before about the amazing treatment that we have received from the NHS.  This treatment has continued and John has been seen at short notice on several occasions – incredible when we hear such negative reports about the NHS which coincide with industrial action being taken.  We can’t fault the service we have received and it feels like we are getting private treatment.  The week before Christmas John was seen at short notice by a urology nurse.  He underwent a urodynamics test which basically involved peeing in a bucket and then having an ultrasound scan which showed that his bladder was not emptying.  To his great relief the nurse showed him how to carry out ‘intermittent self-catheterization’ which he now does before going to bed at night.  It’s a temporary measure, but has been of great benefit and we are both able to sleep better – hurrah.  It does feel like we have suddenly and prematurely entered the realms of ‘old man’s territory’, but it’s still a minor price to pay in the grand scheme of things.  The next step is to have an operation known as a TURP (Transurethral resection of the prostate) otherwise known as a ‘re-bore’.  If any chaps are reading this without wincing at the thought, then you are dead hard and I’m very impressed.  Again, incredibly, John has an assessment appointment with a Urology consultant in the first week of January.  Our NHS is second to none.

These recent issues had little impact on us having a great Christmas shared with nearest and dearest:

As I write this John is doing a stock-check on seeds and is about to place a seed order ready for spring propagation.  We start the New Year with excitement looking forward to John having the ‘TURP’ in good time, and have fingers crossed that it doesn’t affect our holiday plans to celebrate my 60^th in March.  

If you are still reading, we wish you a very Happy and Healthy 2023.  Don’t put things off, and enjoy life. 💕

Well, we have another update for you. As usual this blog will include some health news and a few pictures from our latest holiday travels, this time to the West coast of Scotland. 

There’s quite a bit to tell you about my health and the last two meetings we had with our oncology consultant, so I will start with that.

For regular readers you will know that we are very focused on my PSA level, which is a good indication of how well the cancer is being controlled. For a long time the consultant has said that when the PSA reaches double figures I will go onto an extra hormone treatment – Enzalutamide. This has fatigue as one of the main side effects. The PSA typically rises quite slowly, with a small increase every three months. In March the level had risen more than it has done before and reached 9.92.

We discussed with the doctor whether I should start the Enzalutamide then, but as we were planning a walking holiday in Scotland at the beginning of May, she suggested waiting until our next appointment in June before making any changes to my treatment regime. The next drug will only be effective for a limited amount of time, so we were happy to put it off for another three months.

After our appointment we decided to see if there were any lifestyle and dietary changes we could make that might influence the outcome of the next blood test. I have been taking a food supplement – Pomi-T, since I was diagnosed. This contains pomegranate, broccoli, green tea and turmeric. There was some research that suggests that these ingredients have an impact on prostate cancer growth. It’s not possible to know whether it has helped up to now, but as I have already outlived my initial prognosis of four to five years, just maybe it has. We decided that we would try an experiment with our diet, mainly by adding fresh pomegranate daily, drinking green tea and drastically reducing alcohol intake. 

I had my three monthly blood test last week and the results were great. The PSA had fallen by 8% to 9.11. This was a very exciting result. The level has fallen before, but never anywhere near this amount. Our oncology consultant was equally pleased with the figures. 

As a result I will not need the next treatment at this stage, which we are happy about. The consultant did ask what we had done, so we discussed the changes we had made. She was very supportive and made some extra suggestions to try. She recommended eating more brassicas (broccoli, cauliflower etc) and tomatoes. Apparently brassicas help break down Oestrogen which can promote prostate cancer growth. Tomatoes are a good source of Lycopene which again may have beneficial properties in fighting cancer.

I believe we already have a healthy diet, so making these extra changes will not be a problem. Reducing my wine intake is the main challenge, but I do actually feel better for not drinking so much, so I will carry on with that, and just have a glass of wine (or two) on special occasions.

The consultant did also suggest trying to eat organic produce if possible, and something we had not heard of before which was to try and avoid food coming into contact with plastics. Plastics can shed compounds that are similar to synthetic Oestrogens, which, again may promote the cancer growth. We will do some more research on this and see how we can achieve this aim.

One of the early warning signs of potential prostate cancer is difficulty urinating. This can be a slow flow, getting up several times during the night, a sudden urge to go and not being able to fully empty your bladder. I have experienced these symptoms and they have been becoming gradually more pronounced. I had to get up seven times one night recently, which as you can imagine leaves you feeling very tired the next day and not really able to function normally. I explained all this to the Doctor and she prescribed me a drug called Tamsulosin, which I will need to take daily. It’s amazing! After two days I am pretty much back to normal and I only got up once last night. The drug is marketed as Contiflo, but Bim has rather crudely renamed it ‘Turbopiss’. Which I have to say is pretty accurate. 

I think that’s all we have to tell you about my health for now. Thank you for reading this far. As a reward I have included an up to date PSA graph.

Now, as promised, holiday news.

In May we made a return trip to the West Coast of Scotland, staying at the Net Store again. We were delighted to be able to take Dan, Ellie and Connor with us this time, which is the first family holiday we have had together in a long time. 

We enjoyed some beautiful scenic walks through the hills and around the Lochs. If you haven’t had the chance to visit this area, I really recommend you try to fit it in. You won’t be disappointed.

As you can see, I have added a few of our favourite photos from the trip.

When John was diagnosed in 2016 at the age of 54, he was given a 4- 5 year life expectancy.  He set a goal that he would like to reach and celebrate his 60^th birthday, which at the time I think we both silently thought may be overly-optimistic, but goals and targets were then, and still are, so important.  Back then when we dreamed of reaching 60 we both expected that John’s health would have deteriorated significantly given the grim prognosis.  Goodness me, how wrong we were! It’s utterly bizarre that John often says that he feels better now than he did pre-diagnosis.  Does that have something to do with exiting the rat-race of high-pressure employment and embracing living life to the full?  Who knows.

You will know from the last blog that we were hopeful that we would finally get to the Maldives for John’s birthday in January, having been cancelled 7 times due to COVID.  Hallelujah and praise the lord – we did it!!  We were given the go-ahead from the consultant who it seems is interested to hear where we have been prior to each of our appointments with her. The night before we departed we were treated to a fabulous recording that Dan put together of friends and family from all around the world sending messages and birthday wishes to John.  It was heart-warming and humbling to see the wonderful messages, which (surprise surprise) made us cry.

We set off for Heathrow on John’s birthday wearing ‘It’s My Birthday’ badges, with our customary optimism hoping for an upgrade to Business Class.  Qatar check-in staff couldn’t really be expected to understand the significance of this trip….we turned right when we got on the plane. It’s a pretty gruelling journey to get there – about 26 hours door-to-door including a change in Doha, then an hours domestic flight in a small propeller plane from Male, (the Madives capital) to Kaadedhdhoo, a tiny airport island in the Gaafu Dhaalu Atoll.  After a 20 minute speedboat trip we arrived at Amari Havodda and really felt like we had returned home to old friends.  We received a warm welcome and recognised many of the staff that were there in 2019, and the fantastic hospitality continued throughout our 12 night stay.  We have such wonderful memories of our previous stay and were slightly concerned that the reality of a return visit may not live up to our expectations, but this certainly was not the case.  The staff are a credit to the resort and could not do enough for us.  We enjoyed fabulous food, thanks to extra-special attention from the wonderful head chef Rakesh.  We snorkelled every day and were fortunate enough to swim with many sharks, rays, turtles, octopus and a vast array of beautiful tropical fish.  There are encouraging signs that the reef is looking healthier with some colour returning to the terribly bleached corals.   An advantage of visiting an island which is so far away from the capital is that it is incredibly peaceful with no planes overhead, or noise from neighbouring islands, and very little pollution.  The sea is pristine and when the wind and tide is calm is feels like swimming in an aquarium.  Staff on the island are passionate about protecting the environment and are seen daily sweeping the beaches of debris.  Sadly, on most days we still picked up a number of plastic bottles, wrappers, glass, and broken floor/wall tiles which will have come from far away, and only washed up on the pristine shores when the tide decided it was the right time to deposit them.  It did make me feel ashamed of how we treat the planet, and how people have such disregard for nature and the impact of their actions.   We try to do our bit, but with our renewed love of travel I do wrestle with the guilt of our increased air miles, but for now I don’t have an answer.  So we’ll continue to wrestle with our conscience whilst enjoying life to the full with our holidays, and act as responsibly as we can.

It does now feel like we are coming through the last two years of COVID madness that has put all of our plans on hold.  It’s been difficult for us knowing that we have a limited amount of time to have been in forced lockdown for two years. It’s now all systems go and we’ve got lots of trips, visits and overdue meet-ups with family and friends in the calendar for 2022. Bring it on!

John has put together a video of our trip to Amari Havodda which you can see, below.   It’s 15 minutes long so pour yourself a Pina Colada, put your sunnies on and soak up some of the atmosphere and sunshine that we enjoyed so much.

I think the title sums it all up. Nothing very much has happened since our last blog.

Health first.

It is now six months since our last appointment with the oncology consultant at West Suffolk Hospital. Over that time very little has changed. I still feel perfectly well, other than being more tired than I used to be, but as we have said before that could just be down to growing older. 

Despite the pandemic I have continued to have absolutely brilliant care from both the hospital and our local GP surgery. One of the unlisted side effects of having an advanced cancer diagnosis is that it has turned me into a bit of a hypochondriac. In the past I rarely saw the doctor, but now if I have a new and unexplained ache or pain, I find that I cannot settle until I have spoken to a medical professional. As a recent example, I had back pain a few months ago that I could not shake. I tried some Pilates exercises, which I found helpful, but the back pain remained. One of the benefits of being on a cancer drug trial is that I can call one of the research nurses and chat with them about anything that is worrying me. On this occasion the nurse discussed my concerns with the consultant and booked me in for an xray the following day. They called me with the results a couple of days later, which showed just standard wear and tear (or age related degenerative changes). As soon as I knew the reason for the pain, I stopped worrying about it and thankfully it has now largely disappeared. 

I won’t bore you with any more examples, but there have been several like this and each time my GP or the hospital take me seriously and give me prompt and caring attention. I couldn’t ask for better.

We have just had our six monthly meeting with the oncology consultant. As usual we are always tense beforehand. We received the results of the blood test last week. This time the PSA, which is how the growth of the cancer is measured, has risen to 7.6. Whilst this is still relatively low, it is the largest rise we have seen, so we were both a bit fed up for a while.  Dr Woodward has booked me in for a CT scan, which I will have just before we see her again at our next appointment in three months. Surprisingly this will be the first scan I’ve had since I was diagnosed in late 2016. Previously, she has said that I may start an additional treatment when the PSA reaches double figures. This may not happen until next summer, or it might be when we see her in September. We will let you know how it goes.

Good News!

While writing this blog we have received the excellent news that my Nephew, Luke and his partner Jenny have just had their first baby boy. Welcome to the world, Oscar Patrick Betham. Congratulations to you all. We can’t wait to meet the new addition to the family.

Work

I continue to  work at a local care home occasionally. I cover sickness and holidays, which I find is enough most of the time. I enjoy working there as they only have a few residents, so it is like cooking for a large family.

I have also worked a few volunteer shifts, helping with the vaccination roll out. This has mainly been welcoming and booking in those coming in for their jabs. It is always a really positive atmosphere. Everyone seems so happy to be getting their vaccinations, although there are several who are quite nervous as well.

Bim has continued to work all through the Pandemic. She is relieved that she can now start to inspect all the businesses on her patch again, having been unable to during all the lockdowns. Not surprisingly she has already found a few dirty kitchens that have fallen below the required standards. It will take quite some time to catch up with the backlog. 

On a positive note Bim has now been permanently granted her 4 day week which we are very pleased with. It will allow us to spend a bit more time together doing the things we enjoy.

Travel

As you know by now, this blog started out as a way of keeping friends and family up to date  about my health. This quickly changed into a travel blog as well, after we re-discovered holidays. Along with everyone else in this country and abroad, holidays have been in short supply over the last 18 months or so. We had a dream trip to Amari Havodda in the Maldives booked for April 2020. Not surprisingly, this has been cancelled and rebooked several times since then. It has now been moved to September this year. This is the sixth time it has been changed and hopefully we will be able to get away this time. Happily our oncologist has given her blessing for us to go. With the future treatment for my prostate cancer being uncertain, we are determined to make the most of these opportunities while I am still healthy enough to do so. 

We are very pleased that the restrictions on seeing friends have at last been lifted. We have been busy catching up with seeing everyone again. We enjoyed a lovely few days with Ellie and Connor visiting us, along with Connor’s mum and husband, Tracy and Garry. It was great to be able to have  guests at last and I enjoyed cooking lots of vegan food for everyone.

We have also caught up with Chris for a weekend, Ruth & Russell, and Richard & Helen for lunch and we had a relaxing few days staying with Maurice & Gary in beautiful Shropshire. I have to compliment Maurice on his cocktail making skills. The Pina Coladas were fantastic!

Here’s hoping that life will get back to some sort of normal soon. 

Keep healthy everyone.

21^st November 2016 is a day that I will never forget. Three weeks previously John had been diagnosed with prostate cancer, and in the weeks that followed various tests and scans were carried out in order to determine a treatment plan.  While waiting to be called in for our appointment I remember reading an email from a colleague who sent through a link for a job at West Suffolk Council (which I subsequently applied for and got). When we now go for check-ups in the McMillan unit I always avoid sitting in that same seat. We were called through and introduced to the consultant and nurse – we were our usual upbeat selves.  Very quickly the consultant informed us that she was sorry to say that the cancer was stage four and had spread to the lymph nodes and hip.  There were no treatment options, and she suspected that we would like to know how long John had to live.  We looked at each other in complete shock and didn’t have time to reply before she told us ‘four to five years’.   I remember the consultant’s fringe being slightly too long and she had to keep pushing it out of her eyes.  We were then ushered into a family room and left on our own to digest what we had just been told.  We waited for blood tests to be carried out and sat in silence in the canteen with a coffee.  I remember wondering if people were watching us and if it was evident that we had just been given devastating life-changing news.  I remember feeling physically sick, and in complete disbelief that this was happening to us.  We were given various information leaflets (completely miss-timed ‘Prostate cancer and your sex life’) in a black plastic wallet (black seemed a very cruel colour).  I burned the leaflets and black plastic wallet.

In the days that passed we were numb and truly terrified of what the future held.  There were days that we would lay on the bed (having not slept at night) and both sobbed uncontrollably for hours.  For two weeks I could not speak to anyone, so it fell to John to inform people of our ‘news’.  I could only communicate with friends and family via text and email.  I struggled to piece together an application (for the West Suffolk job), and have no idea how I managed to string two comprehensible words together at the interview.  John and I had both been signed off work for a month (GPs were brilliant and realised that we were incapable of working).  We bumbled along and occasionally escaped to Waitrose, but I dreaded meeting anyone that we knew for fear of breaking down in public when asked how we were.  I remember getting so annoyed seeing older couples arguing and speaking horribly to each other, and wanted to tell them how lucky they were to grow old together.   Christmas came and our normal routine seemed….normal.  We accepted that we had to work through those few weeks of utter desperation to come to terms with the situation. John commented that we couldn’t go on being miserable.  It is all too easy to worry about tomorrow and in doing so waste today.   Our daily routine involved responding to messages and emails from lovely friends and relatives, and we realised that when we returned to work in the New Year, time would not permit us to invest as much time in keeping people up-to-date, so on New Year’s Eve 2016 we started this blog in order to keep you all abreast with what was going on.

As you know, John underwent chemo (he was so excited to be offered this – that can’t be normal!), I changed jobs, John’s mum died, and he lost his job.  All in 2017.  Those events have helped us to re-evaluate life and our mantra is now to live life to the full and put nothing off.  Then comes along sodding coronavirus which has rather hampered our plans!  Scheduled holidays for this year have understandably been cancelled, and we are left feeling a little cheated having everything put on hold when we really want to be out there making the most of every minute and opportunity.  When the government relaxed the travel corridor to Madeira we seized the moment and booked a week in October. The usual excitement and anticipation of looking forward to a holiday was somewhat subdued in case we were cancelled at the last moment.  Unusually for me I became quite anxious about travelling after seeing a report of English students being stranded in Italy after testing positive for COVID.  When arriving in Madeira all tourists are tested at the airport if you don’t arrive with a negative test result.  In order to reassure me we took the decision to get tested before we went, but my result was delayed (John’s was negative).  So I was tested at the airport, and just as we arrived at the hotel I received a text message from NHS to say that my UK result was positive!  This really threw us into a tail-spin and I was in a panic thinking of all the people on the plane and at the airport that I had come into contact with (even though I was symptom-free).  We were confined to our room for two days and reassuringly kept in regular contact with Madeiran officials regarding advice and test results.  The first result was negative, followed by a second negative test so we were free to enjoy the rest of our holiday.  Which we did.  Unlike my contacts at home who had to self-isolate for 14 days, as we did when we returned to the UK.  As an update to this I have now had an antibody test which was negative, so I did NOT have COVID.  Apparently there is a 0.7% chance of receiving a false positive test result, and it was my lucky day. The experience did add a little excitement to what has been a bit of a ground hog summer.  Bring on the vaccine and let us get out and about again.  We have booked to go to the Maldives in April (150 days – not that we’re counting), and are thinking very positively that we will be clear to go.

John had a slight medical hiccup recently and has undergone various blood tests and is awaiting results.  The PSA has gone up slightly but we remain positive that things are under control, and we have excellent medical support and care.

So today, on 21^st November 2020, I look back on what has gone on in the last 4 years and what we have achieved.  Four years ago we had a choice to go one of two ways – feel incredibly sorry for ourselves and wallow in our sadness.  We chose to go a different route, and enjoy our time together.  As odd as it sounds it’s actually quite a privilege to be given that opportunity.  Here’s to many more years of excitement, travel and fun for Team Betham.

It really must be time for another blog update. Looking back, I realise that our last post was in December last year. So we have nine months of news to tell you about. Sadly, with the Coronavirus pandemic we do not have the usual holiday travels to tell you about, other than one trip we made to Madeira in January to celebrate my birthday.

We might as well start with the one holiday we did manage to take, although it does seem a long time ago now. We visited Madeira for the first time this year, staying at a stunning hotel called Estalagem in Ponta Do Sol. The hotel is perched on top of a cliff by the sea, so we had stunning views of the village below us and the Atlantic Ocean. We were really taken with the island and the amazing scenery it holds. January is one of the cooler months, but we were still able to enjoy some fabulous weather and we had several meals outside in the sunshine. I have included a few photos below.

Along with so many other people, we had our holiday plans for this year cancelled. We were due to return to Amari Havodda in the Maldives in April. The island is still closed, but we hope we will be able to go early next year. We just have to wait and see what happens with the pandemic.

It is now nearly four years since I was diagnosed with advanced prostate cancer. This is quite a milestone, as we were told at the time that my prognosis was a four to five year life expectancy. As you can imagine, that was absolutely devastating news and we were in shock for a long time. I would like to share with you some of our thoughts and feelings we had at the time. As a contrast I would then like to run through some of our experiences since that time. We have joined the ever growing and unwelcome Big C Club, and since being diagnosed several friends have started to go through the same experience. When you receive your diagnosis and are told that you can’t be cured, not surprisingly everything looks completely bleak. It was always our hope that by writing this blog, it might help others, going through similarly difficult times to try to see the future in a more positive way.

To be honest, the time around when I was diagnosed is all a bit of a blur now. I think my mind has buried some of the most traumatic memories. I just remember feeling so overwhelmingly sad. I realised I was going to miss out on so much of our family’s future. To be told that you won’t be there for your loved ones is the most difficult thing to come to terms with. It is still very painful to think about that time, but there are a couple of random thoughts I do remember from the early days after I was diagnosed, which I would like to share with you.

I have always enjoyed servicing our cars, with regular oil changes every six months. Bim’s car was due for some attention and I remember thinking while I was draining the oil in the garage that this was probably the last time I would be doing this. 

The other strange thought I remember is that I felt there was no point in buying any new shirts now that I had prostate cancer. Those of you who know me well will realise that I have never really been into buying new clothes anyway, so why this thought came to me I have no idea. 

I know Bim has several memories like this. One of hers was that she was going to miss ironing my shirts. These few memories are from our lowest point, and just show we felt that there was nothing to look forward to in life any more. As you can imagine it was difficult trying to put a brave face on when we spoke to, or met with friends.

I am pretty sure that most people going through this sort of situation themselves will have similar, unhappy, and slightly bizarre memories. 

And now for something completely different!

Apologies if that was all rather depressing, but I wanted to try and show you how low we were at that time and, in contrast, just how much there can be to look forward to.  With that in mind I would like to list a few of our high points in the last four years.

Early retirement. After going through a difficult time at work, I decided to take early retirement. We did worry about money, but it is an absolute joy not to have to go to work on a full time basis any more. I now cook every now and then at a small care home on a casual basis which suits me perfectly. I know I’ve said it before, but if you ever have the opportunity to work less, just take it! Bim has cut down to four days a week, which we love as it gives us more time to do the things we enjoy together. This week we took a ten mile walk around the local villages, discovering places we didn’t know existed. We regularly meet up with friends or go for a meal on Bim’s extra day off.

Holidays! If you have kept up with this blog, you will know it has somewhat turned into a travel diary. We never really travelled much before, largely because work would so often get in the way. Since we received my diagnosis we have changed that in a dramatic way. Forgive me if I add a few photos into this section.

So far we have had three holidays in the Maldives, which was where we went for our honeymoon thirty years ago. Our favourite island has been Amari Havodda, which we planned to go to again this year. Coronavirus changed that plan! Hopefully next year, fingers crossed.

We visited Dubai for a week to stay with good friends, Linda and Benny. The desert was spectacular, as were the huge buildings and shopping Malls. We had a great time and enjoyed some fantastic meals together.

We also visited my two brothers and their families in Hawaii on Maui for a two week trip. It was a long way to go, but it was such an amazing place. We thoroughly recommend going if you get the chance. We completed our PADI Open Water diving certificate with Maui Dreams Dive Co while we were there, which we felt was quite an achievement. Unfortunately we haven’t been able to practice our new skills yet. We hope to dive again on our next trip to the Maldives.

We had a week in Madeira earlier this year, which I have already mentioned. We enjoyed it so much that we are booked to stay at the same hotel for a week next month. So far it looks like we should be able to go. We keep a keen eye on the government guidance on foreign travel and we know how quickly things can change, so we will just have to keep our fingers crossed and hope for the best. 

As well as our overseas expeditions we have also enjoyed several breaks in the UK. We had a memorable week staying on the west coast of Scotland with close friends, Maurice and Gary. The scenery was absolutely spectacular. As was the fresh seafood, the wines and the gin!

On top of these, we have also visited the Cotswolds, Peak District, Somerset and Wales for yet more enjoyable mini breaks.

Hopefully I haven’t bored you too much, but I am just pointing out that we probably would not have taken any of these holidays if we were both working the long hours that we used to. In a very real way, we have only enjoyed all these holidays as a direct result of my cancer diagnosis.

I won’t go on for much longer. I just want to come back to the negative thoughts we both had four years ago. I am still servicing Bim’s car on a regular basis, although we replaced mine with a new one, so that now goes back to the dealer for servicing. As for my shirt situation, I can honestly say that I cannot remember having so many new clothes in my wardrobe!

That’s nearly it for now, other than another brief word about my health. While we are not able to predict how much longer I may have, my treatment is going very well. My PSA is still really low, and I am still on the first treatment plan. This is a hormone implant every three months and a cancer drug trial for Metformin.  When you are first diagnosed and start your treatment, which for me was chemotherapy, this can actually make you feel really ill. At the time I did not realise that this would wear off and I am constantly amazed at how well I now feel.

To conclude, I certainly intend to live longer than the four to five years we were initially told. We do not know how long this will be, but you can be absolutely sure we are going to enjoy every last moment!

I would like to dedicate this blog to all those who are going through the same difficult experience.

Just a few years ago our Christmas update letters would be very much work-focused; the year falling into a familiar pattern with long hours and seasonal busy periods, punctuated with odd days off to recover and catch-up with chores. It seems unimaginable to say that there has been a positive side to John’s diagnosis, but it has made us completely re-evaluate our life and priorities, and we now fully embrace the old cliché of ‘live life to the full’. Being given a 4-5 year prognosis certainly makes you realise that there is no time to lose, and definitely no time to waste being miserable or negative. John continues to feel well, and is monitored at 3-monthly oncologist check-ups. The PSA level (an indicator of prostate cancer spread) has begun to gradually creep up, but this is to be expected. 

There are other treatments that can be introduced as and when needed, and there continue to be positive outcomes with clinical trials which are yet to be introduced as standard treatments. We do get anxious just before each oncologist appointment and have found that the best way to deal with this is to treat ourselves to a holiday!

In April we had the most amazing trip to a very remote Maldivian island called Amari Havodda. The island is located almost on the equator, and is accessed by an hours internal flight (following a 12 hour flight from the UK), then a 15 minute speedboat transfer. The long haul to get there is so worth it—the island is pristine and peaceful with impeccable service, food and facilities.

We really enjoy snorkeling in the Maldives, and had toyed with the idea of learning to dive, so in the summer we signed up to do our PADI open water diving qualification. We completed quite a hefty home study theory course, and 2 days of confined water instruction in Ipswich. In October we travelled to Maui, Hawaii to complete 2 days of open water training (strangely this was more appealing that doing this part of the training in a flooded quarry in Leicestershire as suggested by the dive center). The training (especially the theory) was quite hard going, but as soon as we jumped off the boat at the Molokini Crater and saw the crystal-clear water many metres below us, it was all worth while. We dived to nearly 19 meters and loved the experience.

We were genuinely pleased with ourselves when we qualified, and now can’t wait to explore more beautiful underwater locations. Our Maui holiday was spent with John’s brother Bill, and wife Emmanuelle. We had a fantastic time and loved meeting up with Jamie and Juliette (John’s younger brother and wife), and extended family, and getting out and about to explore the island that we have heard so much about over the years. We hadn’t appreciated how diverse the landscape is—beaches, rainforests, jungles, volcanoes and old sugar cane plantations. So much to do and experience.

In May we spent a week with our good friends Maurice and Gary in a
beautiful cottage in a very remote location on the Applecross Peninsular
on the West Coast of Scotland. The area was truly stunning—vast,
unspoiled and breathtaking. We experienced some fabulous sunsets from
the cottage, looking out across the bay.

During the year we have also had short breaks to The Cotswolds, Somerset, Cardiff, Shropshire and Oxfordshire. 

Work: John is doing bits and bobs for 3 local companies. Me: I have now reduced my hours and work 4 days a week. Do you get the message that priorities have changed?

We continue to update the blog every few months: johnandbim.thebethams.com to recap on events and keep people up to date. Dip in during the year if you’d like an update.

So, in summary: it’s been a jolly good year for us. On the cards so far for 2020: Madeira in January for John’s birthday, and The Maldives in April… just because…..it’s amazing and there are fish that need to be looked at! 

Live life to the full, lovely people!!

With love and best wishes to you at Christmas, and for a happy and healthy 2020.
Bim & John

Following on from our last blog I thought it was time to post another short update.

We actually have no real health news to give you at this stage. Our next appointment  and blood test are not due until January, so for the time being we can carry on our life as normally as possible. 

I did have a minor scare a few weeks ago, which started with a new pain on my right side in my ribs. Prostate cancer spreads to the bones as the disease progresses, so I was naturally concerned that this was a sign of the current treatment failing.  The cancer is already in my left hip, but gives me no trouble at this stage. This new pain appeared just over a week before we were due to fly to Maui, so we decided it would be best to check with our GP to make sure it was still safe to travel. I received an examination from a newly qualified doctor. I was impressed with her very thorough and caring approach and pleased that she went to ask a senior GP for a second opinion. The resulting diagnosis was that I had Shingles, which while painful, was understandably  quite a relief. I was put on a short course of anti-viral medication which cleared it up in a week. So, we were all set for our holiday to Hawaii.

So, you guessed it, the rest of this post is another travel blog! 

To start with, I will explain the title. ‘Maui Bethams’, refers to both my brothers, Bill and Jamie who have lived on Maui with their families for many years. This was our first visit and was actually long overdue. Before my diagnosis, we had always found it difficult with our full time jobs to find enough holiday time to get away. We have certainly put that right since I have taken early retirement. We were delighted to stay with Bill and Emmanuelle in their beautiful home near Paia, which is where they have their Maui restaurant, Cafe Des Amis.

The first thing to say is that Maui is a long way away!  Over 7,300 miles. We flew with West Jet via Vancouver, which was cheap, but very basic. It did take us a few days to recover from the flights, especially on the way home.

We had a fantastic time in Maui and visited some amazing places. Apart from the scuba diving which I will tell you about later, one of the most impressive sights was driving to the top of Haleakala volcano. The view from the top was completely breathtaking, although at over 10,000 feet  that may have been down to the thinning air! It was incredible being above the clouds. We could see the Big Island 100 miles away clearly. As a comparison, the highest mountain in the UK is Ben Nevis which is less than half the height at 4,400 feet.

We hired an open top Jeep for a drive around the island, which starts with the road to Hana. This was a truly scenic drive which takes you through a wide range of environments, including a stunning coast road, waterfalls, even jungle where it seems to rain all the time. We stopped at Aunty Sandy’s Banana Bread shack, which is world famous for a reason. Delicious. After Hana, the road starts to deteriorate and in some parts was no more than just a dirt track. It was great fun in the Jeep, which handled all the different terrain with no problem.

It was so good to catch up with family and to meet my new sister in law for the first time. Jamie married Juliette earlier this year. Welcome to the family, Juliette. I have included a few photos below from some happy family gatherings. 

We mentioned in our last blog that we had started our open water scuba diving training, and we were very excited to have booked the final part of the course at the Maui Dreams Dive Shop. We had two days completing our training. The first included two shore dives from Ulua beach which were fun. We had to demonstrate that we could complete various safety tasks, such as removing and replacing your mask underwater. 

The second day was diving from a boat at Molokini Crater and Stone Wall. The moment we stepped off the dive platform with a ‘giant stride’ we were in a different world. The water was crystal clear, and it made all the training up to that point worth it. We dived to 19 metres and spent about an hour exploring the floor of the ancient volcano. This part was over all too quickly and we can’t wait to book some more dives next year. We were very lucky to have such an enthusiastic dive instructor, Kelly Coppock. She was really patient with us and obviously loves the job she does.

After we had finished our training dives and were back in the shop completing our paperwork, I tried to explain to Kelly something of the ‘journey’ we have been on. Three years ago, when we received my diagnosis, we both believed that my life was pretty much over. They were very bleak times and we struggled to see how there could ever be good times again. The contrast between then and how we feel now couldn’t be greater. I know we both feel that we have achieved something special, learning to dive, and we are now looking forward to practicing our new hobby. It probably means we will have to book more holidays! I wonder where we should go next?

If anyone reading this has the chance to visit Maui in the future, we thoroughly recommend paying Maui Dreams a call and booking some diving with them. It will be an ‘awesome experience’.

Here we are again, with another Betham blog update. As you know, we started this publication with the intention of letting you know about my health and ongoing treatment for Prostate cancer. However, I do realise that this is now turning in to more of holiday travel blog. There is actually a good reason for this, which is that my health has remained pretty stable for quite some time now, so if all we talked about was my treatment, they would be very short updates.

We had our oncology appointment with the consultant this morning, which is the first time we have seen her in six months. The last time we met, she said that I will probably go onto an additional hormone treatment soon, depending on what level the PSA reaches and how quickly it is rising. Well, we discussed the results from the blood test today and, while the PSA has drifted up slightly to 4.02, all other results including for bone, liver and kidney function are completely normal. This was excellent news and so I will remain on the current treatment plan for the time being.  We are both very pleased with this as I am likely to be more fatigued when the next drug, Enzalutamide is introduced.

It was interesting to talk to the consultant about what to expect when we move on to the next stage of treatment. The introduction of a new hormone medication will hopefully bring the PSA down, and extend the time that I am feeling well, however it may just halt the growth of the cancer. Unfortunately there is also the possibility that it may not be effective at all, in which case I would need to try something a bit more powerful, but this would have stronger side effects which I would like to avoid for as long as possible. She did explain that all these treatments only have a limited time that they remain effective, so it’s best not to use them until absolutely necessary.

We both feel relieved about today’s results, as it gives us reassurance that we can continue enjoying our lives and making the most of every opportunity that presents itself to us, while I am still feeling well. You have probably guessed from the photo at the top of the page, that our latest project is learning to Scuba dive. We have signed up with Diveline in Ipswich to take our PADI Open Water Diver certificate. So far we have had a trial dive in the training pool which was great fun and we have now just about completed our theory, which consists of a 250 page training manual including several tests. This will be followed by four confined training dives in Ipswich. The final stage to gain our certificates is to complete four more dives, this time in open water. The instructors offered us the opportunity to make these dives in a flooded quarry pit in Leicestershire. Alternatively we can finish the open water training in Hawaii, when we visit in October. Mmm, difficult choice! We will let you know how it goes.

And now the bit where I let you know what we have been up to since our last update. You may be surprised, that we have not been away on holiday, but we have had a few trips and outings which we have enjoyed. I won’t bore you with all the details, but a few of the highlights have been going to see Ed Sheeran in Ipswich Chantry Park. This was at the end of his record breaking world tour, and you could tell he was genuinely happy to be home. This was a great evening.

We also had a great family trip to see Ellie and Connor in Somerset over the August bank holiday weekend. Jeannette, Keith and Dan joined us and we had a lovely time on the farm where they are living. It was our 29^th wedding anniversary and Bim’s mum and dad’s 57^th. We took the opportunity to recreate a few wedding photos.

I think that’s all we have for the moment. We will let you have another bulletin when we have more news. Thanks for reading.