Sunday, 30 December 2012

How did I become a patient patient?

I have to admit that patience, was never a quality that I had in abundance. I have always been very impatient, and I guess that it is one of the characteristics that drove me on in my life, certainly in my career. Never waiting for things to just happen. Always looking to make the most of any opportunities that came my way.Trying to take control of my life and steer it in the direction that I wanted it to go.

Then I got my news! To me, not being well, was having a cold, or at the worst flu. Even then I would still go to work. As far as I was concerned, I had a plan, and a bit of illness wasn't going to upset it." How long will I be off work?" was my first question when given the news I was dying! Nothing had ever stopped me going to work, and I couldn't comprehend it at all. " You will be very sick for at least 6 months and it will take you at least 6 months to recover" was the answer.

Huh, they always tell you the worst scenario. I will be back to work within 6 months I thought privately.Well that 6 months turned into a year and a year turned into 5 years plus. During this time I have had to rely on a lot of other people to do things for me, to enable me to live something approaching a reasonable quality of life. My standard riposte of "don't worry I will do it on my own" got me nowhere, as I couldn't!

It took me a long time to realise that my impatience, was hindering my well being. I started to set deadlines for my recovery, and miserably failed to meet any of them. That made me upset with myself, and I became frustrated, thus making me feel worse.I finally realised that my life was no longer in my hands, and actually I couldn't really control much anymore. So many things were out of my control. I decided to 'freefall' meaning, 'what would be, would be.'

Even when volunteering, I have maintained my impatience, and always viewed things as if I was working. Constantly trying to be the best, and pushing to achieve more.But things are also very different to the cut and thrust of my old working life, in this sector. Everything feels more relaxed, and flexible. Timings are different, and priorities are constantly changing, so I have had to adjust here as well.

The intentions are good, but I am now used to things invariably taking longer than anticipated, or sometimes not actually happening at all. My experience in the sector, has made me a lot calmer. If things happen, all well and good, but if they don't, I am not surprised! I get used to being asked if I can do certain projects and then never hearing anything more about it.

Going for a hospital appointment is another area where my patience has been tested fully! I very soon realised, that the time of your appointment is rarely related to the time that you will actually be seen by the Consultant. There are of course many reason's for this, most, very valid, but it doesn't help your own plans. No matter how excited I get, it just isn't going to change anything and the doctors are always doing their best.Trips to the pharmacy, and blood testing, are similar situations. Everyone doing their best but the whole process takes a lot longer than anticipated.

My final impatience, was for some time in the sun. The years go past, and I always promise my wife, that it will be this year that I will be well enough to take a holiday. Well we have only managed one week away in 5 years, so again my impatience has turned to patience.

Getting better, going back to work, taking a holiday and living a normal life, were all things I was impatient to achieve. They are all still objectives but if they are meant to be, they will happen. If not, so be it! I am no longer angry when told that timings have changed, in fact, more surprised if they don't. I am trying to turn my angry energy into something positive.No longer am I eaten away by lack of achievement in whichever area of my life I look.

My biggest achievement in this period is staying alive, and I am happy with that!

Do you get frustrated with your illness, or any other aspect of your life? How do you deal with things? I would love to hear from you.

Friday, 21 December 2012

Stem cells and Santa!

Yes, it's that time of the year again! The season of goodwill to all men. Parties, presents, drinking,eating, and enjoying ourselves. That's what it's all about isn't it? For most people it is. They might also remember that it is a religious holiday too. But unfortunately, cancer doesn't take any time off, and continues it's relentless progress, celebration time or not.

I am experiencing at first hand, the pressure that patients can feel over the festive season. The difficulty of doctors and staff being away. Ensuring that you have enough medication to see you through the period.Worrying about what will happen if you do get sick, over this period. The hospital with far less staff than normal, if you do.

However, this time is a particularly poignant time for me. Five years ago, I was in my isolation unit, undergoing a stem cell transplant. The staff were unsure about starting it before Christmas, but I was in such poor condition that in the end there was no choice.My immune system was slowly poisoned over 10 days until it was like that of a new born child, then I was given my life saving transplant. A little bag of stem cells from my anonymous donor was sent across London on a motorbike.All organised by the Anthony Nolan Charity.

The gift of life for Christmas, how meaningful is that?? My goodness, how lucky am I? In honesty I am feeling quite emotional whilst writing this piece.Even with this transplant, no one was sure what extra life I would be given, if any. There was no guarantee that I would even survive the transplant.Yet here I am, 5 years later writing this.

I would like to share some of the more surreal moments of my festive season in 2007. Firstly, even though I was under heavy sedation, the Sister, (who was a very attractive young lady,) asked me what I wanted for Christmas. my quick reply was her, in a tiny Santa outfit! ( sorry ladies!) She played along and came in on Christmas day with her outfit on!

Secondly, at just past midnight on Christmas eve, all the patients got a little present from the hospital. What a lovely thought! Finally, on Christmas day, my family and friends all came in to visit me. It certainly was a unique way of celebrating.
So now, I am like the Queen and have two birthdays, my official one and my new life one. So although my bodywork is 56, my system is only 5.

Christmas is a family time, and although we all lead such busy lives, it is an opportunity, for people to spend some quality time with each other. For me, it is a period of reflection. I have so much to be thankful for, and I can celebrate that, amongst loved ones and friends.Since my illness I have had two grandchildren, and my boys are progressing in their lives. My spare time is taken up by doing lots of exciting things I never imagined I would be doing.

It has taken me a long time to realise, but we are not really in charge of our lives at all! Things happen frequently that change our lives but are totally out of our control.My choices are very restricted, but as I have mentioned in a previous post, things just happen! I could never have imagined seeing 5 Christmas's after being diagnosed with a stage 4 incurable Lymphoma.

So, as the festive time is upon us, and I watch people celebrating, who knows what is really going on in their lives. Is it just an opportunity to escape from some of our everyday issues? Who cares, they're enjoying themselves. In recent years, there have been more serious moments, and less lighter ones.I am leaving my baggage outside this Christmas, and will pick it up again, in the New Year. It won't forget who owns it, and I don't think anyone else will want it, so I know it will be still there, but a few days with family and friends will make it feel lighter, when we are reacquainted.

But the good work, continues. Some of my nurses and doctors are working over the holiday, and will be there if required, and my thanks goes out to them and their families for the sacrifices that they continue to make on our behalf. Also my thoughts are always with my fellow patients who are going through treatment with me.

I hope that the Christmas period treats you well, and maybe you would like to share some of your seasonal experiences? Feel free to leave a comment, as The Community is open 24/7 365!

Saturday, 15 December 2012

A full time job, without benefits!

 I seem to spend my time running from one hospital appointment to another, either for treatment or a review.If I add blood tests and pharmacy visits to the mix, I spend a good percentage of my life tied up in my health issues. My diary is a necessity, to check what time I have left, to fit in any other tasks that I may wish to do. That discipline continues, for my medication. My wife organises my daily tablet regime, which must be done at certain intervals, some with food, and some without.

This programme has continued to varying degrees, for the last five and a half years. Sometimes more full on, and others less so.I am now treated in two hospitals, so things have got a little more complicated, and travelling up to London twice a fortnight, requires a bit more planning than normal, and of course, more time.More often than not, appointments over run so you can end up waiting around, or rushing about.

I never have an appointment card, for two reasons. Firstly it would be the size of a 'Yellow Pages,' and secondly, my priority is always my appointments, which, although I have a poor memory generally,I cannot forget them! My view is that if my Consultant considers it important for me to come to hospital, then I must. After all, it is in my own best interests.

Whilst in hospital last week, some other patients were discussing how difficult things were, when trying to cope with their treatment schedule. As well as routine issues, there were things like special dietary requirements, also unscheduled visits for  radio or chemotherapy. Everything is difficult to cope with, if you remain fit, but if you get sick, then all the planning goes out the window and things have to be rescheduled.

My working background was management, so I haven't struggled too much with my treatment plan, but I can certainly understand when people do.It can be a very punishing schedule, for someone who's system is already compromised, at the start of the process! It really can be exhausting. Even sitting around waiting for tests, can be very tiring. You keep checking your appointment time, once the time has come and gone. Checking your number again and again, if you are in a queue for blood testing or collecting drugs. Everything seems to get slower as your time comes. 'How long have I been waiting here?' Plays over and over in your mind.

Of course, I have only mentioned the patient, in this process. There are carers that have to totally rearrange their lives to cope with the needs of their loved ones.In many respects being sick is like taking on an additional job. So many more responsibilities and meetings! Not too many fringe benefits though.

Naturally, if your health is not right, nothing else is important, but I have found that it is necessary to have distractions. That is why I get involved in all the projects etc that I do.Not only, is it a way of maintaining my business skills and maybe learning new ones, but they take my mind away from my own health issues, and give me a good balance.
Yes, I find it very difficult at times, to find the energy and enthusiasm, to get involved in things when I am in the middle of a treatment cycle, but I have always felt an overwhelming feeling of satisfaction once I have.

For me personally, my disease and consequential treatment, has meant that I am unable to work, but I do know many people that are attempting to hold down a job or studies, whilst having treatment etc. I am also aware of the issues that they are having, and I often wonder if the fact that they are still having to try and work, is possibly hampering their health.I fully appreciate the financial implications involved, but I am very aware of the stress that this puts on their recovery.

In summary, I feel that many people, including patients, employers and health professionals underestimate the extra stress that illness can bring. Very quickly, there is a lot of additional pressure added to very busy lives. I guess we just have to find our own ways of dealing with it, as I know from personal experience, I know best!

How do you deal with illness? Do you underestimate the added burden on your life?

Sunday, 9 December 2012

Making life changes can be tough, but beneficial!

Like most of us, when I was younger, I was encouraged to make a 'life route map.' This was a path that I was to follow, which would take me into a career, find me a wife, produce 2.4 children, buy me a house, and ease me into my retirement, where my golden pension would help me live happily ever after.

Well, either my planning was no good, or I was useless at map reading! I am currently 56, haven't worked for nearly 6 years, and am definitely not looking at a golden pension. My path started off quite well, and I fell into a career, but that is where it all started to go wrong. It wasn't the right one! It then felt like I had totally lost my way, no map, no compass and no road either.

But things started to happen for me and opportunities arose. It felt very strange. I was used to living the 'safe' life, and driving in the middle lane, but I was then forced to step outside my comfort zone, and start making decisions.'What if' started to creep into my thinking, and self doubt started dominating.

The stage had been reached where I could no longer sit on the fence, and choices had to be made.I changed career, and my life took off. I felt totally empowered, and started to enjoy, making big decisions. The bigger the better, bring it on! I thrived in a volatile business environment, with my newly found confidence, and things got better and better. Yes, I was taking some calculated risks, but I always had a plan B.

We all know that things can't last, and sure enough,nature intervened. This was another instance where my life had taken a direction, that most definitely was not in my plan." Mr Lewis, you are dying" didn't appear in my script anywhere, certainly not at the age of 50. It seemed like I had been relieved of decision making duties temporarily, and nature was going to take over.I was looking forward to a break, but not quite in that way!

Nature picked me up and bounced me around a bit, and left me blindfolded in a place I couldn't recognise. Where do I go from here? My health was poor, my confidence had gone, what did I have to offer? The decision making power had been taken away by nature, and I could barely choose what I wanted for lunch!

The one thing I could decide was that I needed help. That proved to be another life changing decision, although it didn't feel like it at the time! I was volunteering in Macmillan h/o doing data entry.Me, a 'captain of industry' only capable of basic office work! Can you imagine how that felt??

One thing led to another and with small steps, so many wonderful things have happened to me, leading to creating this blog. So many exciting things, that wouldn't have happened in my previous life.My confidence is returning, and with it, come the opportunities, thus the choice process, is required.

Now it feels entirely different.I am unable to work, so am not looking for a career. Just a way to use my time most effectively, and doing something I enjoy.I have no personal fear after this experience, which gives me the freedom to try new things. What is the worst that can happen if things don't work out? Exactly!

I really do appreciate, that living life in the way that I have, is not everyone's ideal. After all, that is what makes life so interesting.However I can say that since my illness, I was forced to adapt things in my life, that wouldn't necessarily have been my choice, and some exciting things came around because of it. Not all change is bad, and we evolve because of it. Sometimes it is by our choice and sometimes it isn't

Although I am at this point because of nature, I really have a feeling of 'freedom' about certain aspects in my life. Sometimes it can feel right to 'take a chance!'

The above post is a major milestone for me, it is in fact my 100th, since I started writing, back in February. I would like to take this opportunity of thanking all  my readers for your continued support. Thank you for sharing your thoughts and emotions, and also for sharing this blog with others.

This has helped us become an internationally known resource for people affected by cancer. Please continue to spread the word, as there are still plenty of people out there who don't know about us. Also feel free to join this blog, which can be done easily via Twitter. Your logo will appear, and you will get automatic updates.