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

[SewingBees]

New thread!

Yep,bloody awful isn’t it.

How's everyone doing?

I'm celebrating getting to the end of the school year having had just 1 week off (when I had some horrible flu/covid thing around Christmas) 🥳.

Definitely time for some rest now though & time with my own children. Dd2 has asked for a day out in York on Friday, so we're doing that. I'll check in on lumpectomy friend tomorrow over a brew, but nothing strenuous.

Any news about uni or is she taking the year off? I’m just waiting for hospital transport to take me back from immunotherapy. I’m going to ignore that lump as I’ve got all my scans end of next week. I’m going to Green Man in Wales in three weeks the day after my next immunotherapy! I’ve never been to Wales before. The line up is abit obscure you will know more bands then I do 😀

No, she's taking the year off. She's decided she's more interested in music than just as a hobby so is looking into degrees focused on that.

I'd go for Wet Leg, Gurriers, Los Campesinos and Wunderhorse (was gutted they pulled out of Trnsmt), and see who else I could squeeze in. Dd would want to see Kneecap & English Teacher too but I'm not as fussed about either of them. It is quite an obscure lineup! Looks fun - right up my street!

Yes and the comedy tent looks good. Haven’t Leeds got a good music dept? Good for her to follow her passion. She might have to come to that London though 😀 . I’ve had my immunotherapy today my thyroid levels are quite bizarre but I’m blaming it on my ten week hospital admission when the nurses wouldn’t give me my thyroxine separately or let me use my own at the right time like I have for the last ten years. We are never listened to.

I wondered if I could join you? I’ve been vaguely following posts but didn’t feel mentally ready until now. I’m early 50’s, normal mammogram 11 months ago but it’s been discovered I have a fast growing metastatic breast cancer (Grade 2/3 IDC) with it in my axillary, cervical, mediastinal, pericardial lymph nodes and lytic lesions in my sternum. Treatment is targeted therapy (Ribociclib) with a view to eventual mastectomy and possibly chemo, it is a palliative care plan.
It’s been 4/5 months since my initial visit to the GP to now being on my second month of Ribo, and I don’t recognise myself mentally or physically anymore. Very tired, in pain, puffed up from my inflamed lymph nodes around my neck and collarbones and just struggling still to accept this is my new normal. Even before being given Ribociclib I was terrified at how quickly my body was succumbing to what was initially a small lump that I thought was a cyst and was too busy to get checked. This is such a shit disease to have and I’m exhausted from having to be “brave” about it.

On the bright side I have had many offers of help some from unexpected people and I have found the MacMillan buddy system to be great too.

Hopefully I have found my people here, also I believe there is a Facebook group too?

@PrincessFluffyPants welcome to our little group! But sorry you find yourself here. It is shitty, although sounds like you have a secure plan in place. Iirc, Ribo works similarly to the Abemaciclib I take. You certainly don't have to be brave with us - rant, cry, smash things up - whatever helps, we'll be here!

What's the buddy system? I'm not aware of that one.

If you PM me your name, I can add you on fb - we're not incredibly active on there but it keeps us informed.

@EachandEveryone we were discussing Leeds the other day - I'm not certain but think theirs is the course that's not quite what she's after. She's at work at the mo so can't even ask & refresh my memory 🙄. Tbf, she'd happily study in London.

She does need to crack on with saving & giving me a list of <ahem> essentials though. So far, she has £20 ish saved, a list that says
-pan
-cheese grater
And a bloody dream 🤣

Actually, speaking of Leeds, we're considering resale for the Friday of the festival 🤔. I have my Denosumab booked in the morning so we'd probably go straight after that.

Thank you! I will PM you.

@lucysmamit seems I can’t PM you. Think I may need the premier membership? Money is tight for us so I don’t want to buy that but it’s okay, I will hang around here.

Let me try, I don't pay & can pm!

Thank you, I’ve managed to message you, I haven’t sent a message on here in 6 years and had forgotten how to do it.

@PrincessFluffyPants Welcome. I am also on ribociclib, I have breast cancer with mets to my spine. I've just been zooming around IKEA in my wheelchair and I can't say I recognise myself any more.

A pan, a cheese grater, and a dream. I think we've got our next thread title 😂

I don't normally drink iced coffee but I needed to take some painkillers so treated myself to one of these Tiramisu Cream Iced Oat Shaken Espressos. Fuck me, it's gorgeous! www.starbucks.co.uk/menu/product/363826

I’ve spent the last hour clambering around the pond in my muck boots cutting back brambles and trying not to fall in. It felt really good to have a spurt of energy and get the job done, lots of rat holes!
Settled down now with a glass of water (healthy) and a giant toblerone (tasty!). Knitting on my knee, football on and hoping my dog doesn’t bring any baby rats in to hide under his blankets.

Thank you for the warm welcome.

@SewingBees that does sound tasty! I'll have to try it next time I'm in town. I'm not usually one for iced coffee either.

@PrincessFluffyPants I spent an hour in our garden earlier too - broke the rake 🤣🙄. I was going to start a new book but doom scrolled tiktok instead while eating some of a rather yummy box of seashell chocs gifted by a colleague yesterday. There's always tomorrow for the book...and some painting...and visiting lumpectomy friend...maybe a spot more decluttering 🤔. I do like to be busy.

Shit sorry! I’ve been enjoying my birthday weekend far too much I totally forgot to tell you what DH said

you don’t need to allow access unless you’ve had reasonable notice. Also you don’t have to move out at the end of the tenancy because it just rolls onto a monthly thing. You can access legal aid because of your cancer status and if you want help from the council to be housed you need to stay in the house til the court order is in place. Courts are running about 6 months behind so earliest you’d be forced out the house in Jan

@PrincessFluffyPants welcome to the lovely club no one wants to be part of, but we’re nice and friendly here!

I treated myself to an ‘Açai bowl’ today and looked at eternity rings (girl can dream)! What do you guys think
of these ? I like the first 2 because they’ve got bees and I love bees, I like the rain rings because they’re different, the last one is welsh and so am I 🤣 and the last one is very sparkly 🤣

Oops added a photo of the wrong thing!

@sellotapechicken I am the least sparkly person on the planet but I LOVE other people’s jewellery. My first thought was why do you have to choose just one, buy them all 😀 I have a pair of tiny bumble bee earrings and when I wear them I quite often get compliments, they are very charming though. I would be over the moon to own Welsh gold and the ring is such a classic style, and the rain dance ones are really pretty, so yes, buy them all!

@SewingBeescould I pick your brain about the ribo? My first cycle wasn’t how I thought it would be, I expected side effects so, sore mouth, nausea, tiredness, +5kg in weight (but presumably that may be the letrozole that I’m also taking). It was fairly gruelling and it got worse over the weeks, especially my mouth, so I was relieved when the “free” week came, I thought I would spring back within a day or so but it was the worst. I had developed neutrapenia and I spent most of the week wiped out on the sofa and sleeping instead of being the social butterfly that I was expecting to be. Panicked as the breast nurse said that they would delay or reduce the dosage but as it was, my lovely oncologist gave the go ahead again. Restarted on Tuesday, wiped out again yesterday (Weds) apart from a burst of energy for an hour in the early evening. What I’m asking is, if you haven’t got bored of me already, do you find your “free” week is the worst week but gives you enough time to recuperate to start the cycle again or do you just get progressively more tired with less time to get better each time?

My brain is whirring as we had news that one of our friends had died in a traffic accident yesterday. He was an absolute knobhead sometimes but would always be the first to give help if anyone needed it. Would give the biggest, lift you off your feet, bear hugs. Last time I saw him I told him off for squishing me too much as it hurt my chest and boob. Our mutual friend is coming to see me in a few hours to see how we can best support his partner and daughter. It was a single vehicle accident and I’m verging on angry that he may have done something to cause his own death when life is so very precious. I would never say that out loud to our mutual friends but I think I can say that here.

@PrincessFluffyPants You can say anything here. I too would be angry about your friend if he took his own life, but on the other hand I am of the strong opinion that if someone really doesn't want to live anymore then it's their choice. My husband has been suicidal many times, and here I am fighting as hard as I can to stay alive. You could argue though that he has also spent years fighting his depression and trying to stay alive.

My experience of ribociclib is different to yours as my side effects are very manageable. I get a mildly sore mouth, my skin gets dry and falls off 🤢 and takes a long time to heal, I lose my appetite a little for a few days, but mostly I feel ok. So the week 'off' isn't very much different. If this round is hard again for you then I think you need to speak to your oncologist about reducing your dose or trying a different drug. There are 2 other drugs in the same family - palbociclib and abemaciclib. Ribociclib is the newest and therefore considered the best, but my mum has been on palbociclib for ages and it's working for her.

I had to go back to the district nurse yesterday to get the last bits of my stitches out. The one I saw on Monday did a half arsed job and left a load of bits behind. I can still feel some funny lumps so I'm not sure she's got them all this time even, but I can't see to check.

I'm struggling with work a bit, just not very motivated. What I do is important (to me at least) and has the potential to do good for our world (environmental improvements) but I'm just tired of how complicated it is to get stuff done. I'm working short hours so I'm not in an office chair all day but even then I'm not very motivated. I'm hoping my mojo comes back after a 2 week holiday later in the summer. North Wales, haven't been there in years but have very happy memories of annual holidays there as a child. I'm hoping my daughter enjoys it as much as I used to. We're going up Snowdon on the train - the only way I'll get to see mountaintop views nowadays. I used to be very scornful of people who took the 'easy option' of the train. Well, life has shown me hasn't it.

@lucysmam I used the Macmillan buddy service too, you get paired up with a volunteer who is also a cancer sufferer and you get 6 calls with them to just chat and rant. It could be any gender or age, but you can make requests. I got paired up with a fab girl with BC who was around my age, it was just amazing to hear all my own feelings and emotions replicated and we had so many good chats. We actually ended up breaking the rules and staying in touch and are now in contact every few weeks. Well worth using!