Still have full body weals and continuing hives, bright red raw skin
Took last steroid today but finally got appointment in oncology clinic on Tuesday. Even though SHO tried to put me off over phone saying it will have gone by the time I go. Not if today is anything to go by. Now developed severe hot flushes, funny enough never suffered much with menopausal symptoms pre surgical menopause or after. Only started about three days ago. Ashamed to say ended up in local A&E with probable panic attack. Never had anything prior like this to starting Tamoxifen. I am wondering if this is something else. I only took 5 pills and have stopped 9 days. Admit it all only started after taking Tamoxifen. Couldn't stop crying yesterday and full of anxiety, paralysed with fear when was out. Got grip today better but not easy. Feel label of neurotic paranoid will be applied to me. Still feel poor help/support from City Hospital Nottingham and GP.
I'm sending out my best wishes and thoughts that the discomfort of the wealds and hives will diminish and tomorrow you'll be more comfortable - and more importantly that you feel better in yourself. There's absolutely no way you should be suffering all this on your own. I'm livid with your local health authority. How dare they trivialise how you're feeling. They're meant to be care professionals so they should CARE if you feel paralysed with fear. Your fear is very real so they should be taking this very seriously.
I shall be thinking of you and hoping you have a comfortable night tonight and can soon say the nightmare is behind you.
Loads of love and comforting hugs. xx Annie
Hi Northengirl,
Wishing you all the best for Tuesday and this is one time that I wish your symptoms would stay at least until Tuesday... it can be so frustrating if you haven't got anything to show them (which is often the case) so hang on in there at last you are seeing someone best wishes
Can't think how you haven't flipped before now- i'd have ripped the docs head off by now in your position! I don't post often but felt moved to post. I had a reaction to chemo, then more recently to an anti-rheumatic drug- just a few weals and itching with rash- it drove me mad- the sensation was like ants crawling under the skin, so you have my sympathy (my family thought I was gaga!).
In my case anti-histamines did nothing either and i just had to wait it out- about two weeks for everything to clear and to feel better. I hope yours goes quickly and make a complaint about the rubbish treatment- it might not help with the symptoms but will make you feel better- don't get mad get even!!! Take Care,
Polly
Hi Northerngirl
I'm really not surprised that you feel as you do with the (lack of) treatment that you've had to put up with! You should not have been put off whether the SHO thinks it will go or not. I think that part of their job is to provide reassurance! I really hope the rash and discomfort will clear up soon, then I am sure that you will also feel much better in yourself.
All I can say is I think I would have lost it before yesterday. What you have had to put up with sounds awful. You could try giving the helpline a ring on 08453710554. Ruth is so knowledgeable, she may be able to offer some advice.
Only wanted to send hugs and wishes for a better day for you today
Love Wendy xx
Dear Northerngirl
There is no way you should not have been seen straight away by a oncology doctor/chemo team having an obvious reaction to chemo. You are within rights to make a complaint.
I think you have been very brave. I would definitely have lost it straight away
Too cross on your behalf to say anything sensible.
I don't suppose you've heard from the specialist nurse? We are right behind you. Don't think for a minute that you should feel to blame for the way you have reacted. You have been extremely brave, faced with what you have been suffering and the lack of care you have received.
Don't mince your words when you see the oncologist tomorrow.
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