The stigma of a changing appearance.

As I have mentioned, several times in the past, I never have to think too hard about  blog content for the week, and very often one subject gets talked about more frequently than others. In this instance the subject is 'appearance during cancer treatment.'

On my return to treatment in the new year, I met a fellow patient who I hadn't seen for some time, and I struggled to recognise her. I was truly stunned how her appearance had changed in such a short space of time.Very little is able to surprise me, in terms of the affects of cancer and it's treatment, on people, but this time I was. I knew that I had been through everything that she was going through, and all the changes in my appearance. But why was I shocked?

This made me think about how people who were much less experienced than me, might react when faced with one one of their friends who was going through treatment.My family and friends have been through this, and at times still see changes in me depending on my treatment, but I have never noticed any visible signs of shock. Now I fully understand what they must be feeling.I am always aware that with cancer as my constant companion, I am much more accepting of things, than people who have very little experience. Sometimes I forget that. Things that are normal for me in my work, are not normal for most people, so of course their reaction will be a lot different to mine.

I have been contacted by several people this week, who wanted to talk about issues surrounding their appearance. One lady in particular was disturbed about her hair loss. Hats, scarves and wigs, just couldn't resolve how she felt about losing her hair. To make matters worse, someone challenged her when entering a female only area, as from behind they thought she was a man! Just imagine that scenario happening to you.

Personally I have always been a confident guy, and when I lost my hair to chemo, I started telling jokes about it. But it can  have the opposite affect on people too. I also realised that other changes were part of my regime, and I accepted them, not willingly though! However the world can be a very unforgiving place, if you are sensitive to the enforced changes that your body goes through. 

But, like most things in life, it is not all about you! It is important also to consider how other people might feel when they see you. Will you feel comfortable if you know they feel awkward looking at your scars etc? My personal example of this was a great friend of mine who had a very serious operation to remove a tumour from his head. After surgery he had a large scar and his head was shaved. I told him that it was very impressive, and I would be proud to show it off! His opinion was that he didn't want other people to feel uncomfortable, so he always wore a hat. 

The importance of your appearance during treatment can not be underestimated, as our bodies may undergo some incredible changes. In many instances this affects our psychological well being, which of course is linked to our physical issues.Things have improved, even in my few years, of experience, and we are now understanding the 'holistic' approach to treatment. But there are two factors that are difficult to control. Firstly, how we see ourselves, and secondly, how others see us. Generally those views are very different!

It seems that these days, particularly in the media, appearance is very important. Actors etc are having age defying treatments, and we seem to judge people based on quite unreal standards. If I am honest, I think I lost a lot of confidence when my appearance changed, even though I tried not to show it.I know that this issue can appear much worse for women. 

 What is your opinion? How do you feel when you see someone who is going through some tough treatment? Do you feel awkward? Do they? How do you deal with those issues?


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Sometimes it's hard to look in the mirror.

For the first time since I started this blog, I thought I might be suffering 'bloggers block.' Not as painful as it sounds! Nothing had really grabbed my imagination, but then I received two 'tweet pics', from people who are going through transplant, and bumped into a lady in clinic who I hadn't seen for ages.

I struggled to recognise any of them. With a combination of the drugs and treatment, they were going through, their physical appearance had changed dramatically. All three had lost their hair and a lot of weight.Despite my own personal experiences, and knowledge, I am always shocked to see the effects of that on the body.

Changing appearances, is a common issue for people with long term illness, and I had written the below piece last year. With what I have seen this week, I felt that it would be appropriate, to re post it now.

 

I  have been talking to a lady, who has been suffering from a disease very similar to my own.Until her diagnosis she enjoyed a very normal life. Now, her life has been turned upside down. I have got to know her, as she was introduced to me, because she wasn't sure if she would have a stem cell transplant, and wanted to talk to me about some of the possible side effects, and how life might be for her afterwards.

One of the things that was important to both of us, was nice holidays. She told me that she was very proud of her figure, and that she couldn't wait till her summer holidays came, and she could wear her bikini.She always looked after herself, and her appearance is very important to her.I did explain that the transplant regime would be tough from that perspective.She decided to proceed with the transplant, as in honesty, there was no other realistic option.

We both agreed that it would be one of our ambitions, once all this tough stuff is done, to go on a lovely warm, luxury holiday. I have only been able to go away to foreign climes for one week, in the last five years, so I am looking forward to it too! When we spoke yesterday, she was in hospital, suffering from GVHD of the gut, being unable to keep any food in her system. Her hair is starting to grow back, but she has lost a stone in weight. She is now on a high dose steroid regime of treatment. Again, we talked about holidays, and appearance, during treatment.

My 50th birthday party

 

 One major side effect of cancer and it's treatment, is the possibility of your physical appearance changing. At times, those changes can be quite dramatic. These can certainly have a long lasting effect on you both psychologically and emotionally. If this happens it can also affect your libido, which can create relationship problems.Obviously, where surgery is involved those changes are permanent.

Like most people, I was aware of my own appearance before illness, and I always struggled with my weight. That was the one area that I would have liked to have changed. I did work quite hard at times but without any tangible reward, so I accepted my look, after all it was me!! But after diagnosis, there followed a roller coaster of appearances. So many, that at times, I was frightened to look in the mirror, in case I didn't even recognise myself.

 

When I was first ill, my body blew up, like a football. Then I had my regular chemo sessions and lost a lot of weight. I had my transplant, and couldn't put any weight on. I then got sick and needed high dose steroids, which gave me large face and stomach. My weight was going up and down, and because of the steroids my water retention was high and I looked permanently bloated. To add to this, my hair was coming and going with the drugs. One minute I had hair, the next I didn't. Once I got GVHD on my liver, all of the above happened plus, I turned yellow!!!

Working during chemo (51)

Not a great look eh?? Couldn't now imagine myself appearing in an episode of Baywatch. Most of my muscle definition has disappeared, as I have been unable to exercise. After this experience, I have become much more accepting of my situation. I try to make the best of how, things are. After all I am lucky to be alive.

I have now built up, a 3 size wardrobe of clothes. M, L + XL. Currently, I am stable in medium, and have been for some time. I have been told that any further treatment, should not involve steroids as my body will have overdosed on them.

If I wasn't the kind of man I am, I think I could have been broken, but I have always managed to see the funny side of things. I remember when my youngest son came to visit me in hospital he told me that I looked like Mr Potato Head, (a childhood toy) My eldest said I looked like a bouncer, because I had no hair, and a very large neck.

I can see that these issues may effect women psychologically, more than men. After all, we all like to look our best. But with factors beyond our control, it can be very difficult. Like all side effects of illness some people deal with it better than others, but It is certainly one of the toughest challenges I have faced. How to accept your ever changing appearance?

Have you been affected by any of the above issues I have mentioned? How have you dealt with them?