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

[SewingBees]

New thread!

@SewingBees being filleted like a fish comes to mind. But it’s a real consideration. The total hysterectomy was one thing, but this, it would feel like a complete violation of woman hood ( or does that sound dramatic?) I don’t know. But that’s where cancer has set up camp.

No I agree with you 100%. I’ve had counselling to try and figure out how I feel about having the mega surgery in December. I still don’t know. I agree it feels like a violation of womanhood

I know what you mean.
Partner and I have zero intimacy anyway. How can we, with a fucking sarcoma in the mix? It’s like a bomb waiting to go off!

No I completely get you. Thankfully DH is really understanding and empathetic, he’s become so supportive since my diagnosis and I’m so grateful because the man he was when I married him would not have coped with any of this at all. We've had counselling where we were completely honest and I said that the way he was before I had cancer was to put his head in the sand and ignore the fact it’s happening and then making me feel bad for needing him there with me / for me (we had a still birth at 26 weeks in 2017) and he made me feel so awful for needing him because he compartmentalised me and the baby off from work so it was absolutely hideous. So we’ve learnt from that, he has subsequently had an autism diagnosis and that has helped me so much because now I understand why his responses have been so absolutely shit.

So now when we have had bad results or whatever to deal with I tell his family (usually) and then he also gets support from his family. I didn’t know he hadn’t told his family what was going on and I went absolutely feral at him this week. I’m not proud of my response but it is what it is.

Im back at work 16 hours a week now, but if you’re ever in the hospital alone just message and if I’m around I’ll come and see you. I’m so sorry it’s all gone to shit

Also intimacy can be more than sex. I know that the maggies centre at the Christie do lots of workshops like how to be intimate without actual sex, appreciate that might be the last thing you want but they also do workshops on dealing with stress (lol), free massage, reflexology, acupuncture or reiki, they also do benefits checking so you’re claiming everything you’re eligible for, and they also run a sarcoma group once or twice a month where you can meet other patients etc. it’s all free

Sorry didn’t mean to kill the thread 🤣

I’ve revived it!

You’ve had a rough time and life really is a crock of shit at times. I’m glad your husband is a new supportive man. Mutual support in a relationship is partly what helps cements things together ( I think!)

Are the 16 hours you work, based at The Christie or Macclesfield? How’s that going?

I will definitely check out Maggies. I’ve read about all that they do and it’s away from the hustle and bustle of tht hospital!

I had a lot of support from Maggie's after my stage 4 diagnosis. Advice about the medication I was being put on and how to request a change of oncologist. Support to apply for PIP and some counselling. I also attended a regular breast cancer support session but I found it a bit too much for my needs and the times clashed with work. But it's a brilliant charity and can be really helpful. I found them much better than MacMillan.

I didn't ask for any advice about sex or intimacy though, which is not surprising given the state of my marriage. And my back 😂

It’s at the Christie at Macclesfield. Although I’m half tempted to take health retirement and do aesthetics instead. I’m beyond exhausted

Ah I see. I go to the main hospital in Didsbury.

Can you take a side ways step, career wise?

I think I can but I need to have a good think! How’re you doing ?

Definitely have a good think, there must be plenty of options available to you?
Not bad this end. Now debating my life and what the fuck is going to happen going forward. The new school term commences next week and all my colleagues will return to the hamster wheel, whist I carry on with this shit. No way can I work on docetaxol!

Well, I think I need to dash dd's uni dreams. She's entitled to just over half the loan their calculator said she should get (around 6k instead of 11k). There is no way we can find enough to move and pay towards her living expenses at the same time.

She is going to ring and query why so low when their calculator is based off mine & dad's earnings for 23/24 as well as their calculation.

I foresee lots of tears 😥

@lucysmam Does that mean she won't be able to go at all? Or just that her circumstances will be different to what she thought?

@SewingBees probably not at all - 6k won't even cover her halls for the year never mind money to actually live on. She'd worked out she'd have about £45 a week for everything else with the 11k ish their calculator said she was entitled to. There just isn't the money available to cover the shortfall. & because she'll only get 6k ish, she's not likely to be entitled to any grants or bursaries.

I honestly do not have a clue what to do with this now.

@lucysmam double check the figures. DD was forecast half the full loan for her first year ( based on mine and her dad’s income). We are piss poor, so phoned student loans company and they had messed up their figures. DD was finally awarded almost full loan. She also gets a bursary for living in a demographic where few young people go to university.

Check and recheck 🤞🤞🤞🤞

Unless she can find the same course in a cheaper area? DD is in Bath ( fucking expensive) but her course is only offered at a handful of universities.

Please recheck my niece was the same. Her dad a teacher mum part time admin. She got the full loan in the end and with her pub job was fine I think her rent was £850. Could she not claim more as you are separated. I think you might have to do the ringing around. Look up bursaries as well my other niece gets a thousand a term. I would be so upset for her especially as she needs to be in London. I’m crossing everything for her. Has her dad got a really good job?

@Enigma53 yep, that's the plan. Reassuring to see you had the same trouble (although utterly shitty that yet another govt dept cannot just get things right first time!).

I've run their calculator tool for "living at home" - she'd be entitled to around 7k according to that. And for "not living at home and studying outside of London" - she'd be entitled to around 8.5k. So none of their suggested entitlements are even close to the 6k they've said she can have 🙄.

Fucks sake. Just something else to stress about.

It’s an extra couple of grand for London. It’s amazing how tight they become. She will be eating chickpeas for the next three years.

It says if living away from parents in London, the max is £ 13,762.

Ladies, this is so reassuring, thank you!

@EachandEveryone yes, I probably will, I had to sit with her to get the uni to talk her through sorting the Microsoft Authenticator - she kept taking their "ok we've fixed it" and waiting til the next day to tell me it still wasn't sorted. One call from me that "you need to talk her through it because she'll be homeless if it doesn't work to pay for accommodation" and it's sorted 🙄.

Dad drives forklifts - nothing fancy.

I will look up bursaries, I didn't think she'd be entitled to anything else!

It's tomorrow's top job. Would have been today's but the email arrived as she was putting her work boots on to leave the house. We'll have to do it before we leave for Manchester, or find a quiet corner somewhere there. Signal's dreadful between here and Manchester or we could do it on the train.

@Enigma54 (are you 54 now?) based on our income, the calculator said she should get approx 11,877. She'd worked out how much on rent & was working on having around £40pw, plus a small top up and her phone paid for.

whats in Manchester? My two nieces live there and are paying £900 each for a two bedroomed flat!!! It’s London prices but without the extra pay. God I wonder if the dad had done loads of over time? Can’t you say u aren’t together and u are the breadwinner. Or when u are on the phone play the c card Im afraid I do that more than I should

We're off to another gig in Manchester - three very small artists playing the Skatepark.

No, not much overtime to be had at this place. He did a bit at Christmas, and a few weeks ago when they moved location. I've seen his p60 this morning when we double checked his earnings for the 23/24 tax year they base it off.

Would playing the card make a difference I wonder 🤔.