I've just spent 2 hours pounding round one of my standard cycle routes, trying to burn out of my mind all negative thoughts about Kay's current situation. This is tough because it means letting my fears out and confronting them, telling myself that each fear is unfounded for this or that reason. But one's mind can work pretty hard at pulling one down and my counter arguments are weakening. I find my mind thinking truly dreadful thoughts that I can't bring myself to mention here and my defenses against such thoughts are tired.
But cycling is very theraputic, although about half way round I was fighting myself so hard that I was hammering along at 34kmph with my heart rate running at +95% hr max. I could feel that given my current state this was not doing me much good so I slowed down. Less mentally intense, but less likely to burn me out. I arrived back home having partially cleared my mind, but not to the usual extent. Still, better than nothing.
I sat down in the kitchen to drink and eat something when the phone rang. Marion, in a tense voice (oh-oh), telling me that Kay wants to talk to me. Kay, crying, says: "Daddy, I think that I'm dying. I feel like my body is giving up."
I'd just spent the last 120 minutes trying to convince myself that this indeed is not the case. And I'd not been entirely successful. Now how to do a better job with Kay? And Marion?
Well, there's no substitute for honesty. I told Kay that the future is not certain and that we don't know how this will end. But that at the moment there's no reason to think that it won't end happily, no reason to think that she won't recover. I explained that this fight is in our heads and that's where these thoughts come from and that we have to try to be strong and to fight them. This is what we can contribute to the battle to get Kay healthy again. I told her that a week of the pain that she's had plus being locked up in the same room for seven weeks is enough to make even the strongest person miserable and to make them doubt that they can get well again. I said that Mummy & Daddy feel it too, that we are also very low. But that we all have to do our best and be strong and think positive thoughts.
Kay came around. She is indeed a fantastic child and she pulled herself together. I promised that we would continue to support her and offer our strength and love all we can. She said that she felt better, that she hadn't got so much pain from her bladder today. But she said that she's very tired and I told her that that will also contribute to her feelings.
I then had to do a similar job with Marion, who is terribly upset with the idea that Kay has been carrying these thoughts around in her head. I told Marion that she must try to find some mental equilibruim since Kay needs us to be strong. Marion too did her best to pull herself together.
Now, I guess that I just need another couple of hours on my bike...
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Hi Rob,
ReplyDeleteYes, try to keep strong, try to believe in Kay's healing. Though very difficult it is very important. When the word cancer falls aren't we all thinking of death? I think it passed Kay's mind earlier. I know Dirk did. Very emotional for a parent to hear it from their child. But they are very wise. It does them probably more good to talk about their doubts and anxieties then to keep them hidden inside. And so does it to us.
We do not now what the future brings. Seen the circumstances it is very difficult to believe in a happy end. Tired, pain, locked in a little room with just sick people around you etc.... it is not exactly the best situation to stay optimistic. But let's try to...
Ever supporting,
Viviane
One of the problems with this whole thing now that it has gone on so long is that one starts to feel lonely, sort of. Some of our friends have stopped following what is going on and many people assumed that after the transplant everything would return to normal. And indeed, there's so much shit going down here that it's become old news.
ReplyDeleteThanks so very much for your continuing support, Viviane. And Phil, Diane, Linda and everyone else who leaves comments here.
I know, people have their own lives which they have to live on and 7 weeks of for them the same ups and downs leaves them so less to say.
ReplyDeleteI've read recently that 6 till 8 weeks in hospital after a BMT is normal and then several months at home. Also the virus infections are very normal and that after 3 months the thread of rejection is over. So Kay is very close to it. The fact that she gains weight is positive. Now we just have to knock down those viruses. Perhaps this is the valley and she heading for the top!
Let's hope and go for it. Big hugh for Kay!
Viviane
Hi Rob,
ReplyDeleteWould you believe I only just realized you have a separate blog? I wish I could read Marion's too. Kay's blog and now yours have opened my eyes tremendously to what families go through, and having worked in a children's hospital, I'm embarrassed to admit that. Being able to read your day to day thoughts and feelings gives me such a different perspective than I ever had as a social worker, rushing through my caseload in the hospital. I think your blogs may ultimately be a gift to people who work with sick kids and their families. You are right, I think, that people expect The Transplant to be the end of the fight rather than the beginning.
Next week, I'm heading to the Mayo Clinic in Minnesota, hopefully to get an answer to neurological problems that have mystified my docs here in NC for the past two years. I'm anxious about it, and you can bet I am going to keep Kay in my heart and mind while I'm there. If that little girl can handle all that's been thrown her way, than this old lady can do it too. Thanks for sharing your thoughts so openly with the rest of the world.
Hi Diane,
ReplyDeleteA number of people have said something similar to me recently. I even heard that few of the staff read the blog every now and again. I'm starting to think that if I got the time it would be interesting to try to gather this stuff up into a structured website for parents of children with leukaemia/cancer. But I think that it would be a lot of work, would required more research and would probably be beyond my literary skills. Anyway, for now it's speculation, I have my hands full with Kay plus the business.
I wish you all the strength possible during your forthcoming examination. I've learnt (so far) that it's the uncertainty that's the worse thing. At least when the problem has a face one can do something and not just be the victim of something namelessly scary. And of course I wish you the best possible outcome.
A very good friend of mine had a scare recently. For a week or so there was the possibility that her son had lymphoma. She was very scared and started thinking past the next result and end ed up winding herself up rather. The result was negative, no lymphoma. So the scare was a red herring and she went through a week of hell based on uncertainty. Fortunately. But it's clear I think that it's very important to one's karma at least to take these things one step at a time. We try to do This and it's not easy but in our case it's the only way not to go mad or give up.
Great to hear from you. I've promised Marion that when we have the chance we'll use some of the 110,000 air miles I have and take a trip to our friends in Virginia. It would be nice to meet for dinner somewhere (and yes, I do realise how big the US is! But still...)
Take care,
Rob.
Thanks for your good wishes and understanding, Rob. You are so right about the uncertainty. I can hold it at bay until bedtime when it's hard to ignore the symptoms, then it all comes rushing at me. I will be glad to get answers, whatever they turn out to be. I'm happy your friend and her son received good news (no lymphoma) and I hope Kay's pain is easing up.
ReplyDeleteJohn and I are only a bit more than an hour from the Virginia border and we have two guest rooms, so come on down!
I'm still here though not as eloquent as the others. You'll not get rid of me that easily!
ReplyDeleteLesley x