I think this blog is reaching the point at which no news should be assumed to mean good news. The treatment to hold back my incurable brain tumour has been completed and we are now in "wait and see" mode. I think we would all get bored of daily or weekly updates just to say "hello, I'm still here."
My weight, which has caused me some consternation as it topped 100kg, is now down to 94.4kg and decreasing at a rate of a couple of hundred grams a day (sorry, I gave up pounds and stones several years ago.) To what extent this is due to the diuretic tablets proscribed by our GP, or giving up cakes and desserts I don't know. but while it continues to work I'm sticking at it. Moving around is now a lot more comfortable and I can once again see the bones in my feet.
I still have to overcome one problem which has plagued me ever since the treatment started and that is my loss of balance and the vertiginous feeling when I have to descend stairs. Our GP warned that there may not be anything that can be done about that. I hope it will just wear off. Until it does I won't feel confident enough to leave behind my walking stick or go out without Olga's reassuring presence.
Olga and I have been discussing what improvements we can make to our home to make things easier for me when my mobility becomes limited (as it almost certainly will judging by the experiences of other brain tumour victims.) We had a meeting with a lady from Social Services who told us they can fit a rail on the opposite side of the stairs of the stairs so I can descend hanging on with both hands, which will help with my vertigo. They also offer such things as raised toilet seats to make it easier to get off the pot, and can loan us a lift to help getting in and out of the bath. That would prevent potentially embarrassing incidents such as occurred a month ago when I couldn't get out of the bath.
That's all for now and hopefully for a while or at least until I experience major improvements in my fitness.
I for one would not mind weekly (or even daily, if you're so inclined) updates of the "I'm still here and making it". I have never faced a personal health crisis and have always wondered how I would react. Reading your story and seeing your determination to see it through will hopefully provide me inspiration to do the same if/when I am faced with similar challenges.
ReplyDeleteThat said, I also keep up with your ham radio blog, so postings there will provide the re-assurances that all is still well with you and Olga.
May your balance, weight (that's another one I need the inspiration to work on), and overall condition continue to improve over time. I'm looking forward to seeing a WOTA activation or two over the next year or more!
Lynn (D) - KJ4ERJ
Thanks, Lynn.
ReplyDeleteI look forward to activating another WOTA summit some time as well. I have all the necessary hardware - the problem is the software. :)
I've been reading your blog since your diagnosis. Thanks very much for making the effort and I am certainly happy for your progress. I'm not sure I would have the energy or courage if it ever happened to me. Plus, the cost of health care here in the States is ruinous which would also weigh heavily in any decision to "fight".
ReplyDeleteLike many, I read this blog and take hope and encouragement from it. The eventual outcome may be predicted (some time off we all hope) but you have certainly shown that with a positive attitude and personal research into drugs that can also help, you have kept the beast on the run.
ReplyDeleteLike many, I read this blog and take hope and encouragement from it. The eventual outcome may be predicted (some time off we all hope) but you have certainly shown that with a positive attitude and personal research into drugs that can also help, you have kept the beast on the run.
ReplyDeleteGood luck with it all, Julian. It's a bit hard to know how much to go banging on about stuff online and when you're over-egging the pudding (I'm going through my own nonsense at the moment, which has just splatted most of my sight but promises to leave the rest of me bumbling around for the foreseeable). But I'm sure you can assume that everyone here will appreciate regular helpings of pudding, here or on the shack blog, much more than a long period QRT!
ReplyDeleteKeep on keepin' on...
Rupert, G6HVY
(PS - Adrian M6TUT, who lives about a mile away, and I have just bought some Arrow sat yagis which we also plan to use in a back-packery way. Yay, Disabled Railcard! Who knows - I may yet have a QSO with you!)
Good luck with it all, Julian. It's a bit hard to know how much to go banging on about stuff online and when you're over-egging the pudding (I'm going through my own nonsense at the moment, which has just splatted most of my sight but promises to leave the rest of me bumbling around for the foreseeable). But I'm sure you can assume that everyone here will appreciate regular helpings of pudding, here or on the shack blog, much more than a long period QRT!
ReplyDeleteKeep on keepin' on...
Rupert, G6HVY
(PS - Adrian M6TUT, who lives about a mile away, and I have just bought some Arrow sat yagis which we also plan to use in a back-packery way. Yay, Disabled Railcard! Who knows - I may yet have a QSO with you!)
Hi Julian, just saying hello really and to thank you for calling at the weekend. I am going to start Susan reading the blog in manageable lumps. The positive attitude you show I'm sure will help in tough times. Cheers, Andy
ReplyDeleteThanks Julian for your time and effort in writing this blog. I think everyone who has read it will have taken something very positive from it which can be used in their own lives. Good luck to both you and Olga, may your health continue to improve.
ReplyDelete73's
andy
Hi Julian,
ReplyDeleteCheering for you from the Tropics! It's hard to believe a year has gone by so quickly since you first reported the symptoms of the tumor. You've got it on the run, clearly, and you have our best wishes for a full recovery. Now, we have our own health problem to deal with, which you may have read about in my non-ham blog, but we are quite optimistic about the outcome and grateful to be in a place where we can get good quality, affordable care. Carry on OM, and keep us posted!
73, Casey
Many thanks, Casey. All the best to you and Tamara.
ReplyDelete73, Julian
Long time no hear Julian. Busy working the DX?
ReplyDelete73s
Roger G3XBM
No, Roger. Busy watching the Olympics!
ReplyDelete73, Julian