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

[SewingBees]

New thread!

Hope you are okay? Can the hospital help with moving things along?

Has anyone heard from @GoldenDog1? Bit worried.

Goldendog stopped posting on Mumsnet because some idiot 'friend' of hers was stalking her on here.

@Enigma53 I don't think you should post here about stuff that has been shared only in our private Facebook group.

I’ve finally been discharged - herniated disc - need that like a chuffing hole in the head.
on a lot of morphine & completely bedbound - can shuffle to the toilet but that’s all. Never known pain like it.

@Sausagesforever herniated disc sounds awful! I hope morphine is doing its trick. I am dreading the time where I will need opioids as I don’t get along with morphine at all. It makes me feel incredibly weird and I keep hallucinating.

@EachandEveryone How are things? Any luck with the dressings? Who is changing the dressings, district nurses? Any change for the better?

@Enigma54 My scan results will be revealed on 16th January, I can’t even think about it without sending my blood pressure through the roof.

I managed to get Carbo this morning despite my port going all red since they took my bloods on Tuesday. I phoned the cancer treatment helpline, was told not to come in as they didn’t think it was infected, based on me not having shivers/chills/fever/not oozing puss/ or any other liquid out of it/wasn’t hot to touch. Cue this morning Ward senior nurse waving her hands about saying I need antibiotics and won’t get Carbo today. I tried so hard not to burst into tears as I have been feeling very tender emotionally since that hospital admission 2.5 weeks ago. Then advanced nurse specialist looked it over, drew a line around it with a surgical pen and told me if the redness starts creeping outwith the line I will need to phone the helpline. She then OKd Carbo to go ahead.

And to finish this lovely Friday off, I have a completely flat tyre, can’t even drive the car to the garage.Only found out when I tried to drive off to the hospital, had to re-park and abandon that idea and run for the bus! My RAC cover (arranged through my car insurance) is for roadside breakdowns only, not breakdowns at home. Lovely! 😵‍💫🤬 Had to arrange via KwikFit mobile tyre service for tyre to be delivered and fitted in situ next Tuesday. Happy Christmas to me! 🎄So instead of relaxing after coming back home after Carbo I had to spend almost 2 hours going back and forth with RAC, Aviva Zero and KwikFit. It sucks being on your own!

@SewingBees sorry to hear about Goldendog1 being stalker here - despicable behaviour of the so-called “friend”.

I’m no better and the consultant said it’s up to the TVNs to sort it out. It’s horrific even wearing a nappy it needs changing twice a day the secretions can’t be contained. I think it needs a bag. In other news the cancer hasn’t spread but it has grown and that’s not a surprise as the treatment has been on hold. There’s inflammation in my pancreas but nothing to be concerned about

Acities drain yesterday oh my god (nearly 3 l) I feel 100% better today can actually eat and drink shame only NHS food available . I'm going to break out to m&s later

That sounds like pure relief!
Was that the reason for your constipation?
Enjoy M&S 😊

That must feel so much better.

@Enigma54 I don't think it was constipation just my bowel and stomach being pressed on by the fluid

I’ve got the dreaded oral thrush again!
Mouth hurts like hell. So done with cancer, treatment and all it’s shit ☹️

@Enigma54 oh no that sounds awful
I should be discharged tomorrow just the inevitable loonngg wait for TTAS

@Walkingnotrunning1 I am petrified of ascities. So glad you are feeling better.

@Enigma54 Nooo, oral thrush is the pits. I had it while taking antibiotics, vile, vile, vile. Do you have Nystatin to hand? I am absolutely fed up with it all, too. Currently in the throes of side effects: painful muscles, massive fatigue, feeling sooooo grumpy. Still have to parent with all this 💩 going on and I just cannot be arsed anymore. But I have no choice. I want to sleep for the rest of the afternoon but have to ferry DS to taekwondo and back, then tomorrow I have to make sure he gets to the Christmas Market to meet his Young Carers group. He could do all this on his own but not in the depths of Winter when it gets dark at 15:30. CT scan next Tuesday. And I am finding it really challenging doing my weekly Pilates class, can’t wait for it to finish next week. One day at a time, they say. I just want to wallop anyone who comes out with this kind of tripe. 🤬🤬🤬 I don’t want to be on my own and I don’t want to have stage IV on my own and I don’t want to look after my DS on my own. 😭

@EachandEveryone how is the wound? Has it been finally contained?

We just had a harpest play for us on the ward it was a lovely way to break up the afternoon

@balkanscot I hear you and I empathise. I wish you didn’t have to do this on your own, it’s shit shit shit 💩
One day at a time? That’s as bad as
“ stay positive” Currently in my bed sobbing, sore mouth, aching muscles, no taste buds, cancer pain ( oxycodone is now bunging me up!) Made the stupid mistake of going to Chester, could hardly walk with pain and fatigue, then needed loo urgently so mad dash into M&S! Then more muscle aches. If docetaxol hasn’t worked, that’s me done. I can’t do it. Yes I’ve dug out the nystatin.

@EachandEveryone I was also wondering how your wound was? Is it getting any better? I do hope so.

@Walkingnotrunning1I hope will you be discharged tomorrow. Do you feel better now? When does chemo start up again?

Oh and my fucking CT is December 31st! Results on 13th Jan.

My consultant at the Christie called me today to tell me he wanted me to attend his clinic tomorrow morning at 8.30am and to bring someone with me. Happy Christmas 🤦‍♀️

So it looks like I’m too high risk for the big operation and I will need to go to Basingstoke or the royal marsden. Neither of them have agreed to treat me. Scans are stable with no growth of the small tumour in my diaphragm (it’s 1cmx2cm) so they want to park the big op because it’s not grown at all so there’s a lot to take in. I’m a giant risk to operate on and I know that because of the huge haemorrhage but it’s so hard. I hope everyone is doing ok

@sellotapechicken Gosh that is so difficult for you must be difficult to separate surgeon head you and cancer patient you.
I'm still on track for discharge today but no timetable for events had presented itself yet🙄oh how I hate and love discharge day

Yes it is really hard! Especially because I know all the little phrases we use to make patients feel a bit better!

@EachandEveryone how are you doing?

I just want to let you know I will probably be getting rid of social media entirely so maybe we could do a WhatsApp group?

God, I'm so sorry you're all having such a shitty time. It's the fucking pits.

@sellotapechicken I'm ok with a whatsapp group if everyone else is. Sorry about the big op - can the others not be persuaded to treat you?

@Walkingnotrunning1 ascites is awful. Did they discharge you?

I have nothing to report really, other than I am extremely tired, all the bloody time. The SEN child in class is currently quite challenging & I think I need to speak to management about someone else dealing with his erm...difficult moments. I did 5x time out yesterday but he flops to the floor & is difficult to move when he does. I went to bed at 5:30 last night & can feel the effort in my right shoulder/breast area today. They're not going to like it but it's too much for me. Thankfully, my lovely colleagues always appear to help me but I think a fit note (i.e. not fit for moving a small child around the place) may be the way to go, so it's documented.

Anyone up to anything over the weekend? Dd1's home for Christmas, but working all she can. I'm off to a very local Christmas market with dd2 for a wander for a few hours 😊.

@lucysmam acities is so painful of course by the time they decided to that they could drain them it was Friday so nothing could be done over the weekend. So last weekend was a bit of a lost weekend of pain and morphine, I had some odd dreams!.I couldn't believe how different I felt as soon as the drain began ,such relief.
I do think there should be a league table though there are so few wins in cancer a top of the pops style aciities drain would be fun . Coming in at number 10 this week with 2.7ltrs.@Walkingnotrunning1
Great admiration for your job @lucymam I don't know if I could do it x

Yes, the relief! I remember laying & watching myself deflate too - quite surreal! I think I had 13L the first time - it was an awful lot. I love my job mostly, just sometimes I question whether management actually think through their decisions properly before assigning classrooms. Or whether it's "that'll do because someone else will magically appear to help".