Week 45 – Sunday: Hanging On
It’s been 10 days since I have written on this blog. Hard to believe it’s that long because it seems like yesterday I last wrote and particularly because time is passing very slowly at the moment for me. Having gone from ‘slow’ to ‘slower’ – and from ‘reduced’ to ‘further reduced’, I feel like I have almost reached ‘standstill’ now.
On Monday last, all I had to do that day was go to the hospital for blood tests. And that’s all I did. Exhausted when I came home, I crawled onto the bed for a rest – put the TV on but felt too tired to watch, so only listened !!??!! I was feeling nauseous, weak, achy, exhausted - but not sleepy. Then I began having fantasies about eating a McDonald’s hamburger and chips. I thought ‘that’s it, now I’m losing my mind along with everything else’. I haven’t eaten red meat for about three years – and a McDonald’s for about 10 years or more. To add to this bizarreness, when I told Carol, she said she had just heard from Phil that he wasn’t coming home for dinner as planned – and she had a steak going spare. So I had steak and chips, sitting up in bed! Very odd for me, but I suspect the body needed it and was calling out for it.
Tuesday and Wednesday, I managed to meet my counselling and work commitments by doing little else all day. Resting on the bed every couple of hours or so before going out working. By Wednesday evening, however, I was running on ‘adrenalin only’ by the time I came home at 10:30 pm.
So on Thursday I faced up to it and gave in – acknowledging how slowed up I feel and that I need to take time off work. So I called in sick for Thursday and Friday. This means I have had 4 sick days in total over the past year. Not a bad annual sickness record for any employee, albeit I only work 3 days per week. But a really good record for anyone on the 48 week combo therapy throughout this period of time – and with a bout of Bell’s Palsy on top of that. So, while I ‘gave in’ to calling in sick, I also consider it an achievement to have managed to work so consistently.
Over the past few days I have done very little, sometimes just sitting in a ‘zombie-like’ state watching it go on around me, when I’m not retreating to my bed to rest feeling light-headed. We have had our cousin’s 17 year old daughter with us for a few days stopover between New Zealand and returning home to Spain. The energy generated by her and Phil together is great but exhausting to keep up with.
Mynurse telephoned on Tuesday to say my Neutrophils had improved, returning to 1.1 (the level they were previously). People have consistently observed that I look very pale recently, but politely not commented that I also am looking haggard and worn, which is how I know I look.
Today I am feeling I can begin to face the list of preparations to go away. Not only is there the packing and household to sort out – so everything is ready for the friends coming to stay while we are away, but there are the other jobs too (the car needs new brake pads, letters need to be written and phone calls to make, etc).
I have a real sense of ‘hanging on’ over this last few weeks of treatment – which is what everyone says about this phase. I haven’t really the energy to look forward to going away but I am hoping that our plans to be in the sunshine and on holiday in the last two and half weeks of treatment is going to prove to be a good one.
September 18th, 2005 at 8:59 pm
Hi Ron, I also work three days a week and I’m on my 12th week of 24. I find it exhuasting sometimes too-plus sorting out all lifes other little necessities. I think you have done brilliant to only have those few days off in 48 weeks, well done! Must admit there have been days when I haven’t felt like going but found it ok once I was there and got into it.
Hope the last phase of treatment goes well.
Teddy
September 18th, 2005 at 10:33 pm
Hi Ron
I’d just like to echo Alan’s comment that your strength is inspiring, and has inspired me and many others I’m sure during these last long months. I really respect the fact you’ve carried on with work as you have, I could never have done that. You have done so much to help others too, with the blog and the forum. 48 weeks is hellish, but you have managed to use the time constructively, and for that you should give yourself a huge pat on the back. If only we all could do that the world would be a better place! At last the end of treatment is in sight and I hope you can take it easy and get through the last few couple of weeks with the knowledge that you will certainly feel stronger and better physically quite soon now. So thanks from me, and have a good break
Maggie (week 33)
September 19th, 2005 at 8:45 am
Hello Ron,
It is really difficult to know what to say, you sound really pooped and that is understandable, are you sure that you are getting enough Danish pastries? To only take 4 days off sick while on combo treatment (and at your remarkable age) is an amazing achievement. I was going to suggest that with three weeks left could you not consider taking the rest of the time out from work, but then it is probably better for you to take a couple of weeks post treatment. I tell you coming off the drugs is a much better experience than letting them build up, so why not take time off work to enjoy that.
Good luck for that last push, I will be thinking of you.
Jonathan
September 20th, 2005 at 10:45 am
Hi Ron,
Couldn’t agree more that the last stretch seems to last forever, but that first day when you don’t have to have the injection is absolutely fantastic. Something to look forward to.
Very well done on the sickness record, certainly better than I managed.
Enjoy your holiday
Andy
September 20th, 2005 at 2:48 pm
Hi Ron
I’m so glad to hear you have made a decision about treatment duration - this must be a huge weight off your shoulders. Sorry you’re feeling so knackered - I also had a real downer towards the end of treatment and tried to think of it as a way for me to really really appreciate not being on the stuff anymore!
Just got back from Spain - weather nice and warm, but not too hot (heat is exhausting on treatment isn’t it?). Lots of really tiny mosquitoes (no-see’ems they call them in America) which are very hungry so worth getting repellent of some sort - if you find citronella essential oil works that might be good if you can stand the smell!
Hope you have a lovely time away, and that you can soak up some of the energy of the sun in Spain. Also, can recommend cafe manchada (weaker than con leche but really nice and smooth) combined with donuts! Have heard this is very good for the last weeks of treatment…
Take care and all the best for facing the end of your stretch with style and grace
Lu
September 20th, 2005 at 6:36 pm
Hi Teddy, Maggie, Jonathan, Andy & Lu
Many thanks to you all for your supportive and encouraging comments. Today I have mustered a little energy to become enthusiastic about going away - and am now looking forward to tomorrow as the big day. Sounds ridiculous but I think I need a break - if not a rest from all this.
Will no doubt post a blog from time to time over the next three weeks.
Ron
September 22nd, 2005 at 10:47 pm
Hi Ron
I am in awe of your sickness record, being now in my 8th week of absence from work, and after only 2 injections!
It is especially impressive that you manage to blog and run the forum as well, as Maggie has said. Respect.
I hope you have a refreshing and relaxing holiday.
Good wishes
Miss Poppy
September 23rd, 2005 at 7:10 pm
Hang on in there Brother, finishing line is just around the corner.
September 26th, 2005 at 10:09 am
Hi Ron,
Can only agree with everything else thats been said. Respect!! Working and continuing to do all the things you have throughout tx, is an amazing achievement!!
Hope you both enjoy your holiday. And good luck with the remainder of tx.
Hugs
xxx:)