The following blog has been written by me, Ian Hensely, and refers to how I have adjusted to living with terminal cancer. It is intended to help those who have cancer or indeed those who wish to see how an ordinary man in the street copes with such an illness.

When it all began

In August 2021, I underwent a simple blood test to see how my bowel was reacting after recent surgery.  After being that all tests were fine I carried on as normal, only to be called by the surgery again after four days to be told that the last test was back and that there was a strong possibility that I had cancer.  I would be referred to the two-week programme. Nothing of any importance registered with me at that moment as no one had said for certain that cancer was present. What made me sit up and take notice was a call from Northampton General Hospital the same day as the Doctor called saying an appointment with a Dr Jane Parker had been arranged for two weeks time. In the meantime, I would need to have various tests on my heart, breathing, CT scan on my back etc. When I met Dr Parker, she told me she was 95% certain that I had Multiple Myeloma, a cancer that affects the blood and bones for which there is no cure, so it is terminal.

You have terminal cancer.

The first thing that went through my mind was how are my wife Gill and I going to cope.   The second worry was that my Mum had died of Multiple Myeloma. My recollection of her throughout her two years played on my mind for a considerable time. I admit that her cancer was over 20 years ago, but she still died within two years of being diagnosed, and the pain she endured towards the end was horrific.  I wouldn’t wish that on one’s worst enemy.

We then went through with the consultant and talked out

  • What to expect from the various treatments
  • The help that was available to both of us.
  • The fact we would never be on our own.

My wife shed some tears at this point when he talked about never being on our own, but I did my best to keep as positive as I could. When we left the hospital, it was time for a cuddle! Before we reached home that day Gill had already decided what would happen “Our lives have been turned upside down and we will live them as we want, and should others not accept this then it is just too bad”, and we have held onto this ever since.

It took us some time to accept what was going on even when the treatment had started, and the thought at that stage that I had terminal cancer never crossed our minds.  We all thought we are going to be okay and come out the other side unscathed.

The first chemotherapy lasted some four months and that turned out to be a pretty torrid experience, particularly when it was combined with steroids and other drugs, plus the fact that I had to inject myself each day with a blood-thinning substance! Steroids were the worst, they played with you physically and mentally bringing on bouts of constant talking or horrendous dreams! Unbeknown to me the steroids set back one’s ability to carry out the simplest of tasks and there were times when you did wonder where you were and what was going to happen next. After six months of receiving chemotherapy, I was told that I had gone into remission and that all was well and all blood results were where they should be.

Roll on nine months from the above news and I am told that I have started to relapse and different treatment was required. It had been planned that I would have a stem cell transplant before the age of 70, but given the relapse, this would be brought forward to March 2023.

Feelings since diagnosis in 2021.

When you are given the diagnosis, everything seems to be in a constant whirl and for some time after I had not taken on board the fact that my cancer was terminal. I had gone along doing everything the hospital told me to and living what seemed to be a normal life. However, after the relapse, the severity of the situation did begin to hit me, and I spent many hours planning what I would do when the inevitable happened. Things go in and out of your mind so quickly that you sometimes wonder why you bother. It is at this stage that you begin to realise that you are not the only one suffering a “death sentence”, because your wife, children and closest family also have this sentence hanging over them. It is easy to forget that others exist as you are so wrapped up in yourself. Others need looking after as well, some may want to discuss it with you some may not, but I have found, that those that don’t help is only a phone call away.

The stem cell transplant

A stem cell transplant entails you receiving previous stem cells, which in my case were harvested some 12 months before, being replaced in the body after you have received a “sledgehammer” full of chemo. Your body should then be clear of any cancer cells, but your immune system has been reduced to nothing.

I had been told a lot about the transplant and how it affects you, what the side effects are etc, and if you took this seriously then I don’t think you would go for it. I did go to Leicester Royal Infirmary in March 2023, not too concerned by what would happen, or so I thought until I was put in a room on my own where I was likely to spend the next 3 weeks. Luckily for me, all went according to plan, and I had no side effects and was released after 2 weeks rather than 3…………a result!

For 10 months after the transplant, we lived as near a normal life as we could, took the medication prescribed and all seemed well until January 2024 when I was told that the cancer had returned and was fairly aggressive. My initial response was to ask the consultant what we do next, which she explained in detail.  I said “I’d better get on with it then”.  New chemo has been prescribed and I have treatment twice a week and this will continue for as long as possible. Receiving such news suddenly brings into perspective exactly where you are and what the outcome is, and it’s this outcome which has played on my mind. Right, I thought I must be on a downward spiral albeit slowly. It was this thought that SCARED me the most and I can honestly say that until this point, I believed that I would never succumb to the cancer and all would be good. What a shock I was in for. Family and friends suddenly seem to have a slightly different relationship with you, maybe they are as concerned as me who knows? The pressure on my wife Gill began to show soon after this news, she had been concerned before but like me, I think she felt we would do battle and come out the other side as victorious. Unless we show our true feelings and fears I do not think this will be an easy ride. The spoken word has never been more prominent in our relationship than it is now, but sometimes it is difficult to say what you feel or fear hoping of course that you do upset the other party. Words need to be chosen, but oversights are acceptable.

I sit down now, usually by myself and say I’m dying but when I wake up every morning, I always say I’m still alive, let’s enjoy another day. Do I cry or get fearful in view of where I am at the moment? The answer is no. Since my mum and subsequently my dad passed away, I have found it incredibly difficult to shed a tear, it’s not that I don’t want to, it just won’t come. Maybe, deep down this is helping me come to terms with my cancer, I don’t know, but I am sure that at some point in the not-too-distant future it will hit me like a tonne of bricks.

My main concerns at the moment are Gill, the children and close relatives. I know my outcome so I will do all I can to make their outcome so much more joyful. Death is not what anybody wants but if others can be left smiling then the deceased has done a pretty good job.

My message to anyone else in a similar situation

Stay as positive as you can and don’t be afraid to seek help or advice.  Try and plan your life as though this is not hanging over your head.  Enjoy yourself but also make time just for you so you can sneak off and be with your own thoughts.

My own personal view is that people in my position are not heroes or even inspirational. They are brave, and I repeat BRAVE.

So much is made of people who appear on the TV as being brave or inspirational, but very rarely brave. My mum was incredibly brave and my dad, towards the end was also incredibly brave.  I know that many of you reading this will also have loved ones or friends who fall into this bracket.

Please feel free to reach out if you have any questions or want to chat more.  My mobile no is 07889805546 or email me at ianhensley54@gmail.com

In the meantime, I will soldier on to complete my Coast to Coast hike in May this year.

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