In November 2016, we started this blog after John was diagnosed with advanced Metastatic Prostate Cancer. It was initially meant to keep our friends and family up to date with John's latest health news. However with his continued good health, it has now turned into more of a travel blog since he took early retirement in 2017. We will continue to update it regularly with our latest travels and any other news. We hope you find it an interesting read. Thank you for all of your support and good wishes.
Just a very short update this time. Starting with health news. I had my most recent blood test last week and received the results within two hours which is just amazing. It seems that not all hospitals offer the Patient Portal that shows all my medical results and documents. We have found this to be such a useful feature and saves all the stressful times waiting for telephone calls or face to face appointments.
This time my PSA has risen a little faster than the last test 3 months ago, but is still relatively low at 7.50. I did have a bit of a down day as a result of this news, as I am aware that my future treatment options are becoming limited. The oncology nurse confirmed that I will be ‘re-challenged’ with chemotherapy as my next treatment. When I occasionally slip into a negative frame of mind, I do feel the clock ticking down. However, nothing that a good glass of red can’t resolve. It can take a little time to recover and remind ourselves that we need to make the most of the time we have while I still feel well. The best therapy is of course to book a holiday, so we have booked a week in Madeira to celebrate my birthday in January. Can’t wait.
Aurora Borealis
We had the most fantastic trip to Iceland in January for our friend, Nicky’s, 60th birthday. One of the things we really hoped to see was the Northern Lights but we were unfortunate and came home without a glimpse. But as the title suggests, you don’t need to travel to see the show. The sun is in a particularly active period at the moment and on Thursday night last week after a powerful solar storm, the night skies above our home in Thurston lit up with the most amazing display of colours. We started watching at about 8pm, then, when we went to bed, I left our GoPro out to capture a timelapse overnight. We were so excited to see the results in the morning, which were better than we could have hoped. Not only was it a fantastic display, but there were also a few meteors captured as well.
I have included the video below, set to a little 1976 Jean-Michel Jarre music.
That’s all for now. Thank you for reading, and I hope you managed to see the Northern Lights for yourself.
I think it’s fair to say that Bim has made the most of her 60th birthday year. We have just enjoyed the last two birthday events (given as vouchers) which were lunch at the Savoy, followed by drinks at the Royal Opera House with Ruth & Russell. Then an amazing visit to Kew gardens last week. What a fantastic place. We thoroughly recommend going if you have not been before. We even saw our first Banksy. With all the events we had booked, Bim managed to extend her 60th birthday year to 17 months!
Health News
Actually there is very little to update you about my health this time. I had my regular three monthly blood test and nurses appointment in July which all went well. The PSA was up, but only by a small amount again. And as I feel well, we carry on living our best lives which naturally includes more holidays; more on this later.
I did have a further telephone follow up call with the urology consultant to check how I was doing after my TURP operation. He told me that the part of the tumour he removed was very hard and he was concerned that I may have been left with urinary incontinence, which is one of the potential side effects of the operation. I was pleased to be able to tell him that he did an excellent job and that I have no unwanted side effects. I may need the same operation again at some point, when the tumour starts to grow again, but for now it’s a relief to be able to pee normally again. Long may it continue!
That really is all my health news for the moment, so now I can fill you in on what we’ve been up to since our last blog in April.
The main event was another perfect holiday to the Maldives. It does feel like home to us when we return. We first visited for our honeymoon 34 years ago, when we stayed on Kurumba (which means coconut in the Maldivian language). I believe this was the only tourist island at the time. Things have certainly come on a long way since then. There are now so many different islands to visit it is hard to make your choice, but this time we stayed on Diamonds Athuruga, which is an Italian managed resort.
This island was everything we hoped it would be – fantastic food, brilliant snorkeling, and amazing service. I have, of course, added a few photos of our trip below.
If you have time to look, I have put our holiday video on YouTube.
One of the unfortunate side effects of the hormone treatment I have had for the last (nearly) eight years is that it is very easy to put on weight around the stomach. I actually weigh the same as I did ten years ago but my shape has changed noticeably. I do try to maintain a healthy weight, as it is an important part of avoiding other health issues, but it does seem to become more difficult as time goes by.
I continue to work part time in an IT role as a Systems Support Officer for Mid Suffolk District Council, which I am really enjoying, although my contract is due to end in two months time. I am hoping it might be made permanent at that point, but I will have to wait and see what is decided.
We have just booked a late break to La Gomera for a week. We have never been before, but the weather looks good for this time of year. We are hoping this will be a combination of a few excellent walks and time by the pool. Just what the doctor ordered!
We do not feel we have done with the Maldives completely yet and are looking at booking for sometime in May next year, but as always we will have a lot of hurdles to jump, (blood tests, oncology appointment, travel insurance etc) before we can book. Fingers crossed.
I decided not to wait as long between blogs this time as we have a bit of an update to give, having had my most recent blood test and oncology appointment.
We have had a few unsettling times since my TURP operation that I told you about in the last blog. Four weeks after my operation we decided to have a day out in Cambridge for a little pre–holiday shopping. We were in John Lewis (where else), when I received a call from the hospital to make an appointment the following Tuesday for the urology consultant to discuss the results from my operation biopsy. I already had a follow up appointment booked for July, so this short notice appointment sounded ominous to say the least. We were left wondering what had been found that could not wait until the July appointment. I then received a letter from my oncology consultant to say that my original prostate cancer had been re-graded from a Gleason Score of 7 to 9, but that this was normal over time and would not change my current treatment regime. So what had the Urology Consultant found that needed to be dealt with so quickly? We spent a difficult weekend, thinking about what the worst news might be, in order to prepare ourselves for it.
We both went to the appointment. Sitting in outpatients brought back dark memories from when I was originally diagnosed. When we finally went into the consultation room, we were both very much on edge, especially when we saw the consultant, a doctor and a nurse waiting for us. Once we were seated the consultant asked if I had received the letter from Dr Woodward about the Gleason score. I answered ‘yes’ and he then said, ‘So, we just want to see how you are doing after your operation’. And that was it! Having thought the worst beforehand, we positively bounced out of the room. The appointment only took five minutes and we were so relieved at the end of it. We have spent the last seven years trying to remain as positive as possible, but it shows how fragile this can be when faced with potentially more difficult news.
I had my routine blood test last week followed by an appointment with the oncology nurse. The PSA was very good, only having risen marginally to 5.36 over the last three months. This was good news, especially as it had risen slower than the previous test. I did ask what my next treatment is likely to be and at what point it would be introduced. This will most likely be another round of Docetaxel chemotherapy, which is what I had after I was first diagnosed. It will be introduced when the PSA has risen to about 17, so hopefully quite some time to go yet, although there is no way to predict the timescale.
I have mixed feelings about the idea of having chemo again. It was effective, which is a good thing, but it is also pretty debilitating. I do remember being very fatigued for the five months or so when I had it before, but then I was trying to carry on with a full time job at the time.
One positive point was the consultant has agreed that she is happy for me to travel next Tuesday. We are off to the Maldives again. We really seem to be addicted. This time we are visiting Diamonds Athuruga. We plan to enjoy a relaxing time in the sun, with plenty of good food, fantastic snorkelling and an occasional cocktail or two. We can’t wait.
There are always a series of obstacles to navigate before we go away, this time it has included the recovery from the operation, routine blood test, consent from the oncology consultant, discussion with the travel insurance company and now we have to hope that Iran and Israel don’t decide to escalate things even further. Two days and counting!
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.
This is just a very short update and, I’m sure you will be amazed, one that does not contain any holiday news.
I had my first blood test since being prescribed the new hormone treatment – Enzalutamide. My appointment was at 8:00 am on Friday morning and by 10:00 am all the results were already on my Patient Portal app to view, apart from the PSA. We had a very tense day waiting, but at 3:00pm the results were in. We were staggered that the PSA had dropped from 17 to 7 in just 4 weeks. This is an amazing result. The last time it was this low was 2 years ago. I really didn’t know what to do with myself, I was still at work doing my data cleansing role, and suspect I made so many many mistakes after seeing the results that it will take me another week to correct them all!
It will take us a day or two to calm down before we have an oncology review next week. Hopefully that meeting will just be a formality to agree that I should carry on with the Enzalutamide and who knows what will happen to the PSA at the next appointment. Will it continue to drop? I hope so. We had expected that I would have fatigue as a side effect, but at this stage I feel great. I am sleeping better at night and so I have more energy during the day, rather than less.
Talking of side effects, one that I am suffering from is Osteoporosis as a result of having hormone treatment for over six years. So, following a bone density scan I am now taking bone strengthening medication as well as the cancer drugs. Bim has commented that my hair is getting thicker and growing more wild recently. Could that be a side effect of all the combined medication I’m taking? Possibly.
As a special treat for reading this far I am putting the PSA graph on here for you to look at.
Oh, by the way I lied about holiday news. As long as my health holds up we are going to visit the Maldives again in March, for Bim’s 60th birthday. The island this time is Vilamendhoo. We are so excited. We hope to be able to swim with whale sharks and manta rays. Who knows, we may even bump into some good friends over there.
As the title suggests, after 40 years working in catering in various roles from trainee chef to catering manager and more recently as relief chef in several care homes around Suffolk, the time has now come for me to finally hang up my kitchen whites for the last time. It’s been a fulfilling and rewarding career for me, but I now find the shifts too long and demanding.
As a result it is now time to find something else to keep me busy. I don’t think I mentioned in my last blog that I signed up with our local school to work as an Exam Invigilator. I helped with the GCSE exams during May and June which was great fun. I will stay on with them and cover any future exams as required. I have also just been appointed as an Admin Support Officer working with Mid Suffolk Council on a temporary contract until March next year. I’m actually really excited about taking on a new role. We had a week in the Bordeaux region of France last week, which is where I had my interview over Teams. That was a new experience for me, being interviewed while sitting on our hotel terrace overlooking the river Lot. It was quite surreal. I am due to start next week if we can get all the paperwork in place in time.
Interview
The lesson from this is that it’s never too late for a career change. I’ll let you know how it goes in the next blog, unless of course I get sacked in my first week, in which case I may not mention it again!
We have plenty of other news to tell you about. There is so much going on in the country at the moment, with a new Prime Minister and a new King all within a week.
Before I give you a health update, I will tell you about our trip to London to see our late Queen’s procession from Buckingham Palace to Westminster Hall. On Tuesday, Bim suggested we should go and be part of the history that is being made this week, so we bought train tickets and arrived in London at about 11am on Wednesday. We had no expectations of being close enough to see any of the formal proceedings but hoped to go to Green Park to see the floral tributes. We are not ‘City Folk’ and do not really know our way around but incredibly we found ourselves right at the gates of Buckingham Palace. We were the last people allowed into the official viewing area and had an amazing view of the gates and the top of the Mall. We only had to wait for an hour before it all started, and during this time we saw all the guards and marching bands arrive. The crowd went completely silent just before the procession started (apart from one annoying woman who kept talking on speaker phone, until Bim told her to turn it off). It was an incredibly moving moment watching the coffin being transported on the gun carriage with all the family walking behind. We feel very lucky to have witnessed it.
The sea of flowers in Green Park was also amazing to see. It is worth the trip to London just to see them.
I have added a few photos from our day, and the link for a short video of what we saw and heard.
Health Update
Before I give you our latest health news I just wanted to mention Bill Turnbull who died at the end of August from Prostate Cancer. He was diagnosed a year after I was, and I remember being jealous at the time because he said that his doctors had told him he may have up to ten years to live, where I was given a four to five year life expectancy. This shows the uncertainty of what to expect after diagnosis. Sadly his disease progressed quicker than was expected. I enjoyed watching Bill when he was on Breakfast TV and more recently as a presenter on Classic FM. He will be missed by many.
Right, time to give you our health update. If you have been paying attention, regular readers will know all about my PSA levels. At my last blood test this has finally gone into double figures, reaching 11.4 this week. As a result my Consultant has said I will start my next treatment regime (which is still only the second one). I will be given Enzalutamide which is an extra hormone tablet to take daily. Hopefully this will slow down or even reverse the cancer spread for a while. I am likely to have fatigue as the main side effect from this treatment, but hopefully that should be manageable. We will just have to see how it goes. We will keep you informed.
As usual our normal reaction to this sort of news is that we ought to book another holiday! It’s Bim’s 60th next March, so we are hoping to book somewhere special for a week or two. We hope to return to the Maldives again, if my health allows.
I think it is time for Bim to write the next issue of this blog. We see the Consultant next week so perhaps she can give you a further update then.
Just one more thing. It was the most bizarre event, that while standing in a queue of possibly a thousand people to get into Green Park I saw someone I thought I recognised from my school days. I did have a chat with him. We hadn’t met in more than forty years. I remember having all sorts of adventures with him, nearly all of which are best not repeated here! Great to see you again Mark.
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.
We are posting this blog exactly five years after receiving my diagnosis of advanced prostate cancer in November 2016. If you have read any of our previous blogs, you will know how devastating that time was for us. Some of my memories are a little blurred from then, but I distinctly remember being told that as the cancer was advanced there was nothing the doctors could do. We were asked if we wanted to know what my life expectancy was. Before we were able to reply we were told that I had four to five years to live.
I don’t suppose there is any way that news like that can be given in a way that isn’t going to completely floor you, but I came away from that appointment essentially believing that there was no hope, and that our life together was pretty much over.
How wrong I was!
Although we had a rough time coming to terms with the fact that I had terminal cancer, and I went through five months of chemotherapy treatment, (which anyone who has had the same will tell you is really not that much fun), since that time we have been enjoying ourselves and living life to the full at every possible opportunity. Regular readers will know that this blog has actually become more about our recent rediscovery of holiday travel. I’m not going to bore you by going over all the places we have been. You can read previous posts if you would like to see where we have been.
After the difficult period adjusting to the life limiting prognosis, we made a decision to approach life in a positive way and set targets for things we would like to achieve. A good number of these have been short term targets, such as buying seeds for the following year’s vegetable harvest, but I remember quite early on saying that I really wanted to get to my 60th birthday. As this was just over the five years we were told I had, it seemed unlikely that we would get there. My birthday is in January, so we are approaching that milestone. I am still on the first treatment plan, which is hormone therapy combined with a drug trial of Metformin and my PSA is still relatively low at 8.07. I had a CT scan in August, which showed that the tumour in the prostate is about the same size as it was in 2016 and there was no longer any visible sign of the cancer in the lymph nodes. I am likely to start a new treatment next year, but all in all we are both very pleased with how things have been going. To celebrate the possibility of reaching 60, we have booked a break in Amari Havodda in the beautiful Maldives. We will certainly bore you with lots of photos in a special birthday blog! There is always a possibility that something will happen to stop us going away at the last minute, but the enjoyment of planning special events like this is all part of our trying to keep a positive approach to life.
Travel News
As has now become a regular part of our blogs, this is where I tell you about any recent trips and special events since the last update.
We were lucky enough to book a last-minute break to Madeira in September, once again returning to Estalagem, Ponta Do Sol. A beautiful cliff top hotel with stunning views and exceptional vodka martinis.
We had a couple of nights away on the Norfolk coast in the summer and a night at the Northgate hotel to celebrate our anniversary in August. We have also discovered our new favourite local restaurant, The Forage Kitchen at Rougham. We ate there a few weeks ago and decided it was the best meal out we have ever had. I thoroughly recommend a visit if you get the chance.
Other News
After four years at West Suffolk, Bim has now changed jobs and is back working for Mid Suffolk, where she started her Environmental Health career in 1995. She has taken a short-term contract until April next year. This has been an excellent move for her and I am delighted to see that she is now really enjoying her work once again. We don’t yet know where she will go after this contract as yet, but I’m sure something suitable will come along at the time.
The Future
Having now outlived my original prognosis we have a few things to do.
The first is to have a good bottle of wine / Champagne to mark the occasion. The second is to start setting a few more goals for the future. Our consultant told us at our last meeting that my life expectancy is still measured in years, not months, so hopefully we have plenty of time to live life to the full. We feel we have achieved a lot in the last five years, lets see what we can do in the next five. Who knows?
For any nerdy types, I have attached a graph of my PSA levels from the last five years. I know there are some who are going through their own Prostate Cancer treatment that may find it interesting.
Thank you for reading once again. We hope to post a Christmas edition next month.
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.
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!
Amari Havodda
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.
Molokini Crater
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.
Haleakala Volcano. 10,000 ft
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.
Brothers, Jamie, John, Bill
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.
On top of the world.
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.
Waiting for Ed
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 29th
wedding anniversary and Bim’s mum and dad’s 57th. We took the
opportunity to recreate a few wedding photos.
29 years ago.
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.
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!
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 September 2016, I made a rare appointment to see a GP after having a couple of dizzy spells in the summer, and was generally feeling a bit tired. As my sister and brother both have diabetes it seemed sensible to mention this to the GP. A blood test was carried out which revealed a high PSA level. After several somewhat intimate examinations I was sent for a prostate biopsy, which came back as positive for prostate cancer. After further tests including an MRI, CT and bone scans, I have now been diagnosed with metastatic prostate cancer and have started treatment in an attempt to manage the disease. John