The Transplant club and life after treatment

Today was my first visit to the "transplant club", this is the clinic for blood sampling and transfusions and the coordinating nurse Liz gets all us post transplant folk together on Monday so we can get the necessary medical support, but also chat to each other about how we are feeling and what is working for us. This has been a great thing for me as I was able to chat to two women who were released a few days before me and they also are feeling sick all the time and run out of energy. Somehow knowing it is normal, and that eventually this too will pass, is a great help with mentally coping with being so weak and sick. My counts were a bit low but the team decided against any transplants as they want to keep a "hole" in the levels so that the body is stimulated to fill the hole and get the stem cells moving. The good news is that meant I was only in the hospital for a few hours rather than all day.

I did get some good advice from Liz, firstly try to keep the sickness meds on full strength rather than the half strength I had been coping with, and try to eat between meals to keep the stomach working on something. The purchase of a banana milk shake on the way out of the hospital did settle my stomach so that was a fine tip, her other tip was to cut out sleeping during the day and when I feel sleepy go for a walk instead, this again is generating a need for fitness to encourage the body to build it up. I must admit I was a bit sceptical about this latter advice but never the less, after a lunch of real fresh tomato and basil soup at the cafe across the road, I set off round the park in the very light rain. Three park benches and a lot of huffing and sweat later I got home, all in all about three quarters of hour of slow walking was completed. Now that I have cooled down and taken on board about a pint of fluids I do feel better, pleasantly tired but not sleepy.

Finally I have been surprised that I am not "happy" to have been released and do not yet feel like celebrating, I thought I was just daunted by the amount of distance I have to go to feel OK again, and pissed off at feeling sick. However I went to the Maggie's centre and got some great articles on how people feel when recovering from cancer, when treatment has left them temporary a shadow of their former self physically. I got a great article on how folk feel which has made me feel a lot better about my current position, and made me start to face the different elements of emotional recovery, you can read it at http://www.cctrust.org.uk/article3.htm if you have a relative or close friend in the same position of me it will help you make sense of the complex tides of emotion which they are dealing with. The always excellent www.cancerbackup.co.uk has a booklet and online section entitled "Adjusting to life after cancer treatment" which is also very clear and helpful.

In essence these good sources identify that once your treatment is "finished", you feel crap, your body does not work properly, you lose confidence in your heath, you worry that the cancer might not be cured, you are fatigued, scared and the support from heath care professionals and others falls off as you are "just resting until you feel fine again". In the meantime a lot of the emotions you were keeping in check to ensure you had your fighting head on during the treatment start to slip out around the edges, anger, fear, frustration being just a few. I personally find knowing this is happening and anticipating to some extent allows me to recognise and manage the fall out as I work through the phases, so this has been a great learning day for me.

I just need to remember not to tell the next person who next complements me on how I "look so well" to "F**k of as I feel crap, angry and frustrated", this would be perfectly understandable according to my booklet but probably would not go down so well in the real world.... A nice thought though. So my two top tips for the day for talking to folk dealing with cancer before and after treatment.

Before

DON'T say "you'll be fine you've got a great attitude" cause they might not be, you have no clue, this is just you making yourself feel better.

DO say something like "I hope/pray it goes as well as possible for you, can I help in any way?"

After

DON'T say "its great that your cured/well/ back to normal" cause they might not be, probably are feeling crap and scared, and then have to pretend to be happy and fine.

DO say "how do you feel" or "its great the treatment part is finished, hows the recovery going" then if they are fine they can say so and if they are feeling bad they can say so and if they want to lift a glass to second (or third) chances at life with you they can do so.

Of course all of this can be ignored in my case as I am going to tell you how I feel anyway in my new extrovert assertive and touchy feely mode !!

As one third of us will get cancer at any point these little tips may help you through it if you have not worked it out yourself already, I know I had not.

Cheers

Gerry