Posted by: cg00n | September 13, 2010

Rambling On

In another couple of days Dr. J will take the stitches out from the most recently removed pair of lumps.  After their removal we almost immediately found another suspicious lump but it was very small and has since more or less disappeared.  Just a simple pimple but it caused another round of anxiety and a strong desire to have a more definite game plan.  For this purpose we have been to see Dr. D, Dr. L and Dr. C recently and we have appointments pending with Dr. M and Dr. G for good measure.  The questions we really want answered are:

  1. how long should we wait once we’ve spotted something new?
  2. is there anything that can be done to slow the formation of these things?
  3. is there any sensible alternative to surgery by way of a treatment?

The answers are always going to be a bit fuzzy but we have a better idea now and things will probably become clearer with time.  So far what we have is as follows:

  1. A couple of weeks is probably reasonable unless the lump is growing like crazy.  This is also long enough for a pimple to sink back into obscurity and cease being a worry.  Some of the clinical trials for new chemo drugs require that the lesion be around a cubic centimeter in size which sounds positively petrifying but suggests that these things can get quite big before the doctors start to worry.  Basically we need to relax a bit.
  2. We will be asking Dr. G if another limb perfusion might help and if so what criteria he would use to determine when to try it.  This is a pretty big job and not lightly undertaken by any of the participants but it might help.  There is also the possibility of directly-injectable  chemo (like OncoVEX) which should be coming to a hospital near us RSN.  That’s about all the possibilities visible at this point but it sounds as though Ipilimumab might get rapid regulatory approval which would be another weapon in the arsenal should we ever need it.
  3. At present cutting the lumps out as soon as reasonably possible (ASARP) is still the preferred course of action.  In another year or two, who knows?

In addition to seeing all the doctors I was in touch with Mr. P.T, a fellow melanoma sufferer I met at the cancer clinic a year or so ago.  He continues to inspire me.  Now he has some kind of mass in his chest and a lump on a leg muscle that may defy surgery.  However, he appears to be in no pain and just gets on with his life, now seven years or so after his original diagnosis.

Coming to terms with all the uncertainty has been a major focus of my last two years and, give or take the occasional anxiety attack, things are certainly getting better on the state of mind front.  During my most recent little relapse I was aware of several things:

  • confidence that the anxiety would pass
  • a greater willingness to take drugs proactively
  • a diminished sense that the cancer is causing the anxiety

As a result, I suspect, the attack was milder and shorter-lived than many of those in the past.  Still, there is a lot of room for improvement and in a few weeks I expect to be enrolled in a 6 session once-a-week course on mindfulness approaches to dealing with anxiety and depression.  I am sort of looking forward to it, although these things are always very tiring.

In a more philosophical vein, a long-time friend Ms. M.F of California sent me an email with a link to the silence of the dying, a blog posting that I found quite interesting.  The blogger (Sara) feels passionately that, in our society, the dying have to keep quiet about their fears and anxieties in the face of unknown, but probably unpleasant, circumstances.  She feels that speaking out is a recipe for becoming ostracized by friends who simply cannot cope with the whole idea.  Ironically, she says:

… too often, it is up to the sick and the dying to comfort the well and the un-dying.

My friend (Ms. M.F) on the other hand feels as though she has been shut out by people who are terminally ill and compliments me for not doing this:

I really appreciate your sharing this journey with your friends, sharing research, ups&downs, family reactions, visits from friends, and suchlike. You’re sharing your life, your living, and we will be able to remember that about you. You’re “living your dash” well.

Thank you for that.  I certainly feel that being able to be forthright about my experience helps  to cope with it.  Having found value in various other blogs dealing with similar topics I also believe that it is just possible that my own words may help someone else.  Keeping it all inside may help some people cope with themselves but it doesn’t work for me.

Having said that, however, I do try to be positive or at least not wildly negative, not just in my writing of course but in my own outlook.  Moaning, complaining and feeling sorry for myself is not IMHO productive or even fun.  There are times it all bursts out of me and I may be miserable for days on end, but why would I want to stay in this state if I had any choice?  Again, IMHO, there is almost always a choice.  If the cancer doesn’t kill me something else will and it might be worse.  The process of dying might be horribly painful at times but lots of non-fatal things in life are too.  Death is fundamentally a time to sink into a permanent, dreamless sleep:  I won’t feel anything, think anything or miss anything.

Your social circle is bound to shrink if your interests drift apart and your ability to connect with others is impaired.  This happens to perfectly healthy old people and also to many who suffer some major trauma in their lives.  If you are consumed by thoughts of your own failing health and impending death the people you will have most in common with are other people in that situation.  This is why there are support groups and why many of us suddenly find organizations catering to spiritual interests (churches, mosques, meditation centers etc.) so helpful.  I think it is unreasonable to expect that friends will stick around unless you can meet them part way, maintain mutual interests and so on.  I can’t think of any former friends who have abandoned me because they can’t cope with my being sick.  It would not surprise me, however, if that were to happen if I spent all my time telling them how awful I feel or even if I were completely house bound.  In my view this is just normal human behaviour.  Indeed, if this article is right, avoiding thoughts of mortality may be wired into our brains.

In short, with all due respect, I’m not trying to be upbeat in order to comfort you lot.  I’m doing it for myself and I would encourage Sara to see things from this perspective.  I hereby raise a toast to all of us who expect to die:  may we find peace in the process.

News roundup

Let me also remind you of the Going Gently article which relates to what I was saying earlier.

Remember: we’re all in this together.  Nobody gets out alive.

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Responses

  1. You are providing a service to so many of us who do not share our feelings like you do-for fear of pushing friends away. When I had my first 2 surgeries for mm I watched my closest friend unable to cope because it made her think of her own mortality. But this made me a stronger person. This year I had a dear friend who had brain lymphoma-I made sure I comforted him and put my own feelings aside. This was all something I learned from the people who had surrounded me in my time of need. Before cancer I don’t think I would of been the kind of listener he needed, I was just present for him whether he wanted to talk or not. I lost him this year but am ever grateful what dealing with death has taught me the last 5 years. You sound like you are dealing better and your blog has transformed that way! (sorry so long-im rambling too) randi-las vegas

  2. Your blog has not only given me a better understanding of your journey, but also has taught me more about the human side of cancer treatments (versus the nurses side of it). I care about you, P and A … and support your efforts to find a better way (practically speaking) of responding to the small lumps that appear. Hoping more education will help you be able to gauge the seriousness. Also searching for a way to reduce the incidence of these lumps. I find problems easier to cope with if I’m taking a proactive stance.

  3. “Having found value in various other blogs dealing with similar topics I also believe that it is just possible that my own words may help someone else.”

    Enlgihtened self-interest–give it a hand!

    I am likewise open about my bipolar disorder, so that some random person can wander up to me and ask questions they might fear to ask another.

    I keep an ear out for stroke survival stories, too.

  4. I so appreciate your open communication and thoughtfulness about living through trials, dealing with the medical challenges and speculating on issues of existence. You are addressing our common humanity in the most intelligent and social way. I really admire your blogging. It keeps me close to you like the family we are. You and your parents are on my mind like background music. And now I have this jewel of a painting from P to remind me of her brilliant communication too. Just now I’m having it framed for added dignity. Right or wrong, I find it symbolic and powerful as well as lyrical. Thinking of A whose birthday is upon us again. my love to all of you – – -PS I’m reading and recommending Karen Armstrong’s book, “The Case for God”. She is a brilliant, English author whose “Charter for Compassion” has been promoted by the United Nations. She handles the big ideas very well. Check her U tubes to see and hear her. From the middle of the night, I’m off.


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