Enduring shingles

Hello Denique, 

i am just about to start on the same drug combination as you listed above, however not been told how many sessions , all this is being discussed with me on monday .

Is there anything i could do to make it easier, or any questions i need to ask, if there such a thing ?

So glad to hear you are doing ok.

Kind Regards

Moox1

Hello denique, sorry you had such a bad dose of shingles. I had it last June, not as badly as you. There is a cream available on prescription which can help. Your GP would probably prescribe it over the phone. 

Good luck xx

Hello Moox,

I started a rather waffly reply to your post, but realised that what I really want to say is that you should ask any questions that are on your mind. And that, in my experience, there are no "general" experiences. I was on EC, and then Paclitaxel, for 6 months. The 3 months of EC, for me, was easy. A couple of low-energy days a week but otherwise no great problem. My adverse reaction to Paclitaxel was, I'm told, rare. And several people, both nurses and patients, have told me that most folk feel worse under the EC than under the taxol drugs. So there is no knowing. 

There is no denying that, as time goes on, some effects will be felt. We are being given drugs which kill many of our cells - especially the ones which are short-lived (hence hair loss and so on) - and some of the effects of that can be anything from slightly annoying to more serious. Looking back on it (which I more or less am) I think my main problem was that I live alone and that I had a bit too much of the "I'm alright" attitude. The quite rapid transition from fat bird to (relatively) skinny bird collapsing in car parks should have warned me earlier. 

Do take some advantage of help that is offered - whether from family, friends, Macmillan (which I didn't - some daft idea about "saving it up") - and especially the chemo nurses, who are a brilliant bunch. For me, personally, I also needed to understand what was happening. But we're all different. And, although I made the mistakes I mentioned (and am furiously cross that the chickenpox I had as a child took advantage of my weakened immune system and has left me with lingering effects of shingles) I'm the stronger for my experience. 

So, as I say, ask any questions which occur to you, read the literature - and don't be frightened about the chemotherapy, you're in the safest of hands. But yes, there's likely to be times when you feel a bit crap. But it's worth it, believe me!

Best wishes to you, Moox, and I'd love to hear more from you

Denique

Dear Seaspirit,

What an evocative name... Thank you for the advice - I did email my GP shortly after this and she has in fact prescribed the same tablets I was originally prescribed last year. They certainly worked in terms of reducing the problem to manageable. It's the fact that it's lasted so long (and that, spending so much more time digging in the garden, with the absence of work, I can often be seen doing gorilla-like claw-fisted actions while resisting the temptation to scratch). But things could be a lot worse...

Very best wishes xx 

Thank you Denique,

So glad to hear positive take on this and that there is light at the end of this journey, and that you are the other side now .

I also find it hard to ask for help so i will try , i have a daughter of 15 who is watching me like a hawk and i didn't want to take her childhood away but had no choice with the lockdown and my treatment which was the operation first and having to go into hospital on my own was hard for me as i am trying to stay strong for her and hubby( who is also being amazing ) and i feel i will let them down if i fall apart, and this is only the beginning !!!!!!!!

I am rambling now , but am worried for her mental health and hubby`s , so i am scared of the future treatments.

i would love to keep in touch

Stay safe and well x

Moox1

I must say, Moox, that I didn't have any family to worry about, so really only had to think of myself. And, of course, there wasn't the added difficulty of isolation and so on. But I'm sure that being able to share and help will save their sanity as well as yours. There are likely to be days when you don't want to get out of bed, or don't feel much like eating. I think it might be important for your daughter in particular to realise that you are not "going onto decline" because of the cancer but that such things are just a reaction to the cure. And will pass. You may even find that the chemo sessions are a welcome "social event" in these weird times - and all precautions are being taken (I was at the Marsden last week and noticed that the treatment chairs are further apart and all patients were asked to wear masks). Good luck tomorrow - I'm sure that once you've had your first session many of your fears will be allayed. And be gentle with yourself!