Friday, June 29, 2012
My brother in law's most up to date blog (from last night). Ron has been battling Hodgkins Lymphoma for about 7 years now.
I have lightly edited names and place details. S is Ron's wife. The younger nieces and nephew are my children.
"Down but not out. Life at home..
I've been home for just under two weeks now. I had been sent home two weeks prior to that but it really was too soon and I ended up back on the ward for five days after about a week at home.
Was a shame really because I'd put on a little bit of weight that I soon lost once back on the ward.
Oh well here I am, relatively mobile, but I have to take everything very slowly. No jumping off the couch and heading to the bathroom/kitchen/office without thinking.
I have to stand up slowly to avoid getting dizzy and then walk slowly, resisting my natural urge to move quickly. I'm capable of short bursts of movement but my body soon complains after about ten seconds. No it's best to take it easy, put on the oxygen and avoid the breathless, totally puffed consequences. I look like I've just run 100M dash otherwise.
Since getting the news that the new drug had failed completely (other than fixing my itch) S and I have been in a bit of a funk. Every bit of news we have gotten lately has been bad. I've spotted S with the occasional tear and red eyes when she thinks I'm out of sight. I really feel for her.
I told her I believe she has it a lot harder than me, her pain will go on long after I make my departure.
In the last couple of weeks we have pretty much covered everything about where I currently stand and we have looked at all the possible paths. I've accepted my situation and have no fears of dying.
I'm happy with the way I've lived my life and have no regrets. What does annoy me is that I won't get to be a grumpy old man, sitting on the porch in the sun with S, enjoying a well earned old age.
I won't get to see my daughter walk down the isle or any grandchildren that may eventuate, I won't get to see my younger nieces and nephews grow up.
So I do feel a little cheated out of my old age, but I have no regrets looking back.
Sounds all very glum doesn't it! But it's not really. Billions of people in third world countries never make it to 51 let alone complain about it like it's a god given right.
On a more positive note..Yesterday S and I met with Dr D'S for an overview as to where I am at now and it was a very good discussion. The three of us were all reading from the same page and although none of it made for a great read there were a few positives to come from it.
Firstly he agreed that I should concentrate on getting well and putting on weight. Then in about eight weeks we would look at trying Gemcitabine chemotherapy.
I mentioned a drug, Bendamustine, that my sister in-law Rebecca had commented on and although it's not a drug generally used for Hodgkins Lymphoma, some doctors in the US have included it to be used concurrently with conventional chemo for HL. He said he would look into it. It's a drug that was developed in East Germany during the cold war and was totally ignored once the wall came down. Now thirty years later it's been "rediscovered" and found to be quite effective on some cancers.
I'm currently having platelet transfusions every second day and red cells every two weeks. My bone marrow appears to be shot. It's certainly got a reasonably high level of infiltration by the lymphoma.
That's a very bad thing. But A (doctor D'S) had no problem with me having transfusions for as long as it takes to be ready for further treatment. So basically it's just status quo and wait. We are getting a little frustrated at spending half our days hooked up in hospital though.
We have faced the fact that no matter what drugs I get from here, I'm not ever going to make it to old age. Our biggest fear is/was that I may not even make it to Christmas, certainly that would be the case if I have another infection like I have just had, or if the cancer suddenly becomes more active. I joked with S that if I don't live out the year I have to die on December 21st, the so-called Mayan end of the world. That I said would prove conclusively once and for all that the world does in deed revolve around me! I'd die a very happy and smug little man. ;)
Joking aside, What we have decided to do is once again re-focus on living life to it's fullest and ignoring the illness as much we can. We did this two and a half years ago when we decided we wouldn't wait for me to be well before building our new house and look how much that paid off!
We have had a fantastic two and a half years in our slice of paradise. The alternative would have been hum-drum in rented accommodation.
So it's onwards and upwards with our plan to spend quality time at our little cottage at F beach. I've sold my Evo race car (more on that later) and I have made plans to purchase my dream car, even if it's just to park it up and stare at it with a silly grin. Previously I'd decided not to buy because I felt I would be too sick to enjoy it.
I asked A (doctor D'S) if he was comfortable with me having cataract surgery to improve my quality of life My eyesight is so bad I can't confidently drive a car at night or watch TV at all without glasses. He agreed it was a good idea and said he would help out by scheduling platelets transfusion to fit in with the surgery.
So today I phoned around looking for an eye surgeon that could complete everything in eight weeks. I've done it but it took a few phone calls. I did enjoy telling the ones that said they couldn't even give me a consultation for months that I'd just have to spend my money elsewhere. :>
So if we are to focus on a positive outcome then the hope is for the palliative chemo to return me to a modest state of health for a period that may well be from 1-2 years. From there anything is possible.
Here's hoping I make it another seven years like I have done so far! (and another seven after that).
So the decision to sell the Evo race car wasn't too hard. As I've said earlier I had achieved all I set out to do and to continue racing when I can barely walk is just futile. There is nothing more I could have done in that car that would have improved on it's record. "Nothing left to prove" as some have said.
So to that end I listed it on Trademe last Saturday night and within 24hrs the auction had nearly one thousand views. On Sunday night I got a phone call from an unknown caller and chose to ignore it as I'd asked for calls during work hours regarding the car. I was however tempted to listen to the voice mail that the caller left and I was impressed by the way he came across. Certainly not a tyre kicker or boy-racer.
I returned the call and within a few minutes he had decided to hit "buy now" on the auction, the car "sight unseen". I was certainly selling the race car for a bargain in order to move it on quickly without hassle or the need to bargain and he leapt at the price knowing how much they cost to build otherwise.
The next day he came to visit, loved the car (who wouldn't!) and purchased all my spares and race tyres as well, making it a very tidy little sale for me and a huge bargain for him.
My plans are to now finish the Toyota AE86 as a classic Targa race car, I just hope there's enough time to get it finished and have some fun it it. It seems to be taking years to make progress.
Even if I never get to drive it again, once finished it will be worth a modest sum and S will be able to sell it easily.
I've been given the weekend off from blood transfusions, they are going to see if I can make three days without it, ..love being a guinea pig! So it's off to F Beach to pick up the keys from the agent's and unload some much needed furniture at the cottage.
Till next week ....Ron"