Roll up, roll up and join the lacies for CANCER SUPPORT THREAD 59 - anyone with cancer is welcome (and those awaiting test results)

[WhatWouldLeslieKnopeDo]

Hello everyone,

This is the cancer support thread, which has been running for many years under different names. Most posters have breast cancer, but various other cancers are represented too! Whatever cancer you have, feel free to join us. We also welcome those who are awaiting test results to find out whether or not they have cancer. We know how difficult the waiting can be and we are happy to hold your hand. Hopefully you won't need to join us permanently

Feel free to ask any questions. There will usually be someone who knows the answer or will know where you can find it.

Whatever you do, stay away from Google!

You can post anything you like here. We don't mind swearing or complaining or angry ranting. We aren't brave or inspirational and you don't need to be either. Nobody signed up for this, but we support each other as best we can

The previous thread is here

Lovely lacies, I am terribly sad to be the bearer of horrible news. I had a message from Chewing asking me to let you know she's leaving mumsnet. Sadly she's in hospital with limited internet access. Her liver is failing and she has been told she hasn't got much time to go.
She asked me to tell you all how much she enjoyed chatting on here.
I know I won't be the only one to miss her kindness, stoicism and generosity of spirit.
I know this is horrible news and reminds us quite how grizzly cancer can be. But remember hers was a particularly tricky sort of cancer and I've never been sure her hospital was entirely um engaged in her treatment.
Anyway my thought are with her and her family...
Xxx

Oh no, no, no, no, no. Freddie
Is there anything we can do to help Chewing feel better? Anything at all?

It's absolutely crap and I'm utterly miserable... and surprised by how cross I feel.
Sadly I think there is nothing we can do....fucking cancer...xxx

What utterly dreadful news. Thank you freddie for passing it on. And as Twitter says, please let us know if there’s anything you think would help. I don’t want to bombard her with messages, but if you are in contact again please do pass on our love and best wishes

chewing just in case you are lurking, thank you for all your support on the thread, especially when you’ve been suffering so much more than the rest of us. I hope that you are being kept comfortable you and your loved ones are very much in my thoughts

freddie be gentle with yourself

Since I was last on here has been such terrible news updates, lots of love & thinking of you all.

Sass how are you getting on?

I'm so, so sorry to hear that freddie. very much thinking of her and her family 💐
Shitty, shitty disease.

I'm doing ok Whatwould pathology results came back as grade 2, stage 2b so very thankful. Find out on Thursday when my chemo starts, dreading that. Recovery from mastectomy good, but slower recovery from lymph node clearance than I thought, but heading in the right direction.

Hope you're as ok as you can be x

I am not a poster on this thread but I've received very helpful advice from posters regarding family members who have had cancer. But I wanted to post to say I was sorry to hear that Chewing is so very unwell. I echo others in saying I hope she is well looked after and has support of loved ones close by. Much love

I think others have found the same re recovery from the node removal Sass. I guess there’s a lot more going on in the armpit region really. I hope you’re fully recovered soon. I’m glad the pathology results have come back alright. Do you know what chemo regime you’re having? Fingers crossed for you on Thursday :)

No I don't know that yet, hopefully find that out on Thursday too & thank you x

Utterly devastated to hear chewing's news, we were diagnosed at around the same time. Bastard buggering cancer.
I'm sending lots of loving thoughts to her and her family and hope she is getting the care she needs and deserves.

I am never sure quite how to proceed at moments like this, despite there having been far too many of them during my time on this thread.

Whatever you’re feeling is OK.

But also any newbies lurking, or anyone who has any worries, please don’t feel you cannot post about those too. I would hate anyone to be reading and keep quiet because they don’t feel their worries are as big. There’s plenty of room here for all who need it.

I hope I have worded that OK. Extra love to all lacies tonight and keeping chewing very firmly in my thoughts

Well said Leslie.
Such horrible news to see this evening. Lots of love to chewing and to everyone else here.

This is terribly sad news, thank you for letting us know. I remember when chewing first started to post and I confidently told her what would happen and how the process would work, as we all do when new people arrive here. I think I was wrong on every aspect of what happened and many of us have been angry and worried about her treatment. Despite the many setbacks I have enjoyed reading her posts and been amazed at her generosity towards the rest of us even when she was having such a tough time herself. Chewing, I hope you are being well looked after now and you have a team who are stepping up and taking responsibility for your care. I'm so sorry it has turned out this way.

I hate the way the word fight is used in association with cancer but I really do feel that Chewing has fought the system to get what she needed and has been let down many times. For anyone new reading hers has not been a typical experience and it's been frustrating to watch.

Chewing you will be in all our thoughts now, you have so many friends here thinking of you.

After a very brief spell here at the end of last year (results at breast clinic were normal) I've been lurking here on and off and have been touched by everyone's stories, and been exasperated on Chewing's behalf. I'm so sorry it's come to this. If you're reading, Chewing, I hope the end is peaceful for you. Bless you and your family.

chewing In case you are reading, I'm so sorry to hear how very unwell you are, please know that we are all thinking of you, if that's any comfort, you are in all our hearts. If there's anything any of us can do please let us know.
leslie you are wise beyond your years with your words.

mrs How very unsettling, from your description it sounds like it's more you are not post menopausal than a uterus thing. When I was put on tamoxifen (at 48) they thought that I would be post menopausal but one of my hormone readings was still way off. They switched me to letrozole and retested after maybe 2 months (I can check) and then my readings were all def post meno.
The point is - and my consultant was very interested in this - that the tamoxifen was disguising the true hormone levels and keeping this one artificially high. The letrozole revealed the true levels as it were.
Hopefully it will be something like this for you perhaps? they said 52 was about average for natural menopause so you are well within range for perky ovaries
Letrozole is rubbish for your joints - I can barely walk when I get up each morning as my ankles just don't work

pepper thanks for your reply. I did have a blood test four months ago which seemed to reassure them that I was menopausal. I just feel that the tamoxifen was disguising things. It would be interesting to be retested.

The anastrazole sounds very similar to letrozole. I have very painful knees, ankles and feet. I am in pain constantly really, even through night and I'm generally worn out. I feel like I'm walking through treacle. From what I can gather the oestrogen that generally keeps your joints supple is being stripped out of the body savagely and quickly hence the pain and lack of mobility. I guess that would naturally happen over many years but these drugs make it happen very fast. I'll see what my nurse has to say later, it will probably just be wait for the scan!

mrsrhod yes indeed. chewing has had to fight the system every step of the way

Super it’s always lovely to hear from those who have passed through the thread, though I wish it were for a cheerier reason. I hope that you are doing well

LittleGreyCat how are you? I hope you’re getting used to your new haircut :)

pepper it’s amazing, though also sad, that no matter what someone is going through, there always seems to be someone on here who can offer some reassurance/experience the joint pain sounds really wearing

One of the oncologists phoned yesterday and I have another pulmonary embolism, so back on the blood thinning injections. I’ll get my full scan results tomorrow, but he said it all looked OK so fingers crossed.

It is very autumnal here. I hope everyone has as good a day as can be.

Cross posted mrsrhod but your description sounds so painful. Good luck with the nurse

Just a quick update. The nurse said I had to wait for the scan before I can have a medication review, fair enough but no sign of an appointment so I phoned radiology. Apparently they bounced the gp request back a week ago saying I need to be seen in the women's unit. Spoke to the women's unit and gp has not been in touch with them and it's a two week wait once he does. Called the local private hospital, two streets away, who can scan me on Friday, got permission from bupa and have requested the gp makes a referral this afternoon. My hospital have been great but they do seem to be struggling now and I worry for people who are not willing or able to pick up the phone and get things moving themselves.

Leslie sorry to hear you need more intervention. It is a perfect autumn day here in Yorkshire , my favourite time of year.

mrshod - it sounds very tiresome having to constantly chase things up, and I totally agree it's worrying for those who don't have the skills or energy to do that.

Leslie - sorry to hear about the need for more injections. Good luck with your scan results.

I am currently really struggling with pain in my back, leg and groin on one side, which I was told is related to the tumour pressing on nerves. It's a constant reminder that I have cancer and it's really getting me down - I'm convinced I'm going to die sooner rather than later

chewing I am so sad to read this news my thoughts are with you and your family and I sincerely hope your team steps up at this point! Wretched, shite disease .
mrsrod you have my every sympathy I have made it to 12 months on anastrozole and although the flushes have eased a bit the pain is horrendous , i am going to ask onc for a change when i see him next month maybe the letrozole will be kinder I have known before to change with good effect.
A big general squidge to everyone on the thread xxx