We have the tools and things must improve!

This week has been treatment week, so Monday and Tuesday are filled up, but I always try and make the most of my time, and am generally communicating via Twitter or talking to staff and patients. I have a continual thirst for information.I managed to talk to a good number of patients, and also a couple of very senior Health Professionals.

As you know, my 'crusade' is to improve support for people affected by cancer. Obviously, I make my own observations of things, during my endless visits to hospitals, but I am intrigued to see how other people view their situation. Do patients feel that things could be improved or are they content with what is being done? I also wonder if Health Professionals feel that more should be done, or they believe that the right quality and quantity of support is available.

I was lucky enough to talk to two inexperienced patients this week, in very different settings. Both had diseases and treatment plans similar to my own.I don't know why, but I am always shocked at still, how little support people receive, outside their family and friends.It seems they have had a couple of brief chats, been given some information booklets, and then put into the system.Of course, although advised not to, most people take to the Internet to find out more,and that's where the troubles begin.

Information, is only part of the story of support.We also need help once we have the information. It really feels like it is assumed the job is done, when you have been handed some books about your disease and treatment. Sure, we have come a long way, as even only ten years ago we were struggling to find any good information.But now we are swimming in it. Booklets, constantly updated and minute by minute news on the Internet.However, we need to progress from here! 

Much more practical support is required.We actually need to invest more time in each patient, to help them through their psychological and emotional issues.To understand them as a unique person, not just a case file. We have to prepare people as best we can, for their treatment, and offer support as they continue on their path. In this day and age it is not right that we still see so many frightened people, starting treatment, because we most definitely can do more. 

Not only on the treatment path is this true, but it gains momentum, once you leave the perceived safety of your hospital. In most cases, once the clinicians have done their work, you are let loose, to make the best of things, in what is very definitely a new world for you.Now with different information in your hand, you try and put your life back together.

The people I have talked to this week, describe, their views, of disjointed services, and poor communication. Almost finding people, by trial and error, meaning some maybe lucky, and others not so. Is it any wonder that people will then keep returning to the hospital, many with issues that could quite clearly be sorted at home or in a community setting. No one wants to be dependent on the system, but currently it is not helping us be independent.

As a business guy I understand the many issues involved here. Primarily of course finance. However sometimes with a different way of looking at things, there are ways of solving problems without spending stupendous amounts of money.

More people are being diagnosed, with cancer, and with advances in treatment, are living longer with the effects of it.There are many people like me, out there who would happily share experience, for the benefit of others, at whatever stage it was required. We are already doing 'buddying,' etc, but not really to the level required, and there are many different ways that experience can be harnessed, particularly with the use of social media.

The N.H.S do their thing, and charities do theirs. Sometimes they collaborate, sometimes they don't. Pilot schemes come and go, support groups open and close. Who takes responsibility here? Sometimes there can be so many organisations involved in your care, you get frustrated, as no one appears to take charge of your case. All designed to help you, but rarely coordinated, and more a scatter gun approach. 

I am certain, that if more of the right support was given, there would be less of a burden on the system in the long term. But more importantly, more people would have a greater feeling of worth about their life. It is a wonderful thing to be given extended life, of course, but sometimes it can be very difficult making a new life, whilst trying to deal with health issues from the old one.

These are thoughts I have gathered, over the last few weeks, through my personal experience. What are your views? Perhaps you have a positive story of support you could share? I look forward to hearing from you. 

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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?


This blog has been entered into The UK Blog Awards 2014 #ukba14 If you are enjoying my work I would be very grateful, if you could click the attached link and vote for it. We are in the last week of voting now, and every vote counts! Tu :) 




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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?

Loneliness, the side effect with no cure

When I started this blog, I mentioned the feeling of loneliness that can play a big part in the lives of people affected by cancer. Today I want to go into a bit more detail about that, with some examples. Like a lot of things in life, it is hard to imagine, these effects unless you have experienced them yourselves.

As the regular readers of my blog will know, I have a wonderful family and a large, fantastic group of friends. I am involved in numerous projects weekly, plus I am still having regular treatment. So there are very few times that I am truly on my own. Yet there are many occasions when I can feel lonely. That doesn't make sense I can hear you saying.I know it sounds crazy, but I am going to try and explain, now, how that works.

Ultimately, all the things that are happening to me, both physically and mentally, are things that only I can deal with.Sure, we can talk about them, but I am the one who has to decide. So many decisions to make, and even though there is so much information around, which sometimes can confuse matters, the decision stops with me. Have I made the right choice?? How will this impact on my life, and my family?

Making treatment choices, sitting with drips and machines for hours on end. Taking drugs, day after day and wondering what sort of effect they are having on your body. Those are only thoughts that you can imagine, unless you have experienced those things. Hours and hours of hospital visits, numerous discussions with doctors and health professionals, about your prognosis. Weighing up the pros and cons of your treatment. Will it make you more sick than the disease? What will your quality of life be afterwards?

When it comes to the the physical treatment, it is only the patient that can deal with the chemotherapy, radiotherapy or surgery, and also the fallout from that. Everyone can be with you on your journey, but you are ultimately on your own, with most of the major stuff.

" Of course, this doesn't come with any guarantees, Mr Lewis" .That's a common thing I hear. I know that only too well, but I still have to make a decision about what to do next. It is like a game of chess, that I play in my brain. Just when I think I have got myself into a winning position, the opposition seem to pull out an unexpected move. Have I done the right thing, so many questions going round and round.

Coming away from the disease angle for a bit, and even social arrangements can be quite tricky at times. People want to support you, and maybe go out to dinner etc. But you are feeling tired, you are on a regime of drugs etc and therefore you have to make special arrangements, and there are times when you feel that you are the odd one out. You are being a pain, by wanting to leave early.

Even things like holidays are very difficult. Even if you are well enough to take one, there are all the issues, around holiday insurance, before you even start. Then, do you have the energy to do the things that everyone else would like to do?
Can you go to a warm place, sit in the sun, have a few drinks or go to night clubs? If you are lucky, maybe one or two from that list.

Work can be another problem area. If you are lucky enough to be able to continue your work, after illness, do things feel the same. Do your colleagues react to you in the same way they did? Are you able to still manage the same job you did? Just some of the issues you may have found if returning to work.

What about if you have been sick longer term, and have lost your original job? How will prospective employers view your illness? Where will your application form and CV sit in the queue for a new job? We all know what the law says, but what are the facts? I know very, very few people who have had long term illness and managed to find their way back into meaningful employment.

It starts to feel that you are the only one that has all these issues. In most cases, everyone is very supportive, and understands things to a degree, but It can feel like you are the odd one out. All your friends are working and having fun, living what might be classed a normal life, and there you are thinking about every small step of every day.

One common side effect of all this, can be sleep issues, A lot of my fellow patients struggle in this side of their life, and it can work two ways. Either, you are so exhausted in the day, that you are constantly tired and fall asleep quickly. Or like me, your mind can be so active during the day, that it struggles to shut down at night. Unfortunately, to ensure that I am able to sleep, I have to have sleeping tablets. Before this, I was awake continuously, night after night. My mind found it impossible to close down of it's own free will. This was an issue, not only mentally but physically too, as your body repairs itself while you sleep. Therefore if you are not sleeping correctly, you physical improvement will be a lot slower.

Hopefully I have been able to get across, some of the ways that people affected by cancer can suffer from loneliness, even though they appear to be surrounded by people.

If you are unfortunate enough to suffer with a long term illness you will be aware of many of the things that I have mentioned above. In fact you might have experienced other things, which I haven't mentioned, and that you would like to pass on to other readers. Please feel free to add your own experience in the comments column, as we can all learn from each other.