It is almost exactly five years since I was told I had gone into remission from my cancer. A time of great joy and hope for the future. But it is hard to believe how things how things have gone on in those five years. I did not expect to be where I am today.
I remember having the scan at the end of my chemo, and true to how it had been right the way through my chemo, they could not get the cannula in. It needed to be in, as they needed to put a dye into me whilst on the scanner. This was to show up the insides of my organs.
Every time I had gone for chemo, apart from the first time, it took seven attempts to get the cannula in. It was excruciating. For some reason my veins just collapsed as they tried to get it in. On this occasion, however, after the usual seven attempts, the Haematologist came to see how we were doing, and took pity on me, saying to the nurses,
“Leave her. She has suffered enough.”
So, the scan was done without the dye. The results would not be perfect, but at least they would be able to get some idea of whether the cancer had gone or not.
And so, some time later, I found myself in the Haematologist’s room, waiting to hear my fate. It was unbelievable – although he could not see absolutely everything, he could see enough to be able to say to me,
“I cannot see everything, but from what I can see I am going to consuder you to be in remission.”
A huge cheer went up as we thumped the air in exhilaration. The whole hospital must have heard it.
He then told me that it would be a good six months before I would feel anything near normal again. So I was prepared.
Life became very exciting, and each week I made huge strides. I could walk with a walking frame, then, in time, with two canes. I began going out and socialising again. Life was good.
I was determined that I would walk properly again. And so, Lent of 2016 provided a good opportunity. I made the decision to go to the little church way out in the heart of the Lincolnshire countryside, and walk, whilst at the same time meditating upon all sorts of things to do with my life. Six whole weeks of walking every single day. It was a good place to go because no one went there much, and the tiny aisle had pews at either side of it that I could put my hands out and hang onto them if I began to fall.
At first, I managed 400 steps. Amazing! Then that gradually increased to 1000 steps, then 2000, until by the end of the six weeks I could walk 5000 steps. I still have that amazing and joyful time documented. All was going to be well. I felt well, and I was going to walk again.
I do not know what happened after that, for, week by week my ability to walk decreased alarmingly. I knew that I had no balance, as the Medical Rehabilitation doctor had told me that. So I was never going to walk without canes. But everything went. To my dismay and great grief, I lost it all. I had physiotherapy, but the physiotherapist gave up on me, writing a Report that said that there could now be no improvement.
It is a mystery to me as to why this happened. Gradually my pain was increasing too. It was all put down to the peripheral polyneuropathy. Nothing could be done.
I am now in the state where I can hardly walk to the bathroom. I just about manage with a walking frame, but the pain that this causes is phenomenal. Additionally, my breathing goes, simply going to the bathroom, and my oxygen levels drop alarmingly. My heart rate goes very high, and all that I can do is lie on the bed for half an hour until I can breathe better again.
Each task, for me, is like climbing Everest. Washing in a morning, and doing my teeth has to be done in bits, so that it can take me an hour to even get washed and dressed. I cannot dress myself – my husband has to help me. The pain that I experience on trying to dress myself is excruciating.
Life is very very hard. Sitting up in bed is very hard. It is exceedingly painful and I cannot sit up for very long. This of course makes typing very difficult. I have to do it in short spurts!
It is now Lent again, and just before Lent, so great was my desire to try and walk again that I went back to the little church, with a view to doing the same as I had before. It MUST be that I could overcome it, I felt. However, I failed miserably.
I now look back on Lent 2016 and wonder. What went wrong? I was so full of hope and joy. What happened?
Since then I have been told that I should be in a Home. Not by Social Services, but by “do gooders”.This has given me a very bad time, and produced much blackness in my life. This may have shown up in my poetry at times. Along with this has gone intense fear, and some anger. My days are not good now.
I try to be cheerful. I try to see the good in everything. But I admit that it is very hard. I am angry at this bloody cancer. Yet there is nothing I can do.
The one blessing is that I can still go out in the car in an afternoon and listen to the birds. That is what keeps me going. Plus my faith.
Of course, the blindness too is exceedingly difficult, as I have also lost the feeling in my hands and feet, and so I have lost the main means that blind people have of finding things. I need my husband to find things for me all the time.
We cope. We married each other for better or worse, and in sickness and in health. We will NOT be separated. We have our beautiful dog, Hope, and I will not be separated from her. I love her and she loves me.
I manage to keep cheerful most of the time, but when this Home business came upon us, I went on a complete downer. As the lighter nights come, and the warmer weather, I shall improve. Everything will feel better.
Sometimes my moods are dark. Often they are cheerful. I hope you can bear with me. Thankyou for reading this.