So, …it’s over two years since my Mesothelioma diagnosis and the journey has been full of highs and lows; and a great deal of learning. In truth, I’m still learning about the disease and the following text and blogs are my attempts to make sense of it all, in the small hope it helps others too.
Don’t expect Pulitzer prize writing, just my simple, personal take on it all… and how it has, or continues to affect our day to day lives. So if you’ve managed to read this far, well done and please read on.
October 2016 – Following a bout of pleurisy I was once again in the Doctors surgery, (my second episode in 12 months), only this time it wasn’t to be another simple course of antibiotics by way of treatment. This time it was more serious and needed a more detailed medical investigation.
November 2016 – Following a series of medical tests (bloods, x-rays and CT scans etc.) they revealed that I had a large amount of fluid on the left side of my chest. This fluid was restricting my breathing and the underlying cause needed to be determined. (Even at this early stage, medical questioning was leaning towards any past exposure to asbestos in my working life, which I knew there had been).
Apparently, the most effect way to remove the fluid and take the biopsies was by undertaking a VATs Procedure (example video here) WARNING Graphic content.
December 2016 – An operation called a pleurodesis was planned for early December, which would drain the build up of fluid; allow the taking of biopsies to test for cancer; and insert a talc like substance that would stop the fluid building up again by sticking the plural lining to the lung. The talc part of this procedure couldn’t be done, due to the excessive amounts of fluid that kept building up during the procedure. This continued fluid build up and required an overnight stay due to the chest drain, but I was discharged the following day and sent home to await the results. These would be due in 7-10 days, but a phone call to the surgeon’s secretary on the 19th December was the beginning of this crazy ride…
December 19th 2016 – A day which will never be forgotten, my own personal D-Day, the day of my results. What an awful and soul-destroying day that was. The greeting from the surgeon on arrival was one that I wouldn’t wish on anyone and went something like this…
Come on in Mr & Mrs Chapman, well your results are in and it not good news I’m afraid. The biopsies have confirmed you have Pleural Mesothelioma, in shock and knowing that this was a terminal cancer, we asked the most obvious question, how long have I got? …’weeks’ or ‘months’ was his reply,… would you like a family room to compose yourself and take in the news…! No thanks, we just want to leave…
In a very casual and clinical way we were advised that the Oncologist would be in touch in the next 24/48hrs to discuss treatment options and we said our goodbyes.
The week before Christmas 2016 – What a week, so emotional for so many reasons, I don’t think I’ve cried so much since I was a kid. Having to tell family, friends and colleagues of my diagnosis and prognosis was one of the hardest things I’ve ever had to do. Following my meeting with the Oncologist just before Christmas, my expected survival time was revised to 12month, this came with a caveat that it could be anywhere from 0 to 60 months. Talk about covering your bases! Anyway, we agreed a treatment plan (4 cycles of Chemo) that would start at the beginning of January 2017.
Christmas 2016 – For all the reasons I’m sure you can imagine, this was one Christmas I was in no mood to celebrate. A terminal cancer prognosis has a tendency to dampen all festive spirits. All I could think of what do I need to do/arrange/cancel/ change to make sure my family are taken care of when I’m gone. But despite all of that, we managed to have a quiet but good Christmas and went into the New Year hoping the chemo was going to be kind and help reduce my cancer.
Jan 2017, Medical Retirement – I have to say, that as bad as my news was about my diagnosis, it could have been so much worse if I had not had the fantastic support of my employer, colleagues and line manager. They enabled me to take early retirement and processed it in a few short weeks, something I’ll be forever grateful for as it allowed me to focus on my family and other priorities. My heart aches for those less fortunate who don’t have this option through their employment. I can’t imagine how it must be for those who have to juggle their cancer and treatments, whilst trying to continue to work, or worse, end up with no job or income because they can’t work.
Chemo treatment Jan/Feb 2017 – The first Chemo cycle was due to start soon after the New Year at my local hospital and would involve the intravenous injection of two chemo’s per session. First one type (Pemetrexed), then a flush, then the second chemo (Cisplatin) and another flush; the sessions typically took around 2 hrs to complete. This process was completed once per three week cycle. My overriding impression of that first cycle, apart from how it didn’t seem too bad, was just how many other people were facing their own cancer challenge and were full of the same fears, hopes and challenges as me.
These people were of all ages, gender, backgrounds, ethnicities and religions, all hoping that the treatment was going to work for them. I’ll never forget that worried look I saw on a young Mum in her early 20’s. She was being treated for breast cancer. This was her first cycle and was fighting back the tears, trying to be strong as she talked on the phone to family, whilst being hooked up for her first dose of chemo. I hope she responded well.
Following my cycle 2 and a very wet weekend in a very wet Edinburgh, I ended up with pneumonia and had to spend 4 days in hospital on IV antibiotics, not an experience I want to repeat.
Soon afterwards I was due to start my 3rd cycle, but fully expected it to be cancelled due to my weakened state after pneumonia, but no, it went ahead and once again my health took a turn for the worse following the chemo which left me feeling very shitty, weak and determined that there wasn’t going to be a cycle 4. Sod that, I thought, its worse than the cancer.
Chemotherapy is such a divisive thing for people. Some see it as a means to an end, something that will destroy or reduce their cancer(s), whilst others who have used it or seen family and friends health suffer from its use, feel its just poison, killing everything it touches. Me, I’m more of the latter view, based on my experience. But when there is nothing else, you’ll try anything to extend your life… won’t you!
April 2017 House Move – The aftermath of my initial chemo treatment and the realisation that my health was most likely going to get worse, forced us into admitting that it was only a matter of time before I couldn’t get about in our 3 bed semi with full loft conversion. I was already puffing like Thomas the Tank Engine after just one flight of stairs; and we slept in the loft. As if by magic, or Devine intervention, a bungalow came up for sale behind our house, and the long story short was we viewed it in the February and bought it; updated it in March; and moved into it in April. Talk about fast. It took a while longer to downsize and sell our old house, but we had now made better provision for the long term effects of my cancer and my support / care needs.
Mar/July 2017 – This time was a time of much-needed R&R, time to try to get over the effects of the chemo session, spend time with the family and just chill. A long weekend in Malaga, Northern Ireland and week in Port Soller (Majorca) was just the ticket and helped make some more wonderful new memories with my wife and family.
One of my key consideration during this time, which constantly played on my mind was, ‘what now’, how do I slow, stop or reverse this awful disease? I want to be here as long as possible to watch my family grow up. My oncologist had given me an estimated 12 month life expectancy last December, and I was already half-way through that! The only real option was to get on a drug trials, and become a guinea pig for medical research in the hope that the outcome was a reduced or even cured cancer.
September 2017, The Unexpected Wedding – There are a number of milestones in every parent’s life that you take for granted when things are all fine and dandy. For example, seeing your childrens first steps, first day at school, first party, going to college or university and eventually see them getting married. Having grown up children at the time of my diagnosis meant that we were lucky to see both of our children achieve most of these milestones, except for marriage and that prospect had never been on the cards for either of them, or so I thought.
Our son had surprised us all earlier in the year by proposing to his fiancée and even more surprising was that they would get married in the September. It was one of the nicest surprises we have ever had, and considering how little time there was to prepare for the wedding, it ended up being a wonderful day, filled with great memories for everyone. I hope against hope, that I’m as lucky again and get to walk my beautiful daughter down the isle. What better reason can a man have to fight on for life.
July 2017/ Feb 2018 Trial Time – Following a referral by my Oncologist to the Sir Bobby Robson Cancer Clinic at the Freemans Hospital in Newcastle, I was invited to discuss a trial and undergo various tests to see if I was a suitable candidate. The trial would involve a dual approach of traditional chemo; this time Gemcitabine; in combination with a new immunotherapy drug called SRA737, the downside was that it wasn’t specific to my cancer type and was being tested on multiple cancer types to see which ones responded the best. Perhaps not ideal, but it was hope, and I was going to give it a try. The basic premise for participants was, if you meet the trial criteria you get the drug under regular supervision of the clinic staff and your response to it; and its effects on you; are closely monitored. If you get too ill from its side effects or it doesn’t appear to work any more (or not at all), you’re taken off the trial. Throughout my time on the trial, they had to constantly adjust down my chemo dose during each cycle, to compensate for the impact on my blood cells. Each cycle consisted of a dose of chemo followed by two days of the trial drug, this was repeated for three weeks, then a week of rest and recovery before starting the next cycle. Thankfully the side effects of the chemo and trial drug were not as bad as those I’d had previously experienced and were much less debilitating.
During my 6 months on the trial I was told I had the longest consecutive doses of all the people in their clinic, but after my most recent CT scan, I fell foul of the 20% rule, what’s that I hear you say? Well basically, if your cancer grows more than 19% for the duration of your treatment you get taken off, no matter how much better it may have made you. A reasonable criteria you may think, but 20% growth of 3 mm tumour (the typical thickness of your plural lining) is always going to be harder to manage and quantify than if its 20% of 5 cm round tumour. But them’s the rules and you have to abide by them, so I was off the trials and back to the waiting list.
October 2017, New Family Member – Something I wasn’t expecting to have during all this, was a new family member. No, not a grandchild, but a dog, not just any dog, it was a rescue dog. We hadn’t had a pet dog for over 15 years and now, I was somehow talked into taking one on, I must be mad I thought at one point. But as it turned out, it was one of the best decisions we have ever made and I’m so glad my wife talked me into it. My wife had already picked a dog and after various checks on us, our home etc we became the proud owners of a 10-month old Siberian Husky and we would be his third owners in that short time. Cody as we renamed him has become my guardian angel, a new reason to get up and take walks and just enjoy life. I’m sure I’ll talk about him much more in my blogs to come.
October 2017/October 2018 – This period of time was strange for many reasons, not least of which was the extremes of weather we had (Beast from the East and the hot summer of 2018), which allowed us time for lots of short walks with the dog. It was great to just get out and enjoy ordinary things for a while. One thing that having a terminal cancer gives you, is a new perspective on life. Gone are the times of wishing it was the end of the day or week, or complaining about the everyday things. I now have a simple perspective on life, if I’m waking up and still drawing breath, it’s a good day. However, it was also a time of no formal cancer treatments and only occasional appointments with my Oncologist or his team to see how I was doing. These meetings always felt like a waste of time as they were simply telling me things I already knew without the use of X-rays and CT Scans, that was, my cancer is progressing, getting worse, robbing me of my life… Where do I go next?
Alternative Therapies – At an early stage of my diagnosis, I was already looking to see if there was anything else I could do to help with the symptoms and effects of my cancer and its treatment. I had heard a lot through social media and the internet about the alleged effects and benefits fellow cancer sufferers had gained from using cannabis based products, in particular, the oils.
Now there is a lot of miss-information out there about cannabis and these oils, with lots of people are unable or unwilling to note there are differences between Recreational and Medicinal cannabis based products and the focus is always about recreational use and risks. I’m not going to preach to people one way or the other, but what I would say is make your own mind up after reading the following link CBD/THC. My belief is it does help in many ways, especially for pain management and sleep.
December 2018 – Pain is becoming a PITA. A specific feature of Meso cancer is the pain that is part of the disease symptoms. The severity of which seems to differ person to person, but before Xmas 2018 it was getting out of hand for me. No amount of over the counter pain meds or prescription opioids was touching it, driving me up the wall and really affecting my ability to sleep at night. The remedy turned out to be steroids, Dexamethasone to be precise, 8mg per day soon kicked the pain into touch, but my god how I hated the affects on my emotions. Talk about highs and lows, not to mention the inability to sleep, its crazy how quickly these things impact on your mental and physical well-being. Thankfully the dose was reduced pretty quickly over a couple of weeks and now down to 2mg per day and things are much more manageable. A big surprise to me was all steroids are not created equal, what I mean is they are like beers of different strengths. Would you believe that 2mg of Dexamethasone is the same as 13mg of Prednisolone? Something for fellow suffers to note when you’re looking a trial prerequisite about current meds and their effect on the trial drug(s).