A positive couple of days!

Well one good thing is that Monday has come and gone. The bad travelling to and from the hospital is done, and most importantly, so is the treatment! My treatment has been changed from Fri/Sat to Mon/Tues as we always seemed to have a problem on Saturday. As I may have expained before, my veins are poor, meaning that they are very narrow because of the chemicals that have been put through them in the last few years.

The treatment that I am currently having, means that they have to find a good vein to connect me to. It seems like I only have one left that is convenient and therefore each time the same one is used. This has caused problems in the past and has meant that both I and the staff have struggled, as several fruitless stabs are attempted before treatment is delayed.

It seems that a change of days is the answer, and things have been very smooth in this session. I always find my time spent on the machine, quite useful as it gives me an opportunity to discuss things with other patients and to learn more about other issues. I am always interested in the diversity of people coming for treatment. It seems that I am very lucky in terms of where I live as I think that there are only 3 hospitals in the country with these machines, and suitably trained staff.People seem to come from all over the South of England, even as far down as Exeter. So despite my moaning and groaning I am very lucky, and I must try not to forget that.

 

Although St Georges is my second home, I now have a third one!! (St Thomas's). The staff have been fantastic. They slotted me into their system very quickly, and I have got to know the team well now.Not really sure if they knew what to make of me when I first arrived, but since we did a bit of filming the girls are on board.

I would like to thank Bev for coming in to visit me today. Despite being there for her own issues, she took time out to bring me a sandwich and we had a great family catch up. Wish you better soon darling xx

I can honestly say that I am very tired now and my red cell count is dropping again, so they will keep an eye on that when I next go back. But tomorrow is my volunteering day, and a day where I am sure I will be involved with more lovely people.

I know I have mentioned it previously, but I am so lucky, meeting so many wonderful people, patients, health professionals and staff of the various organisations I am involved with.To be able to put a smile on someones face is an incredible feeling.

Bring on tomorrow!!!!!

Routine in my life. (Not my choice!)

Since my early days of work, I very quickly discovered that I was not a person who enjoyed routine. Apart from the fact that I had to go to work every day, that was as much routine as I required! That is why, after a few years of working for large organisations I decide the time was right to spread my wings and work for myself.

After nearly 30 years of life where I never new what the next day would bring, I am now enduring a life of fairly strict regime where I go from one appointment to the next and one round of treatment to the next. I mention this as I start my next round of photopheresis at St Thomas's today. To have the desired effect this has to take place on two consecutive days, every fortnight and my current programme is scheduled till August.

We have just had a fun w/end with an overload on sport, and a lovely lunch with family and friends. How lucky am I? I can't help asking myself why I am complaining!!

I have been really busy since the makeover show, trying to get rid of all of our unwanted stuff.I spent the last few weeks communicating with people about the show. Will be interesting once it is shown!  There is a charity event on the 26th March which I am organising, and a talk I will be doing in a couple of weeks. Plus of course Roz and I, working on the blog

So it is not as if I haven't got plenty to do, which is fun. It is just that when I got up this morning I realised that my life really was still routine, as I was back to hospital today!

I am now in the situation where I only accept projects that I am interested in and where I feel I can make a difference, but still I do not feel satisfied. If I put the lack of income aside, most people would like to be in my position. Go out for the day, meet friends, read a book or listen to music.

In the cold light of day, I should be really grateful for what I have. My prognosis was poor and certainly, if asked at the time, it would have been my ambition to get to where I am today. Enjoying times with friends and family, and less trips to hospital as an inpatient. Seeing my children get older and enjoy their lives and be there for them for any advice they need.

I often ask in my head will I ever be able to live a hospital free life?? Everyone is very positive as they would be, but my doubts linger on. I am now into my fifth year of almost continual treatment and I have got to the stage where it is difficult to remember my life with out the hospital. Ironic really, as I was never an inpatient till I had reached 50!!

I think the above is a MONDAY MORNING post!! But it is how I feel and this is what this blog is about.

How are you feeling today????  

Volunteering, what a privilege

Having been forced to give up the daily slog into London, it comes as a shock to the system when I have to do it. Especially as it is part of my volunteering process.But my goodness there is such a fantastic payback by the end of the day! I have had a lot of conversations regarding volunteering recently, and I can only say to anyone who is considering it, Just Do It!!

On most Wednesdays, I meet a lot of volunteers at different stages of their journey. Some starting out, and others seeking a change of direction. Some are university graduates, others are older people looking to continue using their skills whilst looking for work.Each one with their own motivation. A lot of people get involved, because they or their friends/family have been touched by cancer, others don't have any connection at all.

The greatest thing for me about the work I do is that I can see what a difference I can make to peoples lives. Sometimes the thing that people crave most is a listening ear, not an automated email response.I have seen people who have come in, totally lacking self confidence, and within a few weeks they are a different person.






 



With both my business skills and cancer experience, I guess I am in a slightly unique position, and can understand most peoples motivation for volunteering. I seem to be getting more busy as the weeks go by and am speaking to more and more people up and down the country, who want to get involved. all with different skills to offer.I hear so many touching stories and I feel extremely privileged that people want to share their experiences with me.

There are times when there are just not enough suitable roles around, or in the right location, to suit the people who want to volunteer. Sometimes their requests are very specific and we are unable to find a role at that time. A lot of people struggle to understand that if they want to give their time for nothing, that there is not a role for them. People forget that volunteers need training and managing which takes time and money. If it is not done professionally, neither the volunteer or the organisation will have a positive experience.

I was very moved yesterday, by a young person I had the pleasure to meet, and am never failed to be amazed at the special people that are out there.Such determination to overcome adversity. Just incredible!!

For the above reasons, and the wonderful people I work with, wherever I am, thank you for encouraging me and helping me do what I do.

Feel free to join the community and let me know, what motivates you???

Just like old friends!

Where does the time go? Another 3 weeks have gone past and another review has come and gone. Sitting in the tatty, cramped waiting room that I have come to know so well. Peoples faces have various signs of emotion on them.I can only imagine what is going through their minds. Different people at different stages of their journey. Some yet to get their diagnosis, others dealing with theirs.

I have to say that it is not at all the peaceful environment that patients need to deal with their issues. Two large toilets that open out into the gaze of fellow patients does not help things. The room is very cramped, tatty and busy. There is no private area at all.It reminds me of Clapham Junction station. Busy and noisy. It is ok for me, as I have got used to this environment, but I do feel for other, less hardy people.

Having said the above, the staff are absolutely wonderful, considering they have to work in such an environment. All very welcoming, helpful and understanding. When I go anywhere in the hospital, I am treated like a long lost friend.I have been going there continuously now for 5 years, and I think they miss me when I don't go for a few weeks!! Even the pharmicist asks how I am, if I haven't been to pick up my regular supply of drugs. The girls in the blood dept, now there's another story!!

We have come to the conclusion that my new regime of treatment is beginning to show a slight improvement in things. Although I still struggle putting on shirts, jumpers and jackets etc. Poor Sue, yet another task she has to do for me! I also have an appointment in a couple of weeks with a muscle expert.

When I am at the hospital I try and arrange my meetings to make the most of my time, and yesterday I managed to see the girls who work in the St Georges charity office. We work very closely to promote the great work of the hospital.Lovely people to work with, as they treat everyone as an individual. They put the FUN into FUNdraising!!

From consultant appointment, to drugs, to blood to charity office and Macmillan Information centre it was a busy day. As you may be aware, visiting hospital is very physically and emotionally draining. I can feel the tiredness daily, but even slowing down, doesn't really solve the problem, as I get bored very quickly!! I am used to living with it but it can be very unpleasant at times as I get to the stage where even simple tasks are such an effort. Very difficult for people of normal health to understand, I think.

Recreation and relaxation

Its Monday morning and I am preparing myself for my latest appointment with my consultant @ St Georges. We meet every 2/3 weeks to discuss my progress. Unfortunately there are always problems. that is why the visits are so frequent. This time I have yet another cold coming and my inflamation markers are rising meaning I have something going on inside and they will have to do more tests!

Really enjoyed the w/end and it made me realise how important R+R is to people. I think we get so busy with work etc we forget that our body needs a break from it's routine. Even though I don't work, I have a routine, which more often than not involves hospital visits, which in themselves are tiring! Let alone if you put treatment into the equation.Not only do we need a break from the physical parts of our lives but just as importantly, the mental punishment that we are unknowingly enduring.

Personally I have only found two things that really take my mind off my situation. One I can't mention on the blog, but the second one is football! As you may or may not know, I am a Palace fan, and I have found over the years that when I go to football with my family and meet up with all the people who sit around us, our sole purpose is to be involved with the game. I have been going for more than 40 years and know a lot of people, in different jobs, from different backgrounds, but when we are there, our common ground is football. For the best part of 2 hours nothing else comes into my mind! Others who don't like football might also find it mind numbing in a different way!!




We also had dinner with 4 friends and it was so lovely to swap stories round the table. Everyone had a few drinks and a few laughs and we all came out of our real lives for a bit. I have found that my friends have been invaluable on this journey and I'm sure for some of them they have felt they have been with me every step of the way!!

I think I have established that relaxation doesn't mean just sleeping or sitting in the chair, although that is fine too, sometimes I have to, as my body feels that it is closing down! Relaxation for me is just doing something that takes my mind away from things that make me feel negative.

The picture attached shows Selhurst Park and some pretty girls, also a vital ingredient to my R+R !!

Wonderful People

Had an awful journey last night to my meeting. Arrived late, (Which i hate!!)  awful traffic, even at half term. Plenty of meaty subjects to discuss and we had most members in attendence, which made for a lively meeting.

At the end of the meeting I was presented with a hand made card, and a bottle of fiz, to celebrate being selected for the TV show.What a lovely suprise!! It is so lovely that most of the areas of my work will be represented on the show. This is a testimony to all the fantastic people that I work with. Without their help I couldn't do what I do. A fitting tribute and thank you all. It is a pleasure working with you!




That made me think! A lot of the people who are so important to me in my life now, I would never have met if I hadn't got sick. I feel that I am so lucky in many ways. I'm sure that some of you reading this will think I have gone mad. Maybe I have, but I feel that way. I can't remember life before these people.

Since my diagnosis I have inhabited a very different world to what I was used to. However, wherever I have been I have always been made to feel welcome. So many of the situations I encountered were alien to me, but I was always treated with kindness and compassion.I was extremely inexperienced wherever I was, but people always took time to help me.

Having worked for myself for so long, I feel that it took me a long time to adapt to being part of a team. There are still many times when I lack the patience, I feel I should have by now. But people have aways accepted me for who I am. For that I am extremely grateful, and helps drive me on. I am only pleased that I had developed skills in my life BC (before cancer!) that can be of use to people now.

Feeling Tired!

Yesterday, was a really busy day. Meetings interviews and many phone calls. All positive stuff and great to be able to help when able.

After a day like that I know that I have to take it easy, as my immune system will struggle and I can get sick very quickly. Also my blood treatment is taking it's toll and by the time I have recovered sufficient energy from my previous treament, I am back having my next one.

It is frustrating as my mind is so active but my body struggles to keep up. Still I have the experience to know when enough is enough. I am spending today at home,and later tonight I have a meeting at St Georges with my colleagues on the I.C.E group. We work with the management at the hospital to try and improve services for cancer patients.

My phone is very busy these days with calls from people that are looking for advice, so I am very aware of how much work is still to be done, particularly in the area of communication. This is quite ironic really, when we are in the age when we have the most amount of technical help that we have ever had. We are bombarded with information, via our phones, computer, tv, newspapers etc. How much can we digest? Do we just notice the people that make the most noise? Are we able to sift through the info to find exactly what we are looking for?

My personal view is that there is nothing more productive than talking to someone who understands what you want, rather than spending hours sifting through meaningless rubbish. Are we going to lose the art of personal face to face communication. What do you think???

First Night Nerves!!!

The time has come to officially launch my blog. It has been an extremely busy week for me, and has certainly had it's ups and downs!

The downs being my photopheresis treatment. I have this, for two days every two weeks, as part of my treatment for Graft v Host Disease which is affecting my muscles, and my ability to move properly. It involves being plugged into a machine for up to four hours. My blood is then treated under UV light and given back to me.




These days are very tiring, as they involve travelling into London, having the treatment, then travelling home. The same again the following day. Unfortunately like a lot of cancer patients I have poor veins and they can't seem to find any productive ones in my right arm so my left is used continously and sometimes closes up so I have to go back for a third day!

Still this treatment, along with a combination of other drugs is helping me live a reasonable quality of life.

My ups have been fantastic, as I have been filmed for a Channel 4 programme which is starting on March 5th, called ' You Deserve This House'. It is presented by the amazing Amanda Lamb.




I am involved with various organisations as a volunteer and I was nominated for a spa break and a house make over. This was all a surprise and had been coordinated by my wife. I have been busy since then, as word has spread.

Coming up this week I am @ Macmillan h/o, helping volunteers and have a meeting @St Georges, working with the hospital management to improve facilities for cancer patients.

With constant unreliable health, it is difficult to make regular plans, but wherever I go people understand my situation and we try and work round it.

Please feel free to share your story. This is a place where we can all work together and help each other. There is no need to feel isolated and afraid. Come and join Chris's Cancer Community, where we understand, and tell it as it is. Things can be difficult and I don't want to hide that. But there can also be some positives if you look.