I’m caring, not a Carer.

Terry Fox is married to Geraldine Fox and they have two grown up boys. Geraldine was diagnosed with kidney cancer in 2014. As part of #carersweek Terry shares how it is to support and care for a loved one through such a physicallydemanding, mentally challenging and life changing diagnosis.

A blog by Terry Fox

Terry Fox is married to Geraldine Fox and they have two grown up boys. Geraldine was diagnosed with kidney cancer in 2014 and in this blog Terry shares how it is to support and care for a loved one through such a physically demanding, mentally challenging and life changing diagnosis.
For me, the start of all this was when I’d been sent to a private hospital by the NHS 60 miles from where we lived for a shoulder operation, so my wife (Geraldine) and I stayed at a local hotel the night before the operation. That night, Geraldine was kept up for a lot of the night by a sudden severe pain in her right side.  Both of us were thinking about my operation, so neither of us thought much about it and the pain eventually stopped So, we got on with getting through the operation and a couple of days later Geraldine drove us back home where I started my recovery.
Two days later Geraldine had the pain in her side again, this time accompanied by blood in her urine. She called her GP and was given an urgent appointment and two days later she is in hospital. Now, I’m worried. Suddenly recovery from my surgery is not my biggest concern.

I’d been to visit her in hospital (I’d taken my sling off by this time and could drive) and just got home when she sent me a text – ‘they’ve got some answers, can you please come back to the hospital, and I’ll explain’. I thought that was a bit cryptic, but OK. I got back in the car thinking ‘what’s going on’?  When I got there the curtains were drawn around her bed, and I thought oh, that’s strange – as soon as she saw me, she burst into tears.  “I’ve got kidney cancer” she said, “I don’t know any more than that, but the doctor said he’d come back when you got here to talk to us both”.  Just like that, out of the blue, my life fell apart. I felt like I’d been kicked in the guts. I’m not an easy person to make cry but that did get to me, big time.
Geraldine and I had been married for over 30 years, our children are grown, and we were looking forwards to retirement together. We were both bewildered and shocked. I had lots of questions, but I didn’t want to worry her anymore so said, ‘don’t worry, we’ll cope whatever happens’ and pushed my own worries to the back of my mind. One of us needed to stay strong and, understandably, she was in bits.  We asked the nurse to call the doctor to talk to us – but apparently, he’d said nothing to the nursing staff on the ward and had gone home! This left neither of us any the wiser about what this diagnosis meant to us, our children, our lives.
Geraldine told me she didn’t know how to tell our children, I said I’d do it – I had no idea what I’d say to them, we didn’t know anything yet and they would have questions we couldn’t answer.  When I got home, I thought do I tell the boys?  There’s no point putting it off, it’s not fair to keep it from them because we don’t know how this is going to pan out.  So, I rang our eldest, who is in the armed forces and ask how he was and where he was and explained that Mum was in hospital and he asks, ‘is she all right’? No, not really, she’s just been told she’s got cancer and I told him not to worry, she’s in the right place.  Next call is to our youngest, and I go through it all again. These were probably the hardest things I have had to do, because part of me felt they didn’t need to know, and the other part thought it was unfair to keep them out of the loop.
The next day Geraldine is sent home, and we’re talking in the car and as the pain and blood in the urine has stopped, she feels she can cope until she sees the consultant. I suppose in some ways I tried to block it all out. Then later the blood in the urine and pain started again. I’m really worried now, she can’t wee, all that’s coming out are blood clots and though she thinks she’ll be OK, I know she won’t, and I feel like she’s fighting me. I ring 111 and they persuade her to go back to hospital. ‘This time they’ll do something’, I think to myself, ‘they’ll have to’.  At the hospital they examine her, give her some painkillers, and remarkably send her home again. I’m thinking, ‘what on earth do you have to do to get taken into hospital these days, how bad do you have to be’?   All the time I’m thinking to myself, I really feel let down, I did, I really felt let down.
Geraldine was called forward for her operation about six weeks later and I was relieved that someone was taking this seriously at last. On the day, Geraldine is all prepped up, then the anaesthetist says she’s got a temperature and the operation is cancelled. I felt so sorry for her after getting all psyched-up only to be dropped at the last minute. Two-weeks later she went back in, the prep went well, and she had the op and I waited until she came back to the ward. She was out of it most of the time and I was told to go home.
After 24-hours they wanted to discharge her, I really didn’t think she was in a fit state to leave and neither did she, and we persuaded them to let her stay another night and the next day she was discharged. Now I’m worrying and thinking to myself, why are they letting her out so soon, she can hardly walk; she can’t walk out of the ward let alone walk to the car. So, I find a wheelchair and push her out of the hospital and help her into the car. I can’t believe they’ve let her out, but she says if she’s home she’ll feel better. The eight-mile journey home was horrendous, the main scar was right where the seat belt goes on her body and she felt every jolt and pothole, no matter how hard I tried to drive smoothly it was a rough ride for her.

In effect, Geraldine was bedridden to start with which meant I could at least look after her until she got stronger. A good bit of foresight was while she was waiting for her operation we bought electric beds, so instead of her having to put stress on her stomach and the stitches, the bed could raise her to a sitting position, it was a God send. Once I got her home, I did feel better because I could look after her and I was there to help her. Work wasn’t helpful though, they put a lot of pressure on me to go back to work, my wife came first, but it didn’t help.
As part of her treatment at home Geraldine had to inject herself against blood clots for a month afterwards, which I offered to do for her, but she thinks she ought to do it for herself and does. It’s one of many things she won’t let me help with but that’s what I want to do, help, feel useful, be a part of her recovery. But often all I can do is household tasks and watch her suffering; I feel useless big time.

I just don’t understand why this happened to her.

Since those traumatic days we have been very lucky. Geraldine’s cancer was caught at stage 3 before it had spread very far so she has a good chance of a normal lifespan. Although kidney cancer has a nasty habit of returning 10 or 20 years later so we will never be sure, and so far, we have clocked up seven-years clear of cancer.  We have learned to live for today and not think too far ahead or take anything for granted. We have both learned to make the most of every day because none of us knows what the future holds.  We have learned to be more honest with each other about how we’re feeling.  And we have learned what is most important to us and have made lifestyle changes to improve our quality of life.

As time goes on, I do think I get more complacent – I don’t think about yearly monitoring scans which still cause anxiety, and I remember if she’s a bit off with me around the anniversary of her diagnosis, to roll with it. I know that if the cancer comes back, it will shock us both as badly as we were shocked the first time but as time goes on it gets easier to ignore the little voice in my head that says, ‘don’t forget what you’ve been through, this can happen to anyone, anytime’.  Two years ago, we were reminded of this when my brother was also diagnosed with kidney cancer, again stage 3, treated at the same hospital as Geraldine and operated on by the same surgeon.

Looking back seven-years on, if anything I am still shocked by the lack of reaction from the hospital staff. I know they see loads of this, but I don’t, and I didn’t feel included in any way or at any time with what was going on back then. We were given a phone line for our key contact, but it was a voicemail and when I needed to talk to someone urgently I couldn’t. A call back two days later simply wasn’t quick enough when I needed to know whether my wife needed to go to hospital or not. The other thing I would have done is waited longer before telling the boys. I just felt I over worried them.  Maybe if I’d waited, we could have told them once we knew more, but we didn’t know how long that would be, or what Geraldine’s prognosis would be. It would have been awful to not to have told them and find out she only had weeks to live.

There is no rule book on how you cope with a kidney cancer diagnosis, you can only do the best you can do, be as strong as you can be…. and care always.

All the very best to you all.

Terry.

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