“You don’t feel your usual peachy self”

That is how my sister-in-law described being on chemotherapy – not ill but not your usual peachy self. She had a different regime to me with weekly doses then a gap and then the same cycle again (more a Matterhorn than my Ben Nevis to use my earlier analogy). At one time there was just a pretty standard dose for all cancers but now it is fine-tuned to the cancer, where it’s at and to the patient. The dose is calculated on the individual’s surface area (estimated from height and weight)! Then in the background there may be concern about what is around the corner – will this cycle pan out the same as the last? I am now six days into my second cycle so my neutrophils will be dropping and I am heading in to my immunosuppressed period. So back into my shell for a few days. No sorting out the shed – in fact that is now sorted thanks to s.i.l. and b.i.l..

Over the past few days a comment and a question have been in the news: – “There’s a lot of it about!” and  “Who should I tell?”.

The comment “There’s a lot of it about!” was prompted by a survey by Prostate Cancer UK which said that British men are dangerously ignorant of the prostate gland, which is also the leading cause of cancer in men, with 40,000 diagnosed each year. And yet when I got my diagnosis I came out from talking to the Uro Oncology Clinical Nurse Specialist I found a friend whom I meet walking the dog waiting to go in next. He is a week ahead of me in the chemo cycle and we regularly share updates. I also take strength from knowing of a friend who was diagnosed over 15 years ago and is still going strong. This is only the tip of the iceberg – there are others as well but I will not list them now.   There may be a bit of once you hear of something (whether it is prostate cancer or Learning Disability) then you are more aware of every other mention.

The question “Who should I tell?” was prompted by Victoria Wood’s death when it was revealed that she had only told her children and even her brother didn’t know that she had cancer. I can understand why someone in the public eye would want to keep it quiet, but for us mere mortals it has to be a personal choice. For me the key questions were how would it impact on friends and family and would there be changes that I would need to make which would affect them. Once I knew that I was going to have chemotherapy there were two specific impacts – secondly the possibility that I would have even less hair than I have at the moment in which case it would be pretty obvious that something was up and firstly that there would be times when I would be dangerously vulnerable to infection.

So the decision was taken – rearrange our lives so that I didn’t put myself at risk of infection. Don’t take the grandchildren to school, don’t see our daughter on my immunity nadir weekends (and don’t go into her home or Day Centre) and step back from the committees I am on. So that immediately widened the circle who needed to be told.  There seemed to be no reason to be anything other than straightforward and explain why. I can understand that in different circumstances there may be reasons to be more circumspect, but not for us. However there are friends and relatives who have not been affected by the rearrangements to our lives and therefore I haven’t needed to tell.

Interestingly Dan in the USA has written a ‘letter to the newly diagnosed cancer patient’ in which he says “Recognize, however, that some people will find being around cancer too difficult and will withdraw. Let them go, for their sake and yours. Most will return once they’ve had time to process what’s happening.” I am sure that is true but it is not something that we have found, perhaps because I am nearly twenty years older than Dan more of our circle have already had friends or relatives who have been faced with one cancer or another. Obviously Dan’s letter has been written from his perspective (and in the USA healthcare environment) but as he says “Recognize that each case is unique, so take [other people’s] input with a grain of salt and realize you may not have the same result.” In other words listen, take support but go your own way.

Life changes. Life goes on. It’s spring. The bluebells are out.

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See the links below for the previous post – and the next one.

 

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2 thoughts on ““You don’t feel your usual peachy self”

  1. Some good points well-made Tim. Hope this session continues without the events of the last session but I suspect you know more now about what is likely to happen..and you’re right, the bluebells are out – go up to Whiteleaf opposite the Cross car park for some super photographic opportunities, take care, Peter

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  2. Hi Tim. Dan here. I’m sorry to hear that you’re also going down this road. I was surprised and humbled to see your comments about my own experience in this post.

    You’re correct in that the vast majority of people stood by me on my initial diagnosis, and I can recall only two people who really pulled away initially on hearing the news. Both had had a family member lost to cancer. I suspect it just hit too close to home for them, and they didn’t want to relive the experience. I understood and respected that.

    Now, I’m watching my PSA rise just a little more than five years out from my prostatectomy, and am struggling with who to tell and when. I haven’t hit the official “It’s back!” mark yet, but early indicators are that we’re moving in that direction. Having that support now during this period of uncertainty is as important as having it once things are confirmed.

    All the best to you and your family. —Dan

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