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

[SewingBees]

New thread!

I’m not great. The hole in my groin is totally dripping like a tap. No dressing will work for it. I’m wearing nappies on a night to try and catch the gunk. The tvn won’t let me try a bag as she said the position is too awkward. I’m going to see her this afternoon. It stinks as well. I’m waiting for the swab to come back.

ive had no side affects from the immunotherapy which also worries me!

someone just rang my doorbell saying that they were from my surgery and they’ve come to give me my flu and Covid jab. With no notice what so ever so I said no thanks.

@sellotapechicken DS was a daddy’s boy, completely, so I do understand your feelings. He was 10 when DH died and it completely devastated him. I was entering Sainsbury’s this lunchtime and there was a dad with a 2-year old boy, the boy was skipping along and saying “Daddy, daddy, daddy!!!” and it just brought the whole 💩 situation back home.

@EachandEveryone How dispiriting for you, to have this again! Has anyone told you why exactly it happened last time? Maybe this is (in a weird way) related to immunotherapy? Marvellous that these health care professionals think they can just rock up at our door and think they are doing us a favour. I am still debating my jab which is booked for this Saturday. I want to feel a bit normal for a bit before Carboplatin piles on top of me again.

@Enigma54 I was discharged on Friday afternoon with 2 types of antibiotics. When I mentioned this to one of my friends who is a retired nurse, she said for one of them “Pity it will make you feel like 💩”. I thought, meh, what does she know! Turns out she was 100% right. Just as my nausea was stabilising, it totally came back again, due to these awful (also horrendous to swallow) antibiotics. Back to nausea, diarrhoea, plus now I also have the inevitable thrush. Super-duper! I can’t eat anything, really have to force myself to eat. And because of this I feel so pathetically weak. I did manage to be out and about most of this morning (MacMillan counselling followed by oncology massage). Then I had to go food/drinks/fruit shopping and just about expired from exhaustion. About to get back into bed now. Managed a sandwich, some cooked beetroot and am forcing myself to finish a small pot of chocolate mousse. Black thoughts swirling inside my head, too, thinking what if this is beginning of the end????

Hi all - just catching up on everyone’s version of our shitshow. I’m tired, just finished three weeks treatment in London. Sleeping a lot now but also trying to do stuff a little bit each day. Finally told my DD (18) that I’m not going to make it out of here alive. She was remarkably sanguine but is now spending increasing amounts of time at her girlfriends. Can’t say I blame her.

Of course the tvn announced to me that the hole in my groin is because it’s a fungating tumour I’ve googled and scared the life out of me. Only found in late stage cancer etc etc I’m thinking myself is this it? Is this what it looks like. My wound on my leg looks worse than it did last week. I’m sick of it all now. I can hardly walk my leg is so heavy. Anyway I have a cousin coming down and we are going to see a Christmas Carol so that should be nice

@EachandEveryone goodness, this wound in your groin, can’t they do anything until immunotherapy kicks in? This is inhumane for you, having to wear a nappy in bed. Are you worried that the absence of any side effects, means the immunotherapy isn’t working? You had colitis last time didn’t you? You don’t want that again. I hope you enjoy Christmas Carol.

@balkanscot yes those anti biotics can be evil. They all give me the 💩 and 🤮Grim. Thrush is grim too. I get oral thrush from docetaxol; on day 4 religiously. I don’t want it the other end either! I’m sorry you had flashbacks earlier In Sainsbury’s, that must have been very hard to cope with. Try and stay in the” here and now “ Well at least that’s what I keep getting told! Except, how the fuck do you do that when you are treading on the eggshell, called cancer?? It’s not the beginning of the end because that carbo is going to obliterate your tumours.

@Sausagesforever 3 weeks treatment is a long stint, I bet you are exhausted. Yes shit show it all is. It’s unbelievable the things we are having to endure. Your DD is probably trying to process all the information too. Does she have an outlet?

@Enigma54 her best friend lost her mum in year 7 which is why she’s able to cope with it all on a rational level - plus we’ve talked about the possibility from the very beginning & I’ve framed it as “if/when it happens, we’ll all be prepared, it won’t come out the blue, you’ll have lots of people around you supporting you & I’ll be on lots of drugs, it will be part of an inevitable process”. I find myself fluctuating between being desperately sad for her and wanting to protect her & then feeling very selfish & thinking about myself because I know in my heart of hearts she will be okay.

Ffs this is all shit ladies 😥.

@EachandEveryone enjoy A Christmas Carol! I think dd2 would enjoy that at the theatre - I'll see if there's a local production to take her to.

@balkanscot those antibiotics sound positively delightful! I'm just coming to the end of a 3 month course this week. Hopefully my gut will return to normal fairly swiftly.

I have come up in itchy red blotches here and there <sigh>. Fuck knows what they are, but there are at least 5 on my neck, a handful on my shoulders, and a couple on my back. My brain's shouting at me to ring in, at least tomorrow, and try to get them looked at - I don't want to pass anything awful to my pregnant colleague! I thought chickenpox at first, but they're not weepy, or scabbing. Just, well, itchy!! But, thinking about it, I've had this before & no-one was concerned in the slightest when I mentioned them. I just spent a couple of weeks being blotchy & itchy as fuck.

But they might also be nothing & a result of the stupid, sweaty, hot flushes?

Fuck knows 🤷‍♀️. I don't know whether to be concerned or not. I'm more bothered if it's something pass-around-able & not sharing with anyone else.

In other news, Christmas shopping is almost complete for the girls. Tbf, they don't want much. I'm struggling a little bit with motivation to do much else tbh. Just cannot find the go!

Oh, and, dd1's been a dick & skipped class to queue for a concert. She's sulking with me because I told her so 🤷‍♀️.

@Sausagesforever nothing wrong with a sway of emotions. I know my own DD would be okay too. DS is not 18 yet and to me, still a child. It breaks my heart to think of leaving him.

@EachandEveryone how is your wound doing? How are we all doing today? I’m struggling with sickness at the moment. We went to a 50th birthday party yesterday and I had to leave after an hour because it was so busy and I felt like my neck was so vulnerable and I was absolutely exhausted. I’ll pop in and see him today but good lord I feel like I’m so old at the moment.

Starting to feel some of the effects of likely tumours ie bloating I'm also very constipated . Waiting for my appointment with oncologist next week I'm hoping he will start chemo soon.

I think constipation is honestly horrific I know it sounds dramatic but it really is so horrible. When I was recovering from my original surgery I swore by dulcolax suppositories. Grim but they work every time!

I hope they start your chemo soon x

I’m in so much pain - my hip collapsed on me getting out the shower on Wednesday. It started to improve & has gone downhill quite spectacularly. I have to be in London for next two days for routine scans etc so I’ve booked a car to take me & a friend is coming too. Hate the thought that from now on I may be bed bound & in pain. Feeling very sorry for myself which is unlike me.

Oh no! That sounds really horrible. Do you have any kind of outreach you can talk to about pain relief ?

How is everyone getting on?
@EachandEveryone how’s the wound? Any side effects from immunotherapy yet? ( hopefully not).

@GoldenDog1Really hoping you are comfortable and the medics are dealing with your inflammation and fluid round the heart? What’s the plan going forward? X

@Walkingnotrunning1 constipation is the absolute pits. It’s the one thing which stresses the hell out of me. I echo @sellotapechickenre: Dulcolax Hopefully chemo starts again soon?
(obviously you would rather not) How did you find it last time? Was it doable in terms of side effects?

@sellotapechicken Your poor neck. Is it healing well? How do you feel in yourself? Are you still having the “ big surgery” this month?

@Sausagesforever sorry things are tough. It’s a real wake up call when we something scary happens. Is the pain under control now? I do hope so.

I’ve got my final chemo ( of this regime ) on Friday. It’s wiped the floor with me. Haemoglobin has been hanging by a thread and I’m exhausted. Mri this Thursday, CT end of December and I await my fate on January 13 with the shit results.

Take care all 💕

@sellotapechicken I’ve been admitted as I lost the ability to walk due to pain. I was at hospital for routine scans & they took one look at me and said “wheelchair now”. Was admitted yesterday & hoping to get out tomorrow. But until they can control the pain I’m not allowed out. as others have mentioned it’s weird being on a ward with old dying people & im young & have stuff to do & friends to hang out with & not long to live so really don’t have time for random dodgy hip nonsense.

No side effects. Second one on Monday. Tumour is massive I can feel it in my groin. Some of the papers say it does grow initially at the beginning of treatment.

the groin is upsetting me more I’m changing nappies twice a day and it stinks. No dressing works. I feel like it’s the tumour causing it. I’m so despondent as my family are coming to see me this weekend and I’m so limited to what I can do.

i have an oncology appointment at 830 am tomorrow. They haven’t been interested in it before but perhaps now they will.

@Enigma54 I feel stupid complaining when compared to others troubles but it hell nothing is budging. I feel like my poor bowel is going to explode! I have stopped some meds that I was taking for irritation from my bladder which was dehydrating me. I've also got a staph infection in my stent

@Walkingnotrunning1 you may need an enema? Don’t leave it too long before seeking help ( you don’t want an obstruction). Are you passing wind okay?

My Neck is still scabby as fuck! It’s so so grim. I’m not having the surgery at any point soon because they need to figure out why I haemorrhaged so horrifically and it’s a whole thing to figure out where it needs to be done, as the Christie doctors obviously only do this procedure at the Christie because of nhs England funding which is baffling to me. However the icu at the Christie is not remotely set up for a major haemorrhage coming in, it’s more just neutropenic sepsis patients, I need a hospital with a mega icu because of the risk that it happens again as it probably will. So I might have to go to Basingstoke for it which is a bit of a treck !!

@sellotapechicken oh crikey, that’s not good. I guess the priority is to heal and recover from your thyroid surgery? Basingstoke is indeed a trek!

@Walkingnotrunning1any sign of a bowel movement? I do hope so.

@EachandEveryone your groin tumour sounds nasty. Let’s hope the immunotherapy kicks it’s ass and you can get back to some kind of normality.

@Enigma54howre you? Yes recovery is the priority x

@Enigma54 nothing yet I'm in hospital same day assessment hopefully having a obstruction ruled out

Really hope there’s no obstruction. Do keep us updated when you can.

I've been admitted but they don't think obstruction my CRP is raised so maybe Crohn's flare or diverticulitis.

Yes plodding on. Met up
with a couple of colleagues for the first time in ages and thought “ fuck” my life is so so far removed from that of my colleagues. What it is, NOT to have cancer. Must be bloody amazing!