CANCER SUPPORT THREAD 60! Here we are again... join us if you have any sort of cancer (or if you're waiting for cancer test results)

[WhatWouldLeslieKnopeDo]

Welcome everyone to a shiny new thread :)

It's a club nobody wants to join, but if you need us, you are more than welcome. If you're waiting to find out if you have cancer or not then pull up a chair. We hope you won't need to be here long, but we are here as long as you need us. And if you do have cancer then this is the place for you. Swear, rant, scream, laugh, cry... someone will have at least an inkling of what you're going through!

We only have one rule, which is do not Google. Though perhaps we should update that to please Google responsibly as few can resist completely!

I hope this thread will be a source of support for all who need it

Our previous thread can be found here

nicky have you ever tried metoclopramide? It works in the opposite way to most of the antisickness meds - speeds everything through. I find it helpful. It might be worth a try if you can't tolerate the others

I have tried it Leslie but I'm allergic to it - it gives me some bizarre neurological issue where I'm all twitchy and restless! But I might ask if they have an anti-emetic with a similar kind of action. Thanks for the reco x

Oh no, that sucks. I hope there's something else that might work in a similar way. The prune diet doesn't sound much fun

Thanks Leslie - are you feeling less delicate today? x

Yes thanks nicky. Though I decided to go to the supermarket which was a bit of a disaster only about five minutes walk each way, but my lungs really didn't want to cooperate! Nasty winter air. I am counting down the days until summer

I'm a little bit out of touch I'm afraid but leslie I'm very sorry to hear about your friend.

pepper you were asking about my situation I think. After about 30 months on tamoxifen it was decided last summer that I must be menopausal and I was switched to anastrazole. 2 months after I had two bleeds. After scans and biopsies the decision is that I'm not menopausal at all, so actually it was not post menopausal bleeding, just normal periods which had been largely suppressed by tamoxifen. I now need to be menopausal to continue on the anastrazole so I'm having ovaries and tubes removed.
I'm losing faith with the gynae dept at my hospital so I'm seeing a different consultant through bupa on Tuesday. I've been given a potential surgery date with him of 13 February. Given that the NHS is cancelling operations I'm not convinced that they will be able do this for me sometime in April so if the new surgeon is happy to go ahead I'll have it done privately. I've been waiting since September, I've had enough, I've fallen between cracks in the system too many times and I can only have three more zoladex injections. To be honest if I hadn't had my medication switched last summer I wouldn't have to have this surgery, they made the wrong call. I just want to see an end to it.

Thank you mrsrhod. Sorry that this gynae stuff has dragged on for so long. I hope the Bupa consultant is helpful tomorrow and that you can finally get it all sorted

Can I ask a quick question about surgery?

Does my husband have to wait until visiting hours to visit me on the day of surgery or can he hang around and wait for me to come back to the ward?

What did your family do?

Maybe I'm being pathetic but I'd quite like my husband to be there when I return to the ward but I think he's planning on going to work and coming back in the evening.

It really depends on the ward, I think. Some are more flexible than others, depending on how ill the patients are, how strict the manager is etc. You'll probably be in the recovery unit for a couple of hours after the op anyway. You're not usually allowed visitors in there except in special circumstances (my parents have been allowed to visit me in there once, but I was quite unwell and had to stay there for much longer than expected).

Do you know what time your surgery is?

Meant to say, my parents have always gone to work as usual. There's nothing they can do while I'm in surgery and I think it's better for them to have the distraction than to be sitting around worrying all day.

Thanks Leslie, Had pre assessment today , I'm first on list so she said I may be back on ward by 1pm ish so visitor can come at normal time 2-4 or in evening.Think I'll tell him to wait until evening and come then -feel better now I've had the talk with the nurse.
And no bowel prep..that was a nice surprise ! Just the normal NBM and some carb drink thing to take. I've booked the day before off sick with work as thought I'd be doing prep but hey ho..I'm going to stay off anyway .

ggirl lucky escape on the bowel prep front! Good luck with the op. My husband was allowed into HDU after my op and was also allowed to stay with me on the ward until I went down to theatre in the morning.

mrsrhod no wonder you are sick of all the uncertainty. I hope your consultant manages to get everything sorted for you.

ggirl that's good hopefully you'll be all drugged up and sleepy afterwards anyway. Definitely a lucky escape with the bowel prep. Will you have to have an enema? Even if so they're actually nowhere near as bad as the bowel prep! :)

nicky are you feeling better now?

I am feeling a lot better now, thank you Leslie. Still a bit feeble, but that's quite normal! I'm just pleased the nausea has abated. I'm even working this week (but from home, so no-one can see how terrible I look!). How are your lungs complying? Hope you're feeling the benefits of your blood transfusion.

Ah, bowel prep. After the second sachet, they said, you have 45 minutes to get to the hospital before bowel-mageddon. Oh, the hospital that's 1hr 10 minutes away?! What a trip that was ...

Hi
Am back from clinic
All OK mammogram wise
thank you so much for the hand holding and advice
Hope its OK to pop back and say hi occasionally?
Xxxx

That's fantastic news mrsreynolds what a relief. And of course you're welcome to pop back

nicky I'm glad your nausea has improved. It's so draining. Good you're managing some work. My lungs are a little better thanks - as long as I stay indoors!

Feel a bit tearful which us ridiculous
[Blush]
Hope everyone is ok and that meds are kicking in and helping x

Mrsreynolds so glad your mammogram was ok. Of course you'll feel tearful, it's totally understandable. Be kind to yourself and take some time out for yourself if you can, it's a big shock/relief for you so being emotional is completely normal.

Now go and treat yourself to a big glass of wine

I've just eaten a bowl of choc brownie and cream as big as my head
😁
Thanks again x

I've seen the private gynaecologist and he is prepared to operate. He was very cautious and said several times there is no gynaecological need for this operation and he had never heard of this before. It's a rare situation and the more I dwell on it the more I'm getting cross. I'm having to have surgery to correct a decision which turned out to be the wrong one. I feel rather backed into a corner.

Hi all - forgot to come back and say how I got on

Thankfully the family member wasn't on duty so managed to get in and out without coming across anyone I knew. I didn't tell anyone I was going down apart from dh and I'm hoping to keep it that way.

Can I just say how impressed I was with the whole process? - at every stage of the appointment and every medical person I had dealings with I was treated as a human with feelings, everything was explained and at no point was I made to feel like I was wasting anyone's time! Complete opposite to any dealings I've had with other departments within the hospital over the years.

Went in and had a physical exam, consultant agreed he could feel something but in his opinion it was nothing to worry about - sent down for mammogram (omg those babies hurt!!!!) and had results within half an hour all clear and they think it's hormonal changes due to the menopause so nothing to worry about. So huge sigh of relief and it's one of the few times I've ever seen dh cry.

Huge hugs and handholds to those of you going through treatment - I'm sitting here in awe at the good humour and positivity shining out from each of your posts. Thankyou for the support you gave me and I wish you all the very best of luck for the future.

Hello lacies.
Leslie, sorry about your friend. How are you feeling now?
Mrs what a situation that is. On the one hand, it's good you're being seen to, but it's so infuriating how they've complicated matters for you. So much unnecessary anguish and stress.
Waving to everyone else.

Well royal bupa have refused the surgery as the letter the consultant wrote was pretty vague and the nurse at bupa who approves treatment has thrown it out. I'm just so beaten down. Three consultants have deemed this surgery essential and a nurse has said no.

The consultant is going to write a new letter and we'll have another go. Failing that I'll have to hope the NHS can operate in April before my zoladex injections run out and I'm left unprotected again, by which time I will have been on the wrong cancer meds for 12 months. You couldn't make it up.

Mrsrhodgilbert, what an awful situation you are having to cope with. You could do with a health care professional that is willing to push through all the barriers that are surrounding you. I'm 99% a lurker on Mumsnet but I'll follow the progress of the posters on this thread and send so many good wishes to you all

I came back just to say that my last set of biopsies were clear. I am exceptionally lucky and very grateful. I told so few people about the investigations that I feel I am celebrating internally! A fellow member if staff has just come back to work after a mastectomy so it would be crass to talk about my luck.

I am continually amazed at the courage and strength of people on this thread and how mumsnetters support each other when they are facing so much themselves. Hugs to everyone!!!

So pleased for you magbob, mrsreynolds and whojamaflip - all the best to you all.
mrsrhod - how bloody frustrating. It would be, in any case, without the April deadline hanging over you. Did you see the BUPA consultant at a private hospital? Our local private hospital has a team of oncology nurses that deal with BUPA to get agreements for new treatments/prescriptions and if it's the same at yours, they might be able to offer you some advice on what sorts of information tip the balance? Good luck xx