This isn’t really me, is it?

I’m looking in the mirror in a popular high street store changing room and I just don’t like what I see. This isn’t really me, is it?

My disease and its treatments have contributed to an early menopause with associated symptoms including regular hot sweats, massive weight gain, deterioration in my skin, dark circles under my eyes and an apathy that was simply not in my nature before all of this.

My body has been cut up and is badly scarred and I have a portacath permanently placed under the skin of my neck and chest which I can clearly see.

My hands and feet are sore and peeling as a side effect of chemotherapy and my once strong nails now break randomly leaving my hands and feet looking a real mess.

I walk badly with a lolloping gate due to pain in both my hips and back and find getting up from chairs and out of a car really difficult.

I seem to have gained 30 years and am now living in a world were my need for medication to keep me alive and my fast approaching death, together with the physical difficulties I experience, makes me feel that I’m now nearer 80 than my actual 51 years of age.

It seems I’m not alone in feeling this way. At a recent secondary support group for those with breast cancer, other ladies expressed the same emotion and frustration at how cancer and metastatic disease affects them.

For me I feel particularly irritated by the fact I am now so fat after fighting my weight my entire life and managing to keep it under control with sheer determination.

Cancer fatigue, together with no longer working and the fact friends always want to meet over food – and my complete loss of any willpower due to feeling sorry for myself – has resulted in my gaining 1.5 stone and I’m now the heaviest I have ever been in my life.

My oncology team remain unconcerned and, in fact, together with friends and relatives, find the fact I look “so well” (ie fat) a really good sign that the cancer won’t actually kill me anytime soon.

It is a very difficult line to walk. Do I attempt to diet – which I know will be hard and potentially be for the rest of my short life – or just keep eating and hope I just don’t get too big? 

The number of patients living longer with a secondary diagnosis of cancer is rapidly increasing as treatments improve. Many will now live years rather than months and so I feel there will be many who are starting to struggle with issues that may never have been considered important for them before. 

When I was first re-diagnosed and poorly I didn’t even consider my looks as it just wasn’t important.

But once my disease settled I became very aware of what had happened to me and nearly four years on I am becoming increasingly conscious and am struggling to cope with my definite and continuing physical deterioration.

Lately I have started to find it difficult to hear and have been assured by my husband that it’s just a case of my “not concentrating” rather than a failure to actually hear what is being said.

I wasn’t sure, so have done some research and found that hearing can indeed be affected by certain chemotherapy drugs and I wonder if this may in fact be the cause of my apparently increasing deafness. I will discuss this with my oncologist when I next see him but am horrified to think that I might now need hearing aids as well as a walk in shower, help out of cars and chairs and a disability parking permit due to cancer fatigue.

It just makes me feel so old and decrepit that I think it is starting to have a very negative affect on the way I feel about myself and the future.

So what could be done to help?

I wonder if again there is a need for better support for patients in this position? Appropriate advice is needed to target these issues for those with some months or potentially years left to live to add quality to their remaining life.

Dealing with these lasting effects of treatment and disease is mentally and physically demanding but is often overlooked by the oncology team. Review of disease status and current treatment side effects become the focus rather than looking at potentially improving the quality of life of patients struggling to face unwanted physical changes and challenges. 

I am unsure where the responsibility for this should lie. Should it be a patient’s GP within primary care or part of the oncology service or perhaps this is another service that would sit well within palliative care? I do feel it’s another thing that is currently lacking and needs review.

For the time being I need to decide whether to buy new clothes in a larger size or put myself on a diet to try to lose some weight. Currently the jury is out. I’ll let you know when I’ve made a decision.