Are you caring for someone who has cancer?
I know that if the person you are caring for is a loved one it becomes increasingly difficult to maintain a positive attitude and keep going.
I lost a very dear husband to cancer and I experienced all the ups and downs, the good days and the bad days, the depression, denial and acceptance, the pain and suffering. You feel as if you are going round and round in a circle, desperate to be able to do something, anything, to help your loved one. And all the while you are feeling more and more isolated and alone.
As a carer it is so easy to feel on your own. It seems as if you have been given a job which, although you have had no training for, you are expected to know exactly how to carry out. Cancer is a terrible disease, and to watch someone that you love change so much as the condition gradually progresses and worsens is both upsetting and frightening and in your darkest moments you wonder how you are going to cope. We start off by thinking we can manage on our own but soon come to realise that we can't.
That is why I am publishing this site.
Although there are organizations out there that offer support, especially the hospices who give wonderful help to both the patient and the carer, I found that during my lowest times, when I was near to tearing my hair out with frustration and feeling so desperately helpless, it was a great comfort to be able to talk to somebody one to one. Someone not connected to the family, who would listen to my fears and worries and give me some moral support. I was very lucky as I had some wonderful people who were, and still are, a source of strength to me.
Early on in those dark days, I came to the conclusion that there are a couple of very significant points that a carer should bear in mind. First, that no matter how hard it is, let the person you are caring for know that they are in total control of their own life. This is very important. Second, that your loved one's quality of life is the best that you, as a carer, can provide.
This is a photograph of my husband Bob before he was taken ill.
As you can see he looks a healthy fit man so it was a real body blow when, in March 2000, he was admitted to hospital and diagnosed with prostate cancer with secondaries in the bones. We just thought that it was a touch of arthritis in his hip that had been playing him up.
You hear of men with prostate trouble being cured by an operation so it was another body blow to be told that an operation was not possible because the cancer had spread too far.
As you can imagine, we were shell shocked at first, but this was a decisive moment for me so I took a deep breath and told Bob that OK we'll fight it together. We'd had plenty of other things thrown at us during our 33 years of marriage and we'd got through them so we would get through this; and I stressed that we would fight it together.
However, as time went on, and things got steadily worse, I realized it was only a matter of time before the end came. So the lies started to creep in.
I kept telling Bob that he would be alright. He was having monthly hormone (zoladex) injections and even though he dreaded them I still kept encouraging him, saying they would make him better and that he would soon be back at work. I suppose it's only natural to try and make the person you love do what you think is best for them.
Then the depression set in. He felt so ill on the treatment that in August 2000 Bob said that he would have no more injections. We had a family meeting with our son and came to the conclusion that although we didn't agree with his decision we would support him all the way. Bob knew that by giving up the medication he would be shortening his life but he insisted that it was what he wanted.
It was at this point that I came to realise that Bob having total control of his own life was more important thatn what my son and I wanted. After all, Bob was the one with cancer not us.
I gave up my job to look after Bob 24/7, and took him out everywhere. We had always been close but we became closer than ever and never went anywhere without each other. Looking back now, I can draw comfort from those few precious months when we were able to reminisce and talk about our life, and the laughter and tears we had shared over the years.
As the months went by, Bob became weaker, and the pain got more intense. At times it was unbearable to watch him struggling to cope. I felt helpless, and although I had help from the hospice and our GP there was still that terrible feeling of being left to manage alone.
After a while it got to the stage where Bob didn't want food, although he would try to eat a little. I would cook things he'd always liked in the hope that he'd be tempted to eat some of it but close to the end he couldn't even stand the smell of cooking. I tried to tempt him with jelly, which he'd always loved, but he couldn't face it. My son and I took to living on toast, MacDonalds, or Fish and Chips so that there'd be no cooking smells in the house.
I have been told that I lived the cancer with Bob. This is true, but there were many times I could have run away and hid somewhere because I was so uptight. But I'm so glad that I was able to keep strong for him and support him in his decision to abandon the medication. It was hard but I was determined that if that was what he wanted so be it.
Bob finally lost his fight against cancer on September 25 2001. He had survived 13 months longer than the medical staff expected. I'm convinced this was due in no small way to the fact that he had had full control of his actions, and because of this had retained his dignity and self-respect.
I will always be extremely grateful to St. Mary's Hospice for the kindness and support they have provided to Bob and myself.
If you would like to talk to someone one-to-one, please contact me at kay.steele@blueyonder.co.uk.