Thursday 25 April 2013

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?















4 comments:

  1. Hi Chris, I am in the middle of putting my weekly blog round up together and as I usually try to group similar themes together, this particular post will be added to the things we should talk about more openly but don't grouping! It's not often we come across men writing about the changes to physical appearance wrought by cancer - so I applaud you for writing openly and honestly about it.

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  2. Hi Marie

    Many thanks for your comments. When I decided to start this blog my commitment was to be as honest as I could about things. I wanted to write about the things that people think, but don't discuss.

    Appearance with treatment,is a massive thing to most people, and is an issue that is very understated, and barely mentioned by professionals.

    Patients joke amongst themselves, but it is yet another issue that makes the whole cancer experience so tough.

    Thank you for taking the time to comment and share this post, it is much appreciated.

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  3. Hi Chris

    Thank you for another great post and completely agree on how appearance with treatment is a bigger issue than is talked about not only by medical professionals but people in general.

    Hair loss through chemo is commonly discussed and there are lots of organisations that help with this but talking about other physical changes such as weight loss/gain is understated as you say and when highlighting potential side effects of treatments e.g. steroids can make you gain weight around your neck area etc.

    From my own personal perspective, my cancer diagnosis came at a time when I was feeling physically fit and in my opinion looking better as I had taken up climbing as a sport and was losing weight and toning up having got a little lazy with the regular exercise.

    I was told of the side effects involving the various treatments I underwent and aside from the hair loss they ranged from weight gain, dry skin, eye infections, joint pain, extreme fatigue etc etc. This was a real knock to my confidence and was another hurdle to get over on top of everything else.

    Three years on, I'm now climbing again and regularly do it as my form of exercise and as a way of challenging myself both physically and mentally - it can be scary getting to the top! It makes me feel strong knowing that I can have a go at completing harder routes each time I go. I will never be as good as some of the folk I see at the wall but being able to have the energy to be able to climb is my own sense of achievement and a reminder to myself that I am still alive. Sentimental maybe but being able to do the day to day things some people take for granted is what keeps me, in part to want to move forward and that is good enough for me.

    Thanks again for your thoughtful and insightful post.

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  4. Hi Vanessa

    So lovely you were able to stop by the blog and write the above. As you are very aware there are so many issues arising from a cancer diagnosis that are not really hilighted, more likely glossed over, in the Ts and Cs of your treatment permission form.

    The appearance changes, I was aware would happen, as I see them on others, but never failed to shock me when I looked in the mirror.

    I too always wanted to lose weight, but not necessarily in that way!I was in the fashion business so my appearance was very important.

    I admire you for how you maintain your exercise etc. Unfortunately I am not able to do that, but I am in not bad shape considering :)I guess it is important to have a focus, and not one that is unachievable or that will lead to frustration.

    Good luck with your climbing etc, and it is great that we can follow each other's progress through social media.

    I look forward to welcoming you back to the blog soon, as your comments are very valuable for the readers. Chris xx

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