Always grateful, but still feeling guilty!

Winter can be a difficult time, even for those in reasonable health, but for me, it is becoming my personal nemesis, and I look forward to it less each year! Here in London, the weather has been kind this year, and even though we are now into December, the temperatures are only just getting quite cold. It is no coincidence, that my health has been in reasonable shape, during the lovely summer we have enjoyed.However this week has woken me up with a large dose of reality! 

You would have thought that after 6 years of similar cycles, I might have learnt, but no! Far be it from me to disappoint. I am like the baby who continually puts his fingers in the electric socket, to find that it hurts, every time. As soon as I feel well for a few weeks, I think that my problems have all gone, never to return. Despite all the warnings, I continue like nothing has happened, until my body says no more. Which it has done this week.

A combination of cold weather and bugs everywhere, took me down quickly.Which has left me with little energy or appetite, and even unable to partake in my usual Twitter conversations. But it did give me a lot of thinking time. My initial emotion, was frustration. That my life has yet again, been interrupted by my health issues. Stopping me doing the things I love, and progressing my work in cancer support, hopefully only temporarily, though.However, I then thought, that actually, I should not be complaining at all! I have life, where it wasn't expected. I should be grateful, I am and always will be, of course, but sometimes forget! But guilt is the most difficult emotion for me to live with.

Independence, is probably one of the most important things in our lives. But like a lot of people diagnosed with cancer, mine went,along with a lot of other things. I have become dependent on medication, the skill of my clinical team, but more importantly on my family and friends. Sure, everyone says it's a pleasure, of course, but looking after someone as obstinate as me, could not be described as that, I am sure! 

Not only is it my life that is affected. Unfortunately, I have dragged other people into my world too. You see, this is the almost hidden affect of cancer on us. Not only does it affect the person who is diagnosed, it changes the lives of others too. In my own instance, My wife and I had decided to some travelling when we retired.Getting to hospital frequently, is now almost the limit of my travelling! 

All our hopes and dreams, have been put on hold. Our financial plans for our boys, have also had to be adjusted, to fit with my situation. I struggle to do any physical work around the house, and my boys have to do most 'man tasks.' Even driving long distances is difficult, as I find I lose concentration quickly. This week I have been unable to enjoy my wife's birthday celebrations, as I have been unwell. We are due to go away for the w/end with friends and am hoping I will be up to it by then.

It's very difficult to plan things as a couple, now. My wife is at the stage in her life, where she should be out travelling in the sun, and enjoying herself. Not picking up the pieces after me, when I'm continually unwell.Making sure I'm taking my medication at the right time, and ensuring I get to the hospital when I should. Whether we like it or not, I need carers. That doesn't thrill me with joy, I can tell you!

I wanted to put this out there today, as from my talks with a lot of other patients, there are many of us that feel this way. Some people discuss it with their partners and others don't.I guess we all live with a feeling of guilt about something, some even feel guilty for being alive, while others are not! But at times, it is a heavy load to carry, along with everything else. Everyone says I shouldn't feel that way, but you know how hard it can be to ask for something once. Just imagine that every day! 

For those of you affected by cancer, you may recognise some of the things I have written about today. I am also aware that I now have a very varied readership, and so if you have little knowledge of the impact of cancer in someone's life this may be surprising for you, but unfortunately it is real. 

What emotions do you go through daily? Are you affected by guilt like I am? Is there a way that you have found to deal with some of these issues. I do look forward to hearing from you. Please feel free to leave a comment below, or catch me on Twitter @christheeagle1 

Just a piece in the jigsaw of life

My treatment has started again in earnest this week. Unfortunately, my efforts to regain some of my life have not been successful, and after trying my treatment monthly, my graft v host disease is beginning to get a grip on my body again, and I must resume a more aggressive regime of fortnightly. I did start a self centred moan to my Consultant, who smiled. She said that I will HAVE to slow down now, and that the staff would be pleased to have my company more often!

There are certainly many down sides of being in the hospital so frequently, and the treatment is tiring, but unlike chemo, it is not toxic. I am still plugged into a machine for hours but am able to focus on my thoughts. So I try and take the positives where I can. It certainly does force me to rest, and now instead of constantly using my smart phone, I listen to music or take some thinking time. It is the thinking time that prompted this piece.

I have again, become a very regular part of the nurses lives. Alongside my personal life, my 'cancer life' is intertwined with so many people in so many organisations, both physical ,and on social media. There are very many threads, taking me in so many different directions. Yet it feels that in some crazy way, everything joins up eventually, like a very large circle.

 

My work takes me into some incredible peoples lives. Their stories are unique, but they become part of my life, and me theirs. I liken each life story to a jigsaw, we all have our own, in which we are a piece, but we also join up with other jigsaws, to form a larger one. As our connections grow, the picture starts enlarging, and changing.

Several weeks ago I was doing some work, and my experience was able to aid the process. The people involved were wonderful, and we have been able to help each other since. We are now very much part of each others lives, and stories. Now I am not only a piece in someone else's puzzle but my own picture is changing again.

When there are pieces missing from a jigsaw, you can never see the complete picture in all it's glory. If you consider certain groups that you know, family, friends, social, or work colleagues, when certain people are missing, it just isn't the same.

Time is a big issue for all of us, and as we get older, it becomes more difficult to find room in your life for new acquaintances. But I am finding that my list is still rapidly growing! Obviously we only have a maximum capacity, for relationship building. But as we accelerate through life, is the way that we deal with people changing? Social media means that we can maintain relationships in the way that we want. Not every person deserving of our valuable time in terms of personal attention!

My life has always revolved around meeting people. Some stay in the memory, and relationships form. Others come ,and quickly go. At different times, people come to the fore and then drop back again, as priorities change. At times the puzzle gets larger and other times it gets smaller.

 

I am always amazed that how through my illness, the relationships I am forming, feel very strong, and long lasting. Maybe it is just the phase that I am going through, but things feel very different now. Whenever I meet someone, I never feel that there is a hidden agenda. I still have my 'business awareness' which makes me cautious of peoples motives, but we only try to help each other. Maybe I am now a piece in an entirely different puzzle!

It seems that my life is swinging around so wildly, that I don't even know anymore, what the picture looks like. I feel that I am a 'universal piece' that can fit anywhere. Sometimes a corner, or whatever is required at the time. My life certainly feels like one big puzzle right now!

Are there times that you feel similarly? Please feel free to share your thoughts below

My humour gets me through!

For most of this winter, I faced my nemesis. Constant cold, damp weather.For a man with the poor immune system that I have, I tremble when watching winter weather forecasts. I seem to stumble from cold to flu,to everlasting chest infection.Finally get rid of that, then the next one starts.Feeling under the weather (literally) for long periods takes it's toll on me, as I try to continue with parts of my life.

I am now towards the 6th anniversary of my diagnosis, and when reviewing the things I faced, there are times that I honestly don't know how I have the strength to continue. I thought of something that immediately made me smile, and then I realised. Only my humour could have got me this far.

This post was written about a year ago, but I realised it is as appropriate now, as it was then, and is still what helps me cope, so I would like to share it with you all today.

Humour plays a very big part in my personality, and always has done. I have always been able to see the funny side of most situations, even if sometimes there doesn't appear to be one! In my life before cancer, it certainly helped me with my work, as everyone remembered me as 'that funny guy' and in a very competitive industry, it seemed to give me an edge.

When I started coming to hospital, I was aware that things were going to be very different to what they had been, in many ways! I was spending a lot of time in waiting rooms, doctors offices, and the chemo ward.How was this going to affect my personality? Was I going to lose my sense of humour and get depressed?

Ironically, that was one of my biggest concerns, not so much my schedule of treatment! What is there to smile about in a room full of people who are very unwell, having very toxic treatment? I approached my first chemo session very quietly and cautiously, after all I was the new boy in town! My idea, was to watch and learn how other patients were dealing with things. It was relatively quiet, some people reading, listening to music, or quietly chatting with friends. Others just sitting there on their own in quiet contemplation.

My bags of chemo were ready, now just the cannulation! Ah, my veins are difficult, here we go! It took two or three nurses to try and cannulate me, with my arm being put in hot water, cold water and eventually sister taking over and finally succeeding. What I hadn't noticed was that people were quietly watching how the new boy was getting on.Slowly people were talking about how they couldn't watch as the nurses tried to find my veins. Very quickly my old self returned and I was laughing and joking for the rest of the afternoon!

At the end of the session, a lady approached me, who's husband was having treatment at the other end of the room. She asked me what chemo rota I was on. I said I was every two weeks, why? (I thought I may have been too loud for her husband, as he was a very quiet man) She told me that her husband was also having treatment for the first time, and he was frightened. But he had laughed so much during the afternoon, he had almost forgotten about his treatment! He then wanted to be on the same rota as me.The nurses also mentioned to me that they enjoyed the sessions when I came, as there was generally a lighter mood.

I will never forget Terry, who was an ex serviceman, who had Myeloma. We met as inpatients. We both complained about our food, and although we were in the same ward, we were in isolation units so we used to ring each other and discuss our days. He would always tell me a joke or two. We always met in the same clinics and the staff dreaded it as we never stopped laughing. Unfortunately, Terry's situation got worse and he was very soon in a wheel chair, but we made a point of meeting and sharing a joke or two. I used to joke with him about having to slow down, as he had his chair.

Unfortunately Terry passed away, and his wife asked me to come to his service of celebration. Everyone had to wear bright colours to reflect his personality. After the service, his wife thanked me for coming and she told me of one of the last things that Terry had mentioned. He talked about how ill he was, and as he was a religious guy, he talked about going to Heaven. He then told his wife, that in the nicest way, he hoped it wouldn't be too long before I joined him there so that we could continue our fun!!

That is when I truly understood the power of humour in a cancer environment.I do appreciate that it is not for everyone, and not for every occasion, and I am always very aware of people I don't know, in case it is not for them, but sometimes some serious things might just seem not quite so bad, with a little added humour.

I know that sometimes it is difficult to find a smile at times, even I struggle on certain days, but I have found that humour is what gets me through. It has been my defence for tricky situations and has always served me well.It is not rehearsed or learned, some of us have it, and some don't, but don't we look at life differently if we are laughing?

I have just found this piece on the web: Interesting!!

Research Supporting Laughter Therapy

A growing body of research supports the theory that laughter may have therapeutic value.
For years, the use of humor has been used in medicine. Surgeons used humor to distract patients from pain as early as the 13th century. Later, in the 20th century, came the scientific study of the effect of humor on physical wellness. Many credit this to Norman Cousins. After years of prolonged pain from a serious illness, Cousins claims to have cured himself with a self-invented regimen of laughter and vitamins. In his 1979 book Anatomy of an Illness, Cousins describes how watching comedic movies helped him recover.
Over the years, researchers have conducted studies to explore the impact of laughter on health. After evaluating participants before and after a humorous event (i.e., a comedy video), studies have revealed that episodes of laughter helped to reduce pain, decrease stress-related hormones and boost the immune system in participants.
Today more than ever before, people are turning to humor for therapy and healing. Medical journals have acknowledged that laughter therapy can help improve quality of life for patients with chronic illnesses. Many hospitals now offer laughter therapy programs as a complementary treatment to illness


Do you agree? Do you use humour in a similar way? What helps you cope? It would be great to hear from you.