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

[SewingBees]

New thread!

Thanks @AGreatUsername , certainly one to remember is available then! I had no idea it even existed.

You know what? I agree! I think I’ll get 2 this year and 2 next year. Life is too short to not have nice treats !! 🥰

DH had his wedding ring cut off on Saturday as he’s put on about 3 stone in the 9 years we’ve been married. Hes gone from 7 stone to 11 stone, and his ring was so tight I was worried it would cut off blood circulation! So we had it cut off and resized, I picked it up today. I know he will find this as funny as I do!

If you can’t read it, it says ‘put it back on’ 🤣🤣 true love

@sellotapechicken was that intentional? How funny 🤣

Haha yes it’s an inside joke 🤣 he loves it

How is everyone?

@sellotapechickenall okay here, it’s just been a usual day for me, there’s several events this weekend fairly locally so I’ve been looking at them all trying to work out which one will be less tiring for me to go to. Looking forward to getting out of the house/village.

What does everyone else have planned?

Back at a&e for me. Decreased wee output and got some weird “stuff” coming from where it shouldn’t. I seriously can’t see a way out of this shit now!

Sending a handhold, hopefully you aren’t in too much pain and they can work their magic to flush it all out and get you back home.

Aw @Enigma53 you're going through it at the moment 😥 How useful have they been at A&E?

@PrincessFluffyPants what events are there?

We're just in from a day out in York. Well, me and dd2. Dd1 is at work. She made me go up Clifford's Tower! Spiral staircases are definitely not where it's at for coming back down. I was fine going up...get to coming back down & it took me a good ten mins to psych myself up to go down them 🤣🙈. Nice wander in the Castle Museum too - their tickets are valid for 12 months so we'll make use of them! And dd2 came home with a fresh belly button piercing...no idea who told her she could do that? I did ring dad to ask if he was ok with it first though! I'm not a total dick.

Tomorrow is taken up with yet more repairs to this place <BIG SIGH>. However, landlord has "booked" 8am - 12noon. Come 12 noon, whoever is here is being told to sling their hook! I need to go to town for birthday cards with the girls.

Oh no! You really are going through it at the moment! If you want a visitor just holler !!

@lucysmam i thought you were at Tramline?

@EachandEveryone no, we didn't book Tramlines this year. Considering Leeds if we can get cheap resale.

Contractor is half an hour late so far...so wanted my Saturday morning wasted by sitting around. Could have been asleep still ffs 😡

i have a new carer my 8 weeks free was up so they put me straight onto the council one without giving me a financial assessment. There is no way I’m paying £250 for this. She made me a cup of tea even though I said do thst at the end. It was a nice cup of tea but she then sat on the sofa and watched me drink it! I don’t know why these people apply for the jobs and why they don’t seem to be training them. I said excuse me there are things you could be doing while I’m now sat here. I was fuming. I’m going to ring the council Monday.

Maybe she was saving her energy to spring into action in case you needed your chin wiping or something 🙄 Was she quite young? I have found that it’s usually younger people (and my DH!) who haven’t learnt the fine art of multitasking. Will you get another visit later today? Hopefully the next visit will be more productive.

I am finally in a position to check in here again after a while! Mentally I have been all over the place ever since Olaparib had stopped working (after only 8 months) in January. I have since been on Enhertu (luckily I am in Scotland where Enhertu has been approved by NHS Scotland), have had 2 scans since and it seems to be doing its job: hepatic stability including some reduction and reduction in lymph nodes. It is just what I need, I have had such inconsistent scans and Enhertu is my 5th line of treatment in 2.5 years. Feels like I am riding in the last chance saloon, hoping Enhertu gives me a few more positive scans.

Make no mistake, Enhertu is brutal in its own right, and I have been suffering with side effects left, right & centre, including gastro/digestive issues, hair thinning, my vision is deteriorating (everything seems out of focus), steroids made me put on weight (have gone up a dress size which shouldn’t really matter but it fucking does), and my steroid moon face comes to the fore in the first week after treatment.

BUT… I am willing to put up with all of the above in order to prolong my life as longs as possible. I have been feeling like most of you here, in terms of older people in waiting rooms and in general, I just want to shove them aside and tell them they have had their time and have brought up their children, while I won’t see my son reach 18 (which will make him an orphan - for those who are new here my DH died 2.5 years ago from glioblastoma - brain tumour). There is this deep seated resentment towards anyone old (including my own mum who is 89) which keeps on lingering no matter what.

i sobbed when I heard about @RedRosesPinkLilies and others whom this wretched disease caught up with in my absence, it just brings back home the inevitable conclusion. And that is brutal. I also got so, so upset over the death of Sophie Busson, I have been following her Instagram account as she had been diagnosed with secondary BC at the same time as me, also had liver mets like me, she was so much younger than me, and her 1st line of treatment had worked for so much longer than mine (same hormone based treatment). And all of a sudden she had deteriorated so much, her liver had failed, and she entered hospice care. Died a week ago after 2 months in hospice. Brings back the reality of how quickly things can flip over. I don’t know if I will ever find peace with the fact that I will eventually come to the end of the line as well. I feel I will be totally undignified and will be scrambling for anything and everything to save me, rather than say just finish me off.

@Enigma53 How are things at the moment? I have been relating to your thoughts a lot, just didn’t have the energy mentally to put them all down here until now. Sending love and mental strength to all of you here.

It’s Saturday and 2pm, we haven’t been anywhere “special” yet. This happens pretty much every weekend. I find a variety of things we can go to/do, DH and I agree it looks good, I kid myself they are do-able and say let’s see how we both feel on the day (DH has his own health issues plus he’s knackered from his week’s work) and we hardly ever go anywhere. Today we took the dog to the dog fields for him to have an off lead run (sight hound with zero recall when small furries are around), we came home, had breakfast, I plonked on the sofa for a quick breather/knitting as health wise I woke up in a fair amount of pain which isn’t usually a good sign for the rest of the day. My sofa plonking DH took as a sign to spend 10 minutes snoozing, a discussion and planning of all the outstanding DIY projects followed, the tape measure and a ladder came out so I was hopeful that at least the day wouldn’t be wasted, I gave instructions of what he could reach down from the mezzanine for me, but now he’s in the other room strumming his guitar. Ho hum, there is always tomorrow I suppose. I think I’m the weakest link here because the minute I say I’m tired or short of breath it’s like giving permission for both of us to just not do anything at all.

On the bright side, my eldest son has messaged to say he and my Mum are travelling down to visit at the end of August, it will be great to see him. We usually drive up there three or four times a year but we haven’t been since January. Middle son is planning to come in September. No plans yet from the youngest but he’s in love so all his plans revolve around his girlfriend still.

Hoping you all have a pain-free and productive weekend.

@balkanscot I’ve just read your post, I’m so sad/angry for you. I hope your treatment continues to work. I followed Sophie for a little while, I was shocked to see she had died. A little bit like you regarding the much older generation but also I see babies and think it’s their time now and I will be making room for them. I said that to my friend and she cried when I thought she might understand. It’s a shit disease to have and we are so very desperate.

@balkanscot I sincerely hope you get lots and lots of time with enhurtu. You
deserve it more than any. I’ve had some horrific side effects from docetaxol
( currently cutting off pieces of dead peeling skin on my fingers 🤮

I’m with you re: attitude towards the older generation. A&E last night was full of them, moaning and groaning about the wait, the strikes, the food blah blah. Then the drug dependent people stroll in, disrupting my peace. And so it goes on. Pure unadulterated resentment!!

Yes, in a shit place mentally right now. All I need is for the fucking BC to wake up and I’m screwed! Literally living hour to hour. Will have to call oncology next week to inform them of this new bleeding symptom. Truth is, I’m terrified!

Love to all, I hope you are all coping in your own way. If you are managing to get out and about, even better, enjoy! 🌼💕

@balkanscot I was thinking about you the other day and wondering.... So good to hear from you and that you have a working treatment, though the side effects sound pretty awful. I often think of your son too and wonder how much time you'll have with him, I think he's about the same age as my daughter. IIRC you plan for him to live with your husband's brother and wife when your time comes? I do really hope that's a long way away. How is he coping with things?

I've had a burst of energy, thanks to my daughter being back from staying with my in laws. So good to have her around, it gives me a reason to keep going. Today we were up early and the first customers in IKEA, changing a ridiculously long curtain pole I bought the other day. That was a brain fart moment. My mum's coming to stay for a night next week and I've been trying to make the spare room more homely for her with blackout curtains so she's not woken at 5am.

I've got a chicken in the oven and enjoying the dogs wandering in and out from the garden as they please.

I just can’t be bothered to turn the oven on! I can’t remember the last time I cooked. I suppose that comes with living alone. I eat sandwiches, cereals and ready meals. Or uber. I was never like this. I have six bottles of wine and I often think if only I could open one and just chill in front of the telly but I never fancy it when the time comes.

I have the runs terribly since my immunotherapy on Tuesday. I darent tell my oncologist incase he changes something. It’s ridiculous really. I’ve read mixed advice on the internet some say take immodium and others say you must tell your oncologist straight away. Well, I’m not going to bother him on the weekend and I think I will take the immodium.

ive started a thriller Dept.Q and it’s really very good. I haven’t watched this kind of show for a couple of years I’ve only been able to watch fluffy things so I’m quite happy with that.

@EachandEveryone Just ensure you don’t get dehydrated. When I was neutropenic a couple of weeks ago, I dehydrated quickly from runs and vomiting and ended up hooked up to bags and bags of fluids. Drink plenty!

Yes I have bottles of water in the fridge. I just want a simple life, going to work every day and coming home to my cats and having a glass of wine 😟 I hate this!

I know what you mean.
My life and appearance has changed dramatically in the last 6 months. Just hospital, appointments, my bed, sick bowl no hair, peeling skin, nausea, now bleeding. I mean WTAF!😱 I just want my boring little life back, nothing more. No, that’s WAY too much to ask for!

@balkanscot so very good to see you, and to read that the Enhertu is working for you!

@EachandEveryone I feel the same re cooking - it's such a chore lately! I did have a lightbulb moment this evening & use the air fryer to cook several (small, defrosted) chicken breasts in around 13 mins - long enough to cut some salad and get wraps/other toppings out. Not sure what I'll do in it next - probably not tomorrow's gammon 🤔. I like a glass of wine - I'm 100% certain I shouldn't drink as much as I do but 🤷‍♀️. Like I tell anyone who comments on my enjoyment of a glass or two most evenings...I highly doubt the alcohol will get me first.

@PrincessFluffyPants I tend to find that if I stop, everyone else stops to do their own thing. I have to be the one to say "no, I'm ok to do X" fun thing/walk round a city all day/camp festival barrier in 30° heat, or we'd do bugger all.

Speaking of camping barricade - we've booked to see Keo (they have 6 songs, veery new to releasing their music) & Gurriers (think Kneecap but not quite) next month. They're both support for Martial Arts at the Skatepark in Manchester. Gurriers barrier was brutal last time we saw them - how I maintained an upright position I do not know! Dd wants to see if we can get barrier again for those two...then drop back ready to get the 2nd to last train into Sheffield, then last train from there back to home. I hope the Skatepark is where we think it is, ten mins walk out the back of Piccadilly station!

@SewingBees how's your back? Did you seriously go to Ikea and just exchange a curtain pole?? You're a better woman than me!

LL's mate turned up to paint this morning...late. That's a story in itself!