Stage 4 cancer... ? incurable? Thread #2 is here. In memory of our inspiring, lovely mowly77

[Tilllly]

New thread
All welcome, reluctantly

@Florsilvestredelcampo I'm ok thank you. That's reassuring to know, thank you for that x

I'm in. I've got mets in my peritoneal tummy area (proper medical term that is).

Can I book a place on the trip to Wales please? Shall we hire a minibus?

Just to let you know that Knotsy & Pitsey have just messaged me to say the Woolly Hug blanket for the lovely Mowly77 is now made for her address so it will be there for her husband and 5 year old DD before too long. Thanks so much to everyone who helped with that and thinking of you all.

https://www.mumsnet.com/talk/woolly_hugs/4967140-woolly-hugs-sad-news-we-are-afraid-making-a-blanket-for-lovely-mowly77s-family Think the pics will go here.

That's lovely, thank you.🌹

Thanks Wren And the SomethingToLookForwardTo charity I was given a free week in a lovely 5 bed cottage on the Cornish coast in July during chemo, you don't need breast cancer just a cancer and in treatment or within a year of treatment. Occasionally they get gifts generally left when people die which specify a cancer and in which case it says in the details. They also do things like gardens or 1 night hotel stays or meals. Lovely lady runs it whose Mum died of breast cancer, currently on maternity leave but still going by others. Sometimes with the bigger things you need to apply a few times but they prioritise stage 4 and people with low incomes and for the holidays they try to let to maximum numbers allowed so a place for 5 they try and give to a family of 5 but we got as a 4 and DD took a friend. About 20 homemade scones with cream and jam where there on arrival, of which I think teen DS ate about 15.

Ooh lovely, thanks @Penguinsa

I am in hospital after today's blood test came back at 69.
I don't know if I told you that after last Monday's result of 75, I came up to hospital, they repeated the test and sent me home as I'd gone up to 82.

So now I feel crappy enough for everyone, I've been admitted. The out of hours GP sent me here at 7.30pm. I sat in A&E until midnight, was about to discharge myself until morning, then they found a cubicle and a bed.

Knackered.

@Penguinsa thank you for letting us know.
I love the idea of the woolly hug blanket.
Well done to all who helped to make it.

@WrenNatsworthy so sorry to hear you are in hospital again.
I hope you are feeling better soon and don't have to stay in there too long.

I've got chemo and an appointment with my Oncologist this morning.
I'm so anxious they are going to pause the chemo as I've developed a very strange rash on my tummy.
It's only a small rash, actually two small rashes that are red and blistered.
At first I thought maybe I had been bitten while away glamping but there are no signs of any bites.
Now I'm worried it could be shingles although I haven't been unwell with the typical shingle symptoms.
Yesterday however I did feel incredibly fatigued and my legs felt heavy which is unusual for me after having my week off chemo.
The shingles rash is supposed to be painful and itchy but mine isn't. Saying that though most of my abdomen area is still numb so maybe that's why.
I did show the nurse on Oncology yesterday when I was there having my bloods done but she didn't know what it was and just gave me a tube of dry skin cream.
It's tiring always having to worry about what seems like small things.

My friend has an itchy rash on her tummy at the moment too, and she's questioning shingles. Hoping it's a nothing @GoldenDog1 and you can have the Chemo.

@WrenNatsworthy thank you.
My Oncologist saw me early as he wanted to look at the rash before my treatment went ahead.
He thinks it may be a fungal infection on the skin caused by the chemo.
Anyway good news is he was happy for me to receive my chemotherapy (sat here having it now) and he's prescribed some cream for the rash.

He did tell me today that the radiologist has looked at my last CT scan again and decided I won't get an ultrasound scan as they don't believe I have a hernia.
Instead they'll check again on my next CT scan next month. 🤷

I'm hooked up to blood after a lot of back and forth. I wave my canula at you gently , in solidarity @GoldenDog1

@WrenNatsworthy hey sorry you're in hospital, good they've hooked you up to the blood you need but I feel for you with the waiting beforehand, sounds just exhausting. Hope you are getting some good sleep if that's even possible in hospital.

@GoldenDog1 So glad you are getting the chemo!

@Penguinsa I shall look forward to seeing the blanket photos, so many lovely squares.

As for me I am still in the very very fancy short stay palliative unit at the cancer hospital. I feel over my covid, mobility still poor and confined to bed mostly, eating all I can as I wasted away again so must fatten up. Physios very pleased with gains though and the next step is rehab to try to get me mobile. I am still so weak but determined! At least a goal to occupy my energies. I can't take my lovely pain medication pump into rehab so I'm trying to be brave about it.

Ahhh, @LuciaPillson good to hear from you. I'm out of hospital now, they sent me home after the blood transfusion. Had a good night's sleep thank you.

Hope the food is good at the fancy unit, sounds like a lovely place. I hope you get some pain meds even without the pump. Go you, lovely Lucia!

Id just like to state here that denosumab/Xgeva bone strengthener is the devils juice. Seriously. Its a special kind of bone pain and I groan every time one of those cheery nurses says and we've got your bone injection here. Its 24 of misery and cold packs and extra painkillers and worrying you didn't make any progress but then remember oh yeah, bone injection.

@WrenNatsworthy oh not again! Actually my Hgb is drifting slowly towards 80 so they want to toss some blood into me this week or next. Guess its next week now as they didn't run the blood screen yesterday when I was in and Im going to refuse if they schedule that for this week because im not going in two more times when I dont have to. I was at 82 so I have a little leeway. I did think of you when the locum mentioned 'may want to consider transfusion' like dude, I don't have a say in this!

@GoldenDog1 I also have some itching and a slight rash on this weird bruised part of my sternum which also has swollen cartilage. No one can tell me what it is or isnt. I put on some Cortisone cream from the US to stop it itching at least. I guess rashes are going around?

@LuciaPillson Try putting on an 80s type of mix tape/playlist with all those big hits of winning - like from Rocky or the Karate Kid, just before rehab. I did that the first time I was rehabbing this leg :P Cheesy but it worked!

Off to get another ice pack...

Ooh hb twinzzzz @HerbalRefreshmentt what jolly fun! I also have swollen cartilage on my sternum. No rash though so no hat trick snap.

Get that precious blood down ya! I have been reading about denosumab and wondering should I ask for it, now I'm offputted. That isn't actually a word but I'm keeping it. Sorry it's so bloody painful.

I have a man and a teenager in my garden putting down decking. The gardener is someone I've known for years. He has got a few surprises up his sleeve because I trust his creativity- so he told me to keep my curtains closed until later. He said I'll be out on the decking by the end of the day. He's like my own personal Charlie Dimmock.

@WrenNatsworthy I am on Denosumab injections and I'm not getting any side effects so don't be put off trying it - you might be ok like me @HerbalRefreshmentt I'm sorry to hear it's not so good for you. I've never researched but are there any alternatives? Do you know if it's helping with bone strength and therefore worth putting up with?

We been away camping for a few days very lovely but very wet at times. We were in the Quantocks so no internet,phone signal cut off from the world it was 2 cancer free days.
I ended up telling a friend that I would be having chemo over the summer as she was being pushy about organising more trips over summer which I won't be doing.
her reaction washed over me but I've been mulling it over. First of she said "oh will that end it?"
"No I will always need more treatment " it what I said "until I cancer finally kills me" it what I should of added.
Then she asked me can't you get some stem cell treatment?
Her stupidity honestly didn't register the first thing I should of said is not all cancers are the same therefore not all treatment is the same.
Secondly stem cell treatment is brutal, it not as if it's offered at a health farm
"Hello I'd like to check in for my 9am colonic,11am chemical peel and after that I'll have some stem cell treatment. I know it's tough regime but when I'm feeling like a newborn baby it will all be worth it"
God save us from people and their stupidity🙄

Cheers @SewingBees I'll ask the question. I did speak to someone she said something about going to the dentist first?

@Florsilvestredelcampo I think some people are just programmed differently - they don't like to hear that there aren't solutions to everything.

I think if you don't literally spell it out then some people just don't understand or perhaps don't want to think about it, or can't take it in.

When I told my oldest friend last summer about my diagnosis I thought I was clear about my prognosis but it turned out a few months later that when I had told her, she hadn't taken it all in properly. She's an amazing friend, an intelligent woman and has watched her mum die from cancer and supported her 14 year old daughter through ovarian cancer. But clearly when I told her, it was too much to take in and probably, because she is such a close friend, perhaps I wasn't as brutal with her as I am with other people. With them I find it very easy to say I have an incurable cancer, I am receiving palliative care to buy me more time but I will definitely die and it will be be fairly soon. No room for ambiguity there.

@WrenNatsworthy One of the rare side effects of Denosumab is necrosis of the jaw, so they get you to have a dental check up and any necessary dental work done before you start the drug. You also have to pause taking it for a while if dental work becomes necessary in the future.

@HerbalRefreshmentt I'm so very sorry you're going through it with the bone stuff, I hate to think of you on so much pain and I wish we could make it go away.

I don't know that 80s music well at all! I somehow missed out on some pop culture along the way. But do agree that something motivational sounds like a good idea.

Re being clear about one's situation, I recently had to talk on phone to two fellows at the bank and I was rather sure I'd mentioned dying/incurable to at least one of them. Yet one said to me twice that he wished me a speedy recovery from the cancer I've just been diagnosed with. Makes me feel I'm talking underwater or something, maybe only the whales can hear me? People sometimes listen to the voices in their own heads, perhaps.

@TwigTheWonderKid Oh I am so sorry to hear about your friend's daughter going through that so young, that really is sad. Many hugs and hope you're doing OK.

Biggest hugs to everyone on the thread and wishing you all well.

@WrenNatsworthy most of the hormone positive breast ladies are on denosumab because they suck all the estrogen out of us so that equals more brittle bones and osteoporosis, though the drug also has some some sort of formulation to make it more difficult for bone mets to take hold. I thought for some reason you were a different cancer, but if not then its certainly something to be added to your treatment plan.

@LuciaPillson thank you so much for your concern :) I got over that discomfort only to be whacked by the fatigue fairy this afternoon. I walked last night and did an arm weights workout that I guess was just too much so...tofay has been a resting and tv day after about 2pm. Going to go try ans eat some salmon and broccoli for dinner now - hubs made sure I had food before he went off to watch thr big match down the pub and its important I get some fish in me.

Monday I really need to talk to oncologist about this chest lump and bruising though, I showed her last month but now its becoming uncomfortable and worrisome and I think it needs more investigation. This isn't anything to do with the picc line is it? I just think of that thing floating around in my vein and it creeps me out.

My hip is getting stronger and pain reducing though, how is your mobility coming along @LuciaPillson ?

I am a different cancer @HerbalRefreshmentt , however as I hardly move, am post-menopausal plus have a bone met in my spine, I was worried about crumbling bones. I spoke to one of the Liverpool oncologists about it as they happened to ring me about trials. she thought it might be a good idea.

I have mainly slept for the past 2 days, horrible headaches. Day pattern today was awake at 10, breakfast at 12, lunch at 2, sleep from 3pm - 7pm, tea at 8. now in bed and struggling to keep eyes open!
I also had fish for tea - sea bass (from Morrisons), new potatoes and green beans. Bland is best at the moment, thoroughly enjoyed it. May it do us both good, well done on the work out.

Lovely to hear from you @LuciaPillson , how are things ? Hugs right back, and hugs to all.

Where is everyone?
How was your appointment @HerbalRefreshmentt ? Did you get answers re your sternum lump? Hope it wasn't to do with the picc line. Did you get a transfusion?

My hb is down to 65 so it's off to Same Day Emergency Care in the morning for me to see the head vampire.