Thread #6, living with incurable cancer, taking ALL the drugs, and remembering our fallen comrades

[SewingBees]

New thread!

I think homeopathy is about dissolving things in water and then seeing if it works ? I’ve had reiki before that was weird !! Sorry you’re feeling so pissed off!

Morning all! Just checking in, hope everyone's doing ok (or as ok as they can)?

@EachandEveryone I forgot you had replied to my pm - I swear the forgetfuness is down to the meds? It's doing my nut in. If I don't write lists/reminders...I forget!!

Dd1's home til tonight 🥳. We went to the last birthday gig on Friday with her bestie! I've got to dye her hair, and cook a roast, today. Not my usual relaxing, crafty Sunday!

Anyone else up to much?

I realised yesterday that there's currently no real joy in my life, just endless dealing with divorce shit, trying to keep my relationship with my daughter on an even keel despite my ex's attempts at parental alienation, medical appointments, drug side effects, feeling obliged to see my mum (which is unfair because she's a nice person and has her own medical issues but I'm finding her intensely irritating atm), work shit, and an endless to do list, much of which takes twice as long to do because of cancer.

I'm looking into finding a therapist because I think I need to be able to express all the crap I'm feeling to someone - I choose not to tell family and friends about all the really shit stuff because I'd turn into a right whinger. And I've booked a pottery class for a few weeks time - I've always wanted to try wheel throwing - and being creative soothes my soul.

I wish I was creative all I seem
to do is watch telly and go to shows. I’m supposed to be at the cinema this afternoon but I’m finding it so hard to get a proper wash and do my hair. I’ve been naughty and found someone that will help me cash in hand I’ve booked her once a week and she will do my hair and cook for me for three days and do some cleaning. It will come out of the pip and I will have to cut down elsewhere.

im owed 6 weeks holiday pay which I should get this month. I can’t believe how expensive this whole malarkey is. My leg is stitched up and am seeing the surgeon this week. My tumor has grown but it’s not as big as it was originally. I just pray the colitis is gone once I finish these steroids so I can get back on the immunotherapy.

I’m off to jump in a lake and go swimming. I’ve become the archetypal middle aged woman obsessed with open water swimming and getting freezing cold. It stops me thinking about cancer for the 40 minutes I’m in the water. Then back to the sofa and a book and my dogs and a nap.
My daughter is 18 and has uni entrance exams on Thursday so we’re not telling her the latest prognosis until much later. She still thinks I’m going to survive this thing so there’s a lot of putting the “normality” face on whilst she’s around then falling apart when she’s not here.

@Sausagesforever 40 minutes? Christ your brave my little town has some local celebrity from gained from it's outdoor infinity pool. Some right hardy types get down there but I don't see anyone doing 40 minutes. It's not for me but it actually always looks great and a great community feel
Talking to kids is always so difficult and although we've always been open with my son we have also been aware to steer away from other big occasions and tell him at the right time.
I'm sorry so many of us on here are struggling it's draining isn't?
Maybe I should join the Blue tits and look again at cold water swimming

I can’t stand the local Bluetits - but you didn’t hear that from me. 🤐
I’m quite hardy & also have a lot of blubber so don’t feel the cold much. But time in the water is shrinking for sure.
We tell our daughter what she needs to know & when we have definitive stuff like surgery & treatment coming up. So far she’s handled it brilliantly but this is going to floor her.

I’ve just made a Sunday roast quite enjoyed it. Plated up and promptly dropped it. My friend thought it was hysterical I was screaming like a banshee I can’t feel my fingers when will he believe me? I mean it is funny I guess and he did clean it up but it’s just another thing. How can I check and draw up drugs at work if I can’t even hold a plate?

What has happened to this thread please?

Hi! We seem to have moved off the board. A combination of worried about privacy and recent loss of one of our lovely ladies has upset a lot of us.

We have a Facebook group if you’re interested? Are you stage 4? Sorry to ask!

How is everyone ? I’m really struggling with fatigue at the moment

Thanks for replying @sellotapechicken I am not stage 4 currently but someone I’m close to is and the support on this group has been immense. (She doesn’t want to join but this group has helped me suggest things to her. It has really helped.) I haven’t ever posted as it is not my place but have often come here.I hope you don’t mind. I’m so sorry one of your Ladies has lost her fight🙏💔

@sellotapechicken I am tired! I've taken to extremely early nights unless out and about (tbf, once I'm back out, I forget the tiredness until I stop).

Medication day today for me. I had to chase it to make sure it was authorised, was told to get bloods done (already done & available to be checked), then when I got there for my late morning appointment they were missing loads off today's list & waiting on pharmacy. Bit of a piss take sometimes really <sigh>. It's not as if it's a surprise...they're the ones who decided 6 weekly, not me!

& I'm expecting to have to do it all again Christmas week - I'm on it with changing my next appt to a phone call that week otherwise I can see me sitting in the chemo suite for hours instead of sorting dd2's birthday on 27th.

In other news, dd1 has been home since Weds for a gig & is working tomorrow. We went for a cocktail after my appointment & wander in Aldi for some of their festive treats 😋. Bought my wrapping paper too...there are currently no gifts to wrap other than a handful of stocking fillers.

How's everyone else doing?

Hey everyone, it's been a while.
My second opinion at the Christie didn't really change anything for me.
Surgery is still off the table and not an option.

I have taken the decision to stop my chemo (at least for now) as it was becoming too much.
At the moment I'm on a recommended 3 month break which is scary as I know the risks.
I'm hoping I will at least start to feel better but so far I still feel like shit.
I'm still sleeping a lot, have no energy and can barely eat.
What's really annoying me is despite my stomach issues meaning I can barely eat and I'm losing weight they still didn't bother to expedite my scan results so im still sat in limbo wondering if this is progression.

On top of all that, I spent last Saturday at the hospital and was diagnosed with a DVT so I'm now having to inject myself twice daily.
Just to add that I wasn't going to bother getting it checked out as I only had a bit of an ache in my calf which felt like a regular muscle ache
I had no redness, no heat and no swelling.
It was ChatGPT that told me I didn't need to experience those things for it to be a clot and I should get it checked immediately.
Thank goodness I did as the clot was already on the move and is sitting behind my knee.

Anyway how is everyone else doing?

@GoldenDog1 gosh that is scary re: the clot, I’m so glad you got checked out when you did. We really do have to be on the ball with our health and act fast. Surely if you are losing weight through not being able to eat, that is a red flag? I hope you will pick up whilst you are off chemo; I don’t know how you do it ( obviously I know why) but it takes its toll mentally and physically doesn’t it? How are all the little ones? I expect they will be getting excited with Christmas soon?

@lucysmam sounds like you are busy busy! How’s DD enjoying university? I bet she’s partying like there’s no tomorrow 🥳🍾🥳 My DD has a boyfriend that she’s smitten with. To the point we have to meet him ( or rather he wants to meet us!) So, off we trek in 3 weeks, down to the SW, to see the Christmas markets, meet Bf and eat Nando’s 😊

@sellotapechicken how’s the recovery going? What an ordeal hey? How’s DH?

@balkanscot are you okay? I do hope so. How’s DS?

@EachandEveryoneare you back on immunotherapy yet? Has the colitis settled?

I’ve just had my 5th out of 6 chemo. My recent scan results showed no new growth between august and October ( the wins are tiny!) I will have another scan sometime in December and also an MRI of my pelvis. God alone knows what happens once no.6 is done ( I dread to think!) 😳 My pain isn’t great and I’m sick of side effects from pain drugs, so I’ve been to see a herbalist. Spent a shit load of money I don’t have and hoping the vile tasting tinctures, work!

I’m just exhausted by everything. I just want to sleep but I can’t I have so many appointments. To top it all off I was sent for a brain scan as I’m getting dizzy spells when I stand up and it turns out I have had a silent stroke! So now I have to go to a stroke clinic and a stroke physiotherapist. I just haven’t got time! The tvn has put a compression bandage on my leg that needs changing weekly. I can’t put a shoe on with it. My groin is leaking like a tap too.

the good news is I start immunotherapy on Monday. I just pray the colitis doesn’t come back.

im going to A Christmas Carol on Saturday at the Barbican I hope it’s stopped raining by then.

@Enigma54 it really does take its toll.
Nearly two years of continuous chemo, I wasn't just suffering physically but mentally too and it was getting harder and harder to drag myself to the chemo chair every week.
Stopping chemotherapy comes with huge risks and I'm just hoping I can at least start to feel better for it.

As for the DVT, I thought I knew what to look out for but I was wrong. Thank goodness for AI on this occasion.

The kids are all great and yes looking forward to Christmas while nanna here sits checking my bank balance at the expense lol

That's really positive news that your scan results are showing no growth.
We take all the wins we can get don't we?
Please let us know how you get on with the herbal stuff.

@EachandEveryone oh I'm sorry to hear you've had a silent stroke on top of everything else you are dealing with.
Good news that you are starting back on your immunotherapy.
Enjoy your show on Saturday.

Hope you all have a lovely Saturday despite the blustery, rainy weather xxx

@Enigma54 So glad your latest scan showed as stable. After all that shit you have been through. Mine in October was shit again, after 2 consecutive fantastic scans that showed shrinkage. This latest shitty one showed that existing liver lesions have got bigger and that there are smaller new ones on the horizon. How, just fucking how????? I have been feeling normal, yet this new shit has been brewing inside my lovely liver. So, that was the end of 8 months of Enhertu. I seem not to be able to get more than 2 good scans in a row, it always goes to shit after the 2nd one.

Now I am on Carboplatin, had my 2nd infusion yesterday (I was on it 5 years ago but in combination with Docetaxel and responded to it, plus I had a good response to Olaparib, so my oncologist thinks I have a good chance of responding to Carbo this time, please, let it be true!!!). Seems a bit more tolerable than Enhertu. I found Enhertu incredibly tough, and it made me put on weight. But I would still have preferred to have stayed on in regardless. Because I seem to be burning through lines of treatment very fast which makes me incredibly worried. Yet I still function as normal, no pain, I can do anything as before, physically the cancer hasn’t had an impact on my day to day life, yet I keep progressing. And I know it can change in an instant, that I become incapacitated by it. This being Christmas time it makes me think if this is the last one for me, also, I am coming up to 3 years since being diagnosed with Stage 4… all this is really messing with my head, despite going to Maggie’s and MacMillan for counselling. And going through it on my own, without my late DH, it is just total and utter shit.

I did go to the cancer assessment unit in mid-September due to fever, it turned out that I had Covid and wasn’t neutropenic!

DS has got a very short fuse at the moment, so is incredibly challenging to parent him but I have no other choice. There have been so many times when I could have just let him get away with it but that would be irresponsible parenting even under my circumstances. But it is very draining doing this all on my own while I am feeling the side effects of chemo and finding out about my shit scan. He has started seeing family support officer from the hospice again, she now comes to his school, I am hoping he has started opening up for a bit.

@GoldenDog1 I hope you being off treatment for a bit will help. Continuous chemo messes up with the strongest of bodies. I know the feeling as when I was on Enhertu (I even had a reduced dose which didn’t do anything) I kept thinking I can’t do this anymore. Keeps us posted re: this and I am sooo glad you went to the hospital for DVT, it most certainly saved your life. I don’t know quite what it takes for scans to be expedited, based on your symptoms you would think they would be pro-active! Keeping my fingers crossed for you.🤞

@EachandEveryone silent stroke??? I am so sorry that you have to deal with this on top of everything else. How long before you see someone at the stroke clinic? Good that immunotherapy is going ahead as planned, let us know how it goes.

@Enigma54 And yes, I still want to shove out of the way all pensioners in the waiting room/chemo ward. Get out of my way, you have had your time and you won’t be able to see you grandchildren grow up, boo-hoo! I won’t be able to see my SON reach 18!!!

I know I am horrible, was never like this pre-stage 4, I fully realise that but something visceral inside of me just takes over. Apologies to anyone on this thread whom I may have offended.

@balkanscot make no apologies for being arsey with pensioners. I am the exact same! One chemo session was full of much older people (I was the youngest at 54!) and I was fuming, seething in-fact. I also have no time for older people with aches and pains, or colleagues who clearly couldn’t give a flying fuck about my shit (it seems). Well, let’s hope cancer doesn’t jump
up and bite them on the arse too!
So yes, I hear you. I have become quite unintentionally bitter and angry.

I also appreciate that solo parenting your DS must be incredibly challenging
( I’m guessing he’s around 13 ( ish) now?) You can only do your best and it’s good that DS has access to a family support worker to ( hopefully ) share his feelings with.

What can I say re:your scan results. I mean why, just why do our bodies do this to us? Let’s hope Carbo does the trick and massacres those lesions!

@EachandEveryonefingers crossed that immunotherapy goes ahead, minus the colitis. Will the groin wound heal, once you are back on the immunotherapy?

@GoldenDog1I know what you mean
about dragging yourself to chemo. It’s mentally and physically exhausting. Hopefully a good break, will help you reset.

Well, today is a right off. Awful diarrhoea and upset tummy. Just got to wait for the oral thrush to start ( that will be Monday ) and to start bleeding ( caused by fuck knows what!)

I’ve aged by about 50 years, no hair, finger nails all breaking off… it’s relentless. Oh well, tomorrow is another day as they say!

@Enigma54 that's so good to see that your scan showed no new growth 🥳. Dd's enjoying uni, and on top of her work! Thanks for asking. She's still scooping up cheap/free gig tickets like nobody's business too, of course 🤣

@EachandEveryone I'm sorry to see about the silent stroke. I didn't know that was a thing & had to google! Is A Christmas Carol today? Enjoy it if it is 🎄.

@GoldenDog1 I hope being off treatment for a while helps you! 18 weeks was hard enough by the end...2 years is a very long time!

@balkanscot you're not horrible. I totally understand those feelings!

I've been very lazy today. Couple of wash loads, jenga-ed all the pots on the draining rack in one go, slept, and painted. All in my pj's! Very much needed slow day.

Had the day from hell. Got out of shower, decided my poor nether regions were so dry and sore, that I would insert an oestrogen pessary. Well, a blood bath immersed! Must have burst a blood vessel or hit the tumour. Thankfully tranexamic acid has started to slow it down. I just want to cry. I don’t want cancer, I don’t want two cancers. I want to give them both to my old horrid selfish mean spirited loudmouthed cow of a next door neighbour ( @balkanscotyou will understand!) Now I feel sick and ache. Fucking hell I hate life. Oh and my pay runs out in 3 weeks!!

Mine stopped in April and it’s been a nightmare since. Fill out the UC forms you might be entitled to something.

tonight I started watching Dying for Sex where she has secondary breast cancer and decides to sleep with loads of blokes as her husband won’t sleep with her since her diagnoses. It’s good but it hits home and we don’t all look like Michelle Williams and rock a pixie cut.

i start immunotherapy tomorrow and i can not waif.

I’m doing ok! Thank you for asking. I’ve had some really really lovely gifts from family and friends and I’m feeling very loved. I’m absolutely cream crackered from doing the square root of fuck all.

DH has started taking Holly to work with him and has been going to try out some dog friendly pubs in Manchester 🤣. I’m just happy she’s out of the house and not howling! She likes brewdog. oh and DH has Covid so he’s been banished to the spare room

how is everyone else doing? @EachandEveryone good luck starting immunotherapy tomorrow. Are you gonna ask for infliximab?

@Enigma54 What a nightmare with the pessary! I am so squeamish I would have fainted (can’t even look when they draw blood via my chest port). And yes, totally understand you wanting to pass this gift of double cancer to your dragon NDN. I also have to urge to shove all the people of a certain age with who park in disabled spaces via Blue Badge, I have one as well and I always feel their eyes on my back as I don’t walk with a stick/there is no physical “evidence” I warrant a BB. At first I would absolutely not use it (I hid it in the glove compartment) but now I am “fuck it”, I have it for a reason and I will use it. I wish I never had it, obviously, but again, fuck it.

I have been medically retired since January 2025 and have a Civil Service pension that pays a small sum every month. I top this up with a monthly pay from 2 of my investments (leftover lump pension sum and late DH pension payout) and a PIP. I am in a very fortunate position and I fully appreciate this, the fact I don’t have to grapple with HMRC and navigate the world of UC. Never in a trillion years would I think I would be leading this kind of life.

Yes, my son is 13.5, so to be alive when he eventually turns 18 is not going to happen. God, how could I be failing him so much by leaving him an orphan???

I am also beginning to get irritated by anyone who tries to get in touch with me and then I have to get back to them. If you are not contacting to tell me my cancer can be cured I DON’T WANT TO KNOW!!!

@EachandEveryone Roll on immunotherapy! I don’t think I could watch that. I change the channel every time there is an advert for any kind of cancer charity, especially Cancer Research where there are pictures of people receiving great news. Can’t bear it. I am a bitterly shrivelled prune.

@lucysmam I have been obsessive about cleaning as it is the only way I feel I can have some control over, since I cannot control the disease. This is still the hardest part of it all, having absolutely fuck all control over what cancer is doing (yes, positive thinking, healthy eating, etc., I can see the holistic benefit but I WANT MY CANCER TO FUCK OFF AND RESPOND TO TREATMENT FO MORE THAN 8 MONTHS AT A TIME!!!).

Sorry about all the caps, I do feel murderous at times and using caps lock is the only way to convey this here.

@sellotapechicken is Holly a French border terrier? She looks adorable. Do you find having a dog helps with your situation? Mu DS is desperate for a cat but I just feel I cannot add a pet into this mix to look after, I can just about take care of DS and myself, I have no spare capacity for anyone else, even a cat.

Yes I asked my consultant last Wednesday and he said fine. I’m trying not to get annoyed but they changed my appointment from 1030 to 1230 so I had to cancel my tvn to change the pot on my leg. And, what do you know it’s now 1400 and none of us have had it. It hasn’t arrived from pharmacy. I’m abit anxious I’m only having Nivolumab and not the other.