Cancer Support Thread 92 - Christmas Happy Hour at the Patience Inn 7pm tonight 🎄

[LemonDrizzle10]

Old thread nearly full!

@Queenkong72 am going to PM you as we try to keep this thread for those of us who are "suffering" from cancer, rather than relatives as it's a necessary safe space for us to chat. But am very happy to talk to you away from this thread, because it is a super rare cancer and it's hard to find anyone else going through it.

@EachandEveryone Good luck at work tomorrow. Hope it goes well.

Or get the bus if you are a bit wobbly

When will you know if they'll do it?

Bus is a good shout. I'm sure 3 hours on a bumpy bus will be fine if I've got virtually no insides left.

No idea when I'll hear. In a way am preferring the denial.

@TwigTheWonderKid Is that the same as a pelvic exenteration surgery, in essence, but with a chemo washout at the end? It sounds mindbogglingly complex, but also, it's amazing that it's even possible at all.
My skull base tumour was in a location that was inoperable until the early 2000s. And even now, there are very few surgeons who would attempt to do the surgery - about 3-4 in the UK, with big teams around them. My last surgery (to fix the leak) was done by three neurosurgeons at consultant level and a clinical fellow. Four surgeons for one procedure!

I suppose no news is good news @TwigTheWonderKid

I dropped in at the Maggie's centre next to the radiology department today, as suggested by the Macmillan Information people. Wow, what a brilliant place. Within 15 mins they had me talking to an ex breast cancer specialist nurse who answered all the questions my oncologist dodged on Friday. Such as, the treatment I'm on is the gold standard for my type of BC with mets, I stand a good chance of living with this with a good quality of life for many years to come especially with the Ribociclib (which is apparently a newish drug which is showing very good results, people on this thread probably already know that), I should be fine to go back to work but may need to reduce from full time hours due to fatigue from the drugs. Why my oncologist couldn't tell me all/any of this is beyond me. I also found out that to change oncologist it needs to be requested by your GP, so I'll be having that conversation with my GP on Friday!

Well done, @SewingBees !

I'm also going to try out the monthly support group for others in my situation, and there's a group for carers/partners I'll tell my husband about. Tomorrow after my last radiotherapy session I'm going to see a benefits expert and find out what I might be able to tap into by way of financial or other support.

Brilliant @SewingBees . It's so much easier when you find a pro who answers patiently and properly. It does my head in when things aren't explained well (see my repeated grumble about the water tablet...that isn't a water tablet...it's to support the other drugs...ok, how?...by being a water tablet...I don't need a water tablet atm...but it isn't a water tablet...so what is it...a support measure...what's it's function...to be a water tablet... and on, and on in circles 🙄).

Good luck with your GP. I suspect I am in for some huffing from mine re my request for the heart meds this morning. Shall call the nurse to deal if they do 🤷‍♀️

Speaking of cardio - still waiting for them to call back...shame I'm seeing the nurse this month & not the Reg really. I'll grumble at her instead about how rude the dept are & see what she has to say.

Brilliant @SewingBees

I was planning to meet a friend for coffee / brunch this morning, but of course woke up with the biggest headache I've had for at least a week. I'm trying to get out more, but somehow my body isn't cooperative. Grrrr.

That's all from me.

I hear that @KentishMama

Honestly, I'm sure every round of chemo / immunotherapy makes me feel worse

Forced myself out tonight and glad I went

CT scan is booked in for January 26.
That will show what, if any, impact the chemo and immunotherapy is having on the cancer. It will scan my chest and liver as the primary spread from lung cancer is to the liver apparently

I have not heard back from the MRI scan of my brain yet, so I still don’t know what that little dot is, but I am assuming no news is good news at this point

@Tilllly Fingers crossed for a good result.

I had my last radiotherapy yesterday, followed by a flurry of appointments added to my calendar. Oncology pre assessment is now next week, start the drugs the week after. Plus I have physio and spinal team check ups in the diary. Thank goodness I'm not at work.

I had planned a lovely quiet recovery and sleep day today but the dogs are driving me nuts. The young female is in season and the old male is desperate for some 'alone time' with her! His constant high pitched whining is doing all our heads in. She's getting booked in for spaying asap, we can't go through this again! Luckily it's a sunny day so one can be outside while the other is in, but you can still hear the whining 🙄

Put the tv on loud @SewingBees !

Yes, fingers crossed for a good first result. There's something about having these scans that remind you what you're working with. You can pretend it's not happening in between

Hi rejoined the thread having been a past graduate. Long story short diagnosed in 2020 fallopian tube cancer (stage4) Pac and carbo chemo, surgery then maintenance with Avastin. Second reoccurance Nov 23 treated with caelyx and carbo. Currently on Niraparib.
I usually try to carry on regardless ignoring my (shit) prognosis, I call it informed denial. I'm usually quite successful at blithely carrying on but today I'm having a bit of a meh day .
My ca125 is increasing however I'm well but my next oncologist appt is f2f rather than telephone so that's a worry. I've been having a racing heartbeat which is a side effect of Niraparib, I'm keeping an eye on it and will go in for a ECG if needed. Cancer the gift that just goes on giving.
My son has been diagnosed with Noonans syndrome and has just started growth hormone and he is so scared he couldn't go through with the injection yesterday and it broke my heart.
Today it's just all getting on top of me.x(artist previously known as lisdeflores)

@Florsilvestredelcampo I'm sorry you find yourself back amongst us again; we've had a couple of old faces back here recently so sadly, you are not alone, although that s no comfort, I know.

As well as this excellently supportive thread, some of us set up a specific thread for those of us who are at Stage 4. It's often full of black humour but it's also a place to moan, complain, rage, cry and ask advice from other fantastic women who "get it". It's a bit quieter than this thread but if you want to pop over we're very friendly!

iv thread Stage iv thread

@Florsilvestredelcampo sorry to see you back but glad you can share the hard bits with us here.
I remember from working at a special school that sometimes the kids can use Virtual Reality to cope with tests and treatment. Might the paediatric team have access to that? It’s a game changer for some.
Did you know we now have a Stage 4 thread for those who want to have a space to talk freely? It’s here:
https://www.mumsnet.com/talk/life_limiting_illness/stage-iv-cancer-incurable-roll-up-roll-up-this-thread-is-for-you?page=13

I’m spending less time thinking about cancer and more lurking in Hip replacement threads this week. Counting down the days now.

So I've had an excellently fun day today. Not.

It was my big important scan this afternoon, followed by my cardiology appointment. Let's just say the hour wait for cardiology was made so much more interesting by the explosive diarrhea I was suffering from literally every 3 minutes as a result of drinking the litre of disgusting aniseed flavoured contrast. Which they only told me would be a side effect as I laying down for the scan. I hate to moan when they are trying to prolong my life but I really felt like going back to the CT department to give them some "feedback"!

Snap! @TwigTheWonderKid 😂

Oh @TwigTheWonderKid , that sounds utterly... shit. See what I did there? I'm sorry, I know it's not funny, but I really hope you give the CT team some proper feedback! And I hope the diarrhoea has stopped now...

@Florsilvestredelcampo I'm sorry to see you here again. We were both here in 2020... Back then I had breast cancer. Now it's bone cancer, but a second primary rather than mets, so I'm (weirdly) grateful for that. When is your onc appointment? And I'm so sorry that DS got too scared. I've no advice on that one - what @TopOfTheCliff said re pediatrics seemed like a great place to start.

I left the house today. I had no errands to run and it was freezing, so I took myself to TKMaxx and bought a pile of birthday cards for the million parties that DS is invited to. Not very glam, but I made it out. @Tilllly you're right - important to force yourself out that door! I just wish it wasn't so bloody cold!

@TopOfTheCliff @TwigTheWonderKid thanks for your replies I have found two great charity that support kids with growth disorders and Noonans .He is going to try again tonight and hopefully things will move forward. I have been lurking on all the current threads just not felt like I had anything useful to post.
@KentishMama My appt is beginning of Feb. I get what you mean by being grateful for things that are bad but less bad than the other thing that would be worse. I feel quite resigned to the fact that I will be having more treatment at some point . Obviously I would like that to be later rather than sooner but it's my reality.
After I'd written my post I went for walk/stomp and it lifted my spirits. Tonight I'm of to a local comedy openmike might be terrible might discover the next big thing. With a few cocktails and laughs with friends it will be just what the Dr ordered!

@Florsilvestredelcampo
Fuck that's just 💩
I'm so sorry you're back but you'll know you're amongst friends here

@TwigTheWonderKid
Was it worse than what @KentishMama did?

I would give them some feedback, that's ridiculous