I will be able to concentrate on getting well…

With Carers Week underway we thought it might be useful not only to acknowledge and appreciate the support carers provide but also to recognise that sometimes its the carer themselves who get a diagnosis of cancer.

Caring responsibilities can be exhausting enough but imagine the additional strain of a new diagnosis. That’s exactly what happened to John and I recount his story from our Every Step of the Way publication here:

“My name is John. I was born in 1953. I live with my wife who is the same age as me, in fact, we are only a month apart in age. We live in a suburb of a town. I have been a carer to my wife since she had a stroke when she was in her 30’s. That was a terrible thing to happen to someone so young. It left her unable to read or write and her speech is very difficult to understand.

At the beginning of September of 2013 I was diagnosed with cancer of the oesophagus. For the next few weeks I didn’t receive any prognosis or treatment for this condition. I was told that I would be told what was wrong with
me at an appointment with the Consultant due in mid-October at the hospital.

I went to that appointment with my wife. I was told that I had a terminal cancer of the throat. I went quite numb. However, my wife wasn’t convinced. She had been a nurse and some of the things that were being said to me were not quite ringing true with her. She tried to explain her feeling to the nurse on reception but she just turned her eyes up. My wife noticed that there were 2 appointments for Smith on the same day.

I was very upset by the news and couldn’t think straight. My wife was doing the best she could but her own problems were not helping her. One day the Stroke Association home visitor called. She told us about the cancer advocacy
service and said that she would make a referral to them. This she did. In the meantime the Doctors did realise that they had told me some of the wrong information. I am not clear how this happened. However, my prognosis had
changed and they were now saying that my cancer was not necessarily terminal.

Richard called to see me quite soon after that. He was an advocate. I explained my position to him. I told him that I suffered from asbestosis and emphysema and that the Doctors were saying that an operation may not be possible
as the Doctors were concerned about the effects that an anaesthetic may have on my lungs and kidneys.
I told Richard all about my problems and those of my wife. I was feeling a little better about things as now there was a ray of hope. I had another appointment coming up and would contact Richard after I had been seen.

I went to see the consultant again in November. They said that I could go into hospital for an operation. I am now in the hospital, but, unfortunately, the site of the operation has become infected and it looks like I will be here for some time.

My wife does visit me but it’s a very difficult journey for her as it’s a long way to go. She does drive but doesn’t find it easy. We have a great deal of problem with communication because I have had a tracheostomy.
I didn’t manage to get around to telling Richard that I was going into hospital before I went. I had told him that I would let him know what was happening but things moved very quickly and I didn’t get back to him.

Peer advocate Richard

My wife has found it increasingly difficult to deal with things at home. She seems to be getting letters from the hospital that didn’t make any sense. This was particularly difficult due to her communication problems. She can’t pick up the phone and easily have a conversation with someone. She began to wonder if they were still mixing me up with someone else. She has also had letters from the benefits department asking me to make an appointment to see if I am still eligible for benefits. She can’t deal with this at all.

However, the good news is that Richard had been made aware of my current position. He has contacted my wife and is going to go and see her this week and help her sort things out. That will be a great weight off my mind. I will be able to concentrate on getting well and not worrying about her and what’s going on at home.

The help from the cancer advocacy service is for people ‘affected’ by cancer and not just those that have it. Richard’s input is of great help. He understands my wife’s condition and makes allowances for her communication problems.
I don’t know how long I will be in hospital but I am very reassured that Richard is going to help at home.”

Marie McWilliams, OPAAL

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Little things make a world of difference

This week, as you may know, is national Carers Week.

I’ve been working in the voluntary sector for a long time now and Carers Week comes round like clockwork amongst the other special awareness raising weeks we see. But this year Carers Week  for me is different because for the first time I identify myself as a carer. It’s especially significant for me because caring is currently my main role and everything else is taking a back seat.

The sudden dislocation from normality, from what was once my real life, has been quite a difficult thing to come to terms with. Whilst none of us like to think of ourselves as labelers we all do it, especially to ourselves. You know the kind of labels I mean: wife, mother, daughter, sister, hard worker, dog-lover, hen-keeper, keep-fit lover, wildlife enthusiast, keen gardener, etc, etc… The difference now is that because everything apart for my new caring role is taking a back seat many of the previous labels I gave myself are left behind with a tinge of regret and a hope that they’ll be picked back up at some time in the future.

Don’t get me wrong, I’m a carer first and foremost because I have such love for my son that I could never think of doing anything other than looking after him at a time when he needs me most. I’m sure the majority of carers are the same. They don’t care out of a sense of duty but out of love.

The issue is that caring comes with a whole range of problems for the person doing the caring. The first thing to be affected is work. Understanding employers, like mine, are worth their weight in gold. To know that  you have the support you need whilst you try to get onto an even keel is great. I’ve been very fortunate in the support I’ve had and continue to have but I know that many other carers are not so lucky. So suddenly, the main thing you do during your working week takes a hit. You miss out on the things you love most about what you do, you miss the people you work and mix with, even the regimentation of the working week is gone.

Yesterday I should have been in London attending the Cancer, Older People and Advocacy programme management board meeting. Instead I was writing this at a desk in my son’s hospital room in Glasgow. I missed out on an opportunity to meet up with good friends, on feeling productive in a constructive way, on contributing to what’s going on and in supporting delivery partners in any way I could. My working week has been halved so I can try to deal with life and work but my image of myself as a dynamic and supportive partner in the job I do is taking a hit.

Then there are the things I love to do but now miss; to walk my dog – she’s currently temporarily re-homed with my dad; to let the hens out in the morning and put them in at night – they’re at home and I’m not; the keep-fit is a distant memory as I’m rarely at home when it’s on; the wildlife isn’t quite the same out of a window in the west end of Glasgow as it is in the Highlands where I live; my garden isn’t getting the love and attention I usually give it so there’ll be fewer colourful flowers to sooth the soul in the summer ahead. Everything is taking a hit.

All of that means I’m not getting the exercise I’m used to, I’m not eating as well as normally and I’m feeling less good about myself as a result. With no prospect of life returning to any sense of normality in the foreseeable future I can see the need to find ways around that and to ensure I take better care of myself.

The biggest hit by far though at present is the distance between where my son is being treated and home. The care he’s receiving is exemplary, the staff are wonderful and facilities second to none but it’s not home. My husband is at home while we’re here, it’s not ideal.

So now I’ve told you how it is for me as a carer. My life is currently quite different from how it used to be. My main focus is and will remain my son and getting him well again. That’s what it’s all about for carers – the wellbeing of the person they care for.

This Carers Week unlike the last, I have a definite image of what it is to be a carer. I see a swan, reasonably serene on top of the water but paddling frantically underneath. So if you’re in a position to do something, no matter how small, to support someone with caring responsibilities this week, next week or any week, then please do it because little things make a world of difference.

Our Cancer, Older People and Advocacy work is all about supporting older people affected by cancer and many of them are carers like me. Advocacy can make a really positive difference to the lives of those it supports. If you live in one of our service delivery areas and you’d like to make a difference then please do get in touch. You’ll find contact details on the About Us page of our blog.

Marie McWilliams, OPAAL National Development Officer