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

[Tilllly]

New thread
All welcome, reluctantly

Hope so ❤️ 😘
No idea if pain is an indicator

Oh my goodness I have just found this thread - please can I join you all? I'm delighted (well... not delighted. Reassured? ) to find others speaking my language...

I'm a bit too tired to write much but long story short: grade 4 glioblastoma, 22 months post diagnosis, I'm 44. Had craniotomy about 1 month post-diagnosis, no regrowth of tumour but literally anything else that can go wrong has, including spinal collapse. It's now become a running joke with the many medical professionals that i am involved with that if there's a rare side effect then i will almost certainly end up with it.

i have a young teenage daughter and
two lovely adult stepkids and a pretty wonderful husband (obviously with some caveats!). Am generally pretty cheery but cannot be arsed with 'survivor' talk etc.

would love to join in and share some of
this shitshow - am currently housebound and essentially bedbound so am bored out of my mind!

@ShalommJackie Oh liver pain gone sounds just amazing, fingers crossed for you.

@changingstages Hi, sorry as always that anyone needs to be here but welcome to the shitshow!

@changingstages Welcome. I was also bed bound with spinal collapse a few months ago - that's how I found out I was Stage 4. Can anything be done about your bones? I have full scaffolding in my lumbar now and gradually recovering, though I'll never be the same.

@changingstages So sorry you have had to join the shitshow! And amazing news that your tumour hasn’t regrown as I know from personal experience what mega shitshow glioblastoma is.

I am in the cancer assessment unit due to raised temp. I had the 2nd part of my shingles vaccination yesterday and the full side effects are on show. Woke up with temp. yo-yoing between 37.1 and 37.8. Also sore muscle. And sore arm where the injection went in. It probably is due to the vaccine but the cancer treatment helpline said to come in just in case. At least DS is away at P7 camp until Friday lunchtime. Please, please let me go back today. But I did bring an overnight bag, just in case. Being in CAU brings back some strong memories from when my DH had to be there. All the smells & noises, it’s causing me PTSD.

Got my first PIP payment into my account. It bittersweet. Same with the blue badge -nightly useful but it is a reminder of this whole shitshow.

@Tilllly How did the MDT review go?

Also got an email to phone the company (Roche) that is involved with my Foundation One test, I shall be £3000 lighter by 9:30. But it’s worth doing the tumour profiling and spotting any potential mutations so that the treatment can be more tailored. Not available on NHS, sadly.

👋🏻 @changingstages
Welcome, sorry you are here. But this is an amazing bunch of women and they'll get you through anything

I won't hear about the MDT until sometime today, I'm not really expecting any change, but even if it comes back with the same treatment plan, I'll feel reassured that several people have had a look and agreed, rather than just one oncologist

@ShalommJackie glad to hear your liver pain has gone . That is definitely positive news.

@changingstages sorry you find yourself here.
I've not long found this thread myself but find everyone has been lovely and supportive. Just having this little space to come to and moan, rant or just talk has been very helpful to me

@balkanscot I'm sorry you are experiencing PTSD & I hope you get to go home today.

@Tilllly I agree with you about several people looking at your
case rather than just one must be reassuring.
I hope you don't have to wait too long for the outcome of the MDT meeting.

@Tilllly It definitely is a huge bonus having several experts looking at the case, who knows, one may spot something that others wouldn’t - by that I mean that one of them may know of a clinical trial or something else that may be worth exploring further. Keeping my neuropathic fingers for you.

Back home with a 5-day course of antibiotics, apparently my neutrophils are 0.9. Bastards! So got given a 5-day course of antibiotics which hopefully means that my next treatment can go ahead next Tuesday. I shall do some serious damage to any breakable surface otherwise.

Two bewildered trainee doctors were wheeled in when the registrar was checking me over. I could definitely be their mum! I had to describe to them what neuropathy is like.

All in all they think this little jaunt to CAU has been caused by the shingles vaccine, there are no traces of infection in my blood. I may start wearing a mask anywhere indoors such as shops. I am avoiding public transport and wear a mask when going to the cinema. DS and I did go to a hotel last weekend - may stop that as well for the time being, as you run into people indoors every step of the way. We swam in the hotel’s swimming pool, too, so that probably wouldn’t have helped.

@balkanscot

I am no expert, but I thought you couldn't have the shingles vaccine when you were having cancer treatment, because it is a live vaccine. You can only have the attenuated ones, e.g. pneumonia

MDT, they are going to do it at the next weeks one, because there wasn't enough time to get it in by the submission date. So it has been looked at but only by the radiologist consultants and one senior oncologist

As expected, they have all agreed with the progression of the cancer, and that the treatment plan I am on is the most appropriate

There is no clinical trial in the area for my condition

My oncologist has said he will submit it for review by peers in neighbouring trust if I want - which I don't but it's reassuring that he's offered

Thanks for updating us @Tilllly and I wish you many floofy puppy hugs.

Hi,

Hope it's ok if I join in.
I went to hospital 3 weeks ago with weakness in my last hand and leg. Has back pain for years but gp said nothing there.

Was diagnosed with a brain tumour 2 days later. They have now found that the brain tumour is secondary to bowel/rectal/anal cancer.

They also found mets in my lymph nodes, lungs (lots) and spine.

The primary tumour is inoperable. I have been told it will only be palliative care, no treatment.

I am 46 & have 3 children, aged 11, 15 & 27 (has autism) plus dog. My wife has been amazing through this.

I just keep thinking I don't know how I went from a back ache & weakness to terminal cancer in less than a month

We have only told the children that I have cancer, not anything further.

We are due to see an oncologist for the first time in Friday as they should have my biopsy results

@Jouleigh I'm so very sorry, that's such a sudden and awful discovery and I can imagine you'd be in complete shock. What a fucker this disease is.

You are most welcome here, we have lots of support, puppies and dark humour plus hugs and tea or something stronger.

Best of luck for the onc visit and I hope they get you set up to see someone about pain relief.

I posted on this thread a few weeks go... my wife's lung cancer mets>brain/bone/liver/everywhere is moving very fast. Carers coming in 3 times a day, and me and her daughter giving her morphine every 4 hours, including thru the night. In one her few lucid moments, my wife whispered that she wished it was over.

Last night, my wife managed to fall out of bed, despite the bed rails, and when I found her on the floor this morning I thought she was gone. My step-daughter and I couldn't lift her, but a nurse-carer came very quickly.

So, we are on death watch. Sorry if I'm depressing you all. I am strong one minute, in tears the next. I couldn't do it by myself, but the children (all in their 50's) are wonderful.

@CanadianJohn you might find more support on this thread I'll link it.

This thread is for patients only really. It's a shit place to be and we're not equipped to support other people who are not patients themselves.

The storm part 3 http://www.mumsnet.com/Talk/lifelimitingg_illness/4729740-the-storm-part-3

Hope that's not too rude.

Thank you, I'm just whining, I'll look at the other thread.

@Jouleigh
I'm so sorry to welcome you to the thread. What a horrible shock for you

When you see the oncologist on Friday, you'll have more information and be able to plan

I recommend you get a notebook as you'll have lots of appts with different people, it's easy to lose track of who said what

@Jouleigh welcome - I think more than a few of us have been in your shoes and get what a total life whiplash an initial terminal cancer diagnosis can be. But its not over until its over, and the human body can sometimes do weird and magical things. (or at least thats what I like to try and tell myself in dark times!). Give yourself the time to grieve, get a treatment plan, and then see the lay of the land, you just may be surprised at what you can still do and enjoy.

Another sleepless night thanks to nerve irritation in the pelvis. We moved a hard chair into the bedroom so I have somewhere to sit up middle of the night that is more comfortable, but Id really really like some sleep now. Actually this chair is pretty good for nodding off in!

Welcome new peoples, sorry bit too weak for a long post. In hospital had 2 blood transfusions this afternoon and having one tomorrow morning then a CT scan at another hospital. Crazy.

Love to all will.post when I'm pinker.

Well I have various fuckery (fuckeries?) going on and it doesn't amuse me. I suppose it wasn't intended to.

@HerbalRefreshmentt Oh I hope you do get some sleep. A good portion of my sleep consists of nodding off in chair also. Not ideal but better than nothing. Sometimes I'm not sure which is more comfortable, bed usually somewhat better I guess but sometimes neither is good. It's just nasty to be up with pain/medical issues when you need the sleep so badly!

@WrenNatsworthy Oh good that they've given you the transfusions. Not fun to be in hospital though, I know. Wishing you vastly increased pinkness. Even if you have to drain all the other patients/staff of their blood. Been watching a bit too much horror I think, sorry! Seriously many hugs and hope you are feeling more robust soon. xox

I've been back at work this week, a few hours a day for a few days. Mostly ok apart from a payroll fuck up.

So, anyone got any suggestions as to how I deal with the insensitivity of my colleague who starts every email "I hope you are well"? He knows what I'm going through. Every time I read it I want to throw my computer out of the window. Ideally I'd throw it at his head but we work in different offices.

I really want to reply "Thanks for your message. In response to your first comment, no I'm not well, I've got stage 4 cancer and I'm dying". And then move on to whatever else I need to say. However I think that might get me a conversation with HR.

@SewingBees - my oncology nurse starts emails with ‘I hope you are well’
I am sort of well just now - still have stage 4 ovarian cancer. I think it’s really stupid of her.

@RedRosesPinkLilies There's just no excuse for that level of crassness.