Hi Jane,
I missed your previous post re comfortable stuff, and although you suggest it should be in gormless shopping, I’m afraid it certainly does not qualify for that, quite the reverse in fact.
I hope your pain has improved
Best wishes
Hi Jane,
Just wanted to drop into this thread and say hi… HI!
I read on Debs post about waiting to get into hopice for some pain management and just wanted to say again that I hope you soon get it undercontrol and that your new chemo starts to have an effect soon.
My pain is just under control but the other day I didn’t take my steriods and it was quiet scary to me how bad I was without them.
I now have quiet bad swelling in my arm as well…I some times feel I am copying you!
I hope you don’t loose your hair again.
Hope your weekends been bareable,
best wishes
Tess.X
Hi Jane
I haven’t been on here in a while but dropped in to see how old friends are doing. I’m really sorry to hear that you’ve been in pain and not able to get the quality of life you were aiming for. cancer really is the disease that just keeps on giving.
I hope that caelyx gives you some respite and that the side effects are minimal.
fingers crossed for you
Barbara
Thanks Tess and Barbara. Stop copying Tess…
I’m in the hospice right now which is an extarordinary experience providing lots of blog material.In 4 bed bay with much sicker people…find that scary and upsetting.Im just sitting around being watched swallowing tablets…pain still bad and I dont thinkthey have a clue what to do. Oh the myths about cancer…in the dark ages
Hope everyone else havingbetter day than me…
Jane xx
Hi Jane,
here’s hoping they get your pain under control and you can go home. I have spent the past 2 days in bed sleeping, groaning and internet shopping.
The joys of bc!
Love Debsxxx
Oh dear Jane, I thought the point of a hospice was to get some privacy while trying to help you, I have avoided going anywhere near the one I have been referred to thus far. One day, when I get some courage I will take them up on their repeated invites.
I hope your stay gives you some real control of the pain most importantly. I will have to check out your blog tonight.
Thinking of you.
Nikki
Hi Jane
Hope you get the support and drugs you need at the hospice to get rid of the vile pain, and that you can go home ASAP!
Marilyn x
I feel like I am at Fawlty Towers for the sick. Sadly can’t get into my blog as forgotten password.
So much food for thought about end of life care, whats apppropriate whats not. 4 of us in my bay…2 very ill, and 2 of us not so ill…but the bond we are developing is a tribute to womens strength.
Jane
Jane I hope this hospice stay helps…I will most definitely be catching up on your blog when you manage to post. Belinda…x
Hi Jane,
Sorry they hospice isn’t proving much help yet - I hope they do find something that does work on the pain.
Re the blog and forgotten password - will pm you with possible solution.
Dawn
Hi Jane,
just to say I am thinking of you and the others in your bay. Really do hope they have sorted out the pain.
Love Debsxxx
Hi Jane
Hope the hospice comes up with some suitable plan soon. Glad to hear though that you are forming a bond with the other women in your bay and hope that is helping to pass the time.
Also hope AD manages to help with the password problem - source of all solutions ???!
Lots of love Kay xx
Hi Jane
I hope that the Fawlty Towers’ hospice staff find a winning combination for you soon and that you can get some much-needed relief.
As you know I am a fan of The Man from the Marsden and am glad that he has suggested a treatment that may give you some respite from your symptoms. I spotted a Caelyx brochure at the clinic today which I could post to you (assuming that you haven’t got it already - A5 4 pages). Briefly, it is a four weekly infusion lasting 1-2 hours, depending on the dose. Apart from the usual side effect suspects (short-term nausea for 40% of patients)the other possible side effects appear to be skin conditions. The good news is that only 20% of patients experience hair loss. It is manufactured by Schering-Plough.
I’m not totally up to speed with what’s been happening whilst I’ve been away, so am not sure if you were starting treatment today or if I misread that, but nevertheless I wish you the best of luck & a good result.
love
xxx
That’s interesting Ripley. Does that mean that Caelyx is available on the NHS? Can my medical team add it to their toolbox (which I fear they may have to dip into again quite soon).
Jane - hope you get to feel better soon.
Deirdre
Hi Deirdre, hope you’re doing ok (haven’t had a chance to catch up on your thread(s)as am only just back from hols). The leaflet was lying around in the NHS MDU so perhaps it is available on the NHS. There’s no harm asking whether it can be added to your toolbox. As someone else mentioned earlier, it is commonly used for ovarian cancer and has been in medical use for 5 years.
Jane, hope you are ok.
xxx
Yes back home ripley.
I don’t know why man at Marsden thought caelyx might not be iunded by my insurers cause in the end not too much trouble with AXA PPP Would be good to know about NHS. Yes I think I’ve got that leaflet. I really hope not to lose hair but I did on gem/carbo which is one where hair loss supposedly ‘rare’
Have a red face and indigestion…
Jane
Usually by Day 4 on any chemotherapy (except xeloda) I have felt like a wet, fatigued miserable rag.
But now it is Day 4 on caelyx and I’m feeling OK…was tired last night but ‘ordinary’ tired, not knock your head off fatigue.
Fingers crossed…and of course I keep feeling lumps and wondering if smaller or softer…bit early days!
So is caelyx the new drug of choice?
Jane
That sounds like good news to me. I am sure they will begin to shrink as well. Now that would be brilliant news fingers crossed.
Love Debsxxx
(an exhausted wet sleepy miserable rag)
Hi Debs
20% chance of shrinkage…fingers crossed…no surety! So sorry you are feeling wet and miserable.
Jane xx
I am keeping my fingers crossed that it works for you Jane, you deserve a b**** break from all this!
Nikki