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

1000 replies

SewingBees · 24/06/2025 15:08

New thread!

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EachandEveryone · 28/08/2025 21:36

Well you haven’t been on full pay have you? You are emotionally and physically struggling with the numbers and can they reassess as you feel like you may have made a mistake. I do it all the time to get good seats 😀😀 help on the train etc etc it’s not like it’s a lie.

EachandEveryone · 28/08/2025 21:38

I have friends who pay £400 a month to their dc but my sister has four and three at uni at the same time! There was no way she could give them a penny appart from a Tesco shop and they all managed I remember my niece three years ago and she deffo got 13 grand

Enigma54 · 28/08/2025 21:56

lucysmam · 28/08/2025 21:17

@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.

Yes I’m 54.
I wonder if you can base the calculation on your income only? ( or is that fraud)

DD paid £200 per week for Halls in Bath. Then £550 for a room in a shared house. Next year, it will be £650 for a shared flat.

Is £11 877 enough for London?
She can get a job, I expect there will be loads in London.

Enigma54 · 28/08/2025 23:20

Actually DD will be paying £750 pm next year (£80 bills). It’s expensive!

EachandEveryone · 28/08/2025 23:26

That’s London prices and she will get extra which seems unfair when you think other cities are just as expensive. My cousin who was divorced went on her salary only I don’t know if it’s fraud at all. Anyway I’m pretty sure they are wrong try not to worry. Loads of jobs in London and even in Wembley they have the big shopping outlets plus bars she will easily pick something up.

Enigma54 · 29/08/2025 10:33

@lucysmam is DD going to uni this September or next year?

EachandEveryone · 29/08/2025 11:45

This I think

Enigma54 · 29/08/2025 15:26

I really want to go back to work next week for some normality. This is just shit.

SewingBees · 29/08/2025 15:41

My positive news today is not only did I walk the dog quite a long way today, but I've just managed to get back on my bike too. It's an e-bike I bought (at great expense) to get back in to biking after my Stage 1 treatment. It has been barely used, so I'm really pleased that I'm now able to use it. I just need to keep it up because it'll be great for my fitness and hopefully a bit of weight loss.

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EachandEveryone · 29/08/2025 16:34

Oh that’s fabulous news!! I’m still walking with a stick I have a numbness in my leg which I think is due to my vascular op. I really need to crack on with my physio. My friend came around and washed my hair for me. I can’t wait for the day I can get a shower.

Tomorrow we have cold play and my friend is driving. A couple are coming to me before hand. I’m not very good at letting people into my flat as it’s not like their big houses! I’ve ordered some starters from the local Indian and I might even have a little drink.

SewingBees · 30/08/2025 15:54

@EachandEveryone I hope.you have a lovely time today, you deserve it. I'm sure your friends won't be judging your flat.

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EachandEveryone · 31/08/2025 01:33

Oh it was an incredible show the production was amazing. We never stopped dancing I will pay for it tomorrow. He seems such a lovely bloke.

it was so, so nice to put some music on and get ready to go out on a Saturday night. It made me feel young again.

me and my friend sobbed during Fix You . She’s the one that came to me when I was bleeding out and she’s having a terrible time over it and I haven’t cried at all throughout this journey we hung on to each other. It was probably therapeutic.

EachandEveryone · 31/08/2025 14:07

@lucysmam i was thinking of your daughter the accessibility team were fantastic as soon as they saw me they got me a chair and took me right to my seat. I talked to them and they were all at uni. Said you apply direct to Wembley and they do get to see the gigs! Also the student accomodation looks fab.

SewingBees · 03/09/2025 20:05

How's everyone?

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Enigma54 · 03/09/2025 21:35

Plodding on this end @SewingBees
SSP running out. Time to claim ESA. All pay runs out in December and I’m no closer to shrinking this fucking tumour.

I expect you are all doing better xx

EachandEveryone · 03/09/2025 22:06

My ESA has just finished boy am I feeling it already and it’s only the beginning of the month. The bills are all paid at least. It’s my birthday on Saturday and I’m going home on the train. I don’t know what I was thinking about really I’ll never beable to wheel a case and use my walking stick. I guess once I’m on the tube it will be a straight run.

the insomnia is real. I long for one good nights sleep and to jump out of bed ready for the day. However my leg is still killing me the nerve pain is horrible.

gosh I sound like such a miserable cow 😀

Enigma54 · 03/09/2025 22:15

How has your esa run out @AGreatUsername is it only for a short time? Or do you mean your SSP? God it’s all a nightmare isn’t it? Have you got adequate pain relief?

Enigma54 · 03/09/2025 22:19

Sorry meant @EachandEveryone🙄

EachandEveryone · 03/09/2025 22:20

It’s £64 every two weeks? Yes it runs out I think after 26 weeks.

EachandEveryone · 03/09/2025 22:20

If you haven’t got any significant savings have u tried UC?

Enigma54 · 03/09/2025 22:27

Mmm.. MacMillan said £94 a week for the first 13 weeks and then £140 a week. That’s new style ESA and being in the support group. No, I have some money in a stocks and shares isa, so not entitled to UC.

EachandEveryone · 03/09/2025 23:36

Oh that sounds like something different to what I had although it was called esa as well. It’s just horrible how much money cancer takes up. Have you at least got free travel? I got the forms for cheap taxis but they wanted too much paper work off me so I gave up

PrincessFluffyPants · 04/09/2025 09:07

Enigma54 · 03/09/2025 21:35

Plodding on this end @SewingBees
SSP running out. Time to claim ESA. All pay runs out in December and I’m no closer to shrinking this fucking tumour.

I expect you are all doing better xx

I don't want to put the wind up you but claim for ESA as soon as you can. I started my claim mid June and I've only just had my first payment (back dated) on the last week of August so effectively have had no income for all that time. I phoned them after 4 weeks as I thought I must have messed up my claim somehow but was assured I was in the system and there was a back log of around 10 weeks. I asked what do people do regarding income if they have no fallback and it's either qualify for UC or nothing. Very scary. I'm in the back to work group even though I'm providing fit notes as I haven't yet been medically assessed, so only receiving £92 per week. They are supposed to contact you within 10 working days, it took them until the 9th week of my claim for a confrontational call handler to phone me to tell me my back to work advisor would phone me on X date at Y time (11th week) and when I said let me check my calendar as I have some clinic appointments that week he said you have to be available or we will cancel your claim and he would not change the date. Back to work advisor was very pleasant and sympathetic, worked in the local job centre, but still had to go through making "work commitments" with me as I haven't yet been assessed medically by them, so regardless of existing fit notes he has made a face to face appointment in November now. I appreciate he is only doing his job and what the computer system is telling him to do. He said his report from our conversation goes to be assessed and then I heard nothing for a week or so. On the end of the 13th week a payment came through but I had no idea how it had been calculated and yesterday I received a letter saying I was being paid £92 a week and to await a medical assessment (can't remember the wording). I've heard the current waiting time for that is 6 weeks for a telephone medical assessment and I'm dreading it as they are supposedly two hours long and I know I will find it very tiring. But good luck with your claim, hopefully the back log will have cleared a little bit!

I'm doing okay, had great news in that the ribociclib is shrinking the tumours and some of the lymph nodes and my bone lesions appear to be healing although the bone is very painful still. Currently wearing the latest cancer fashions of compression garments with gloved sleeves for both hands/arms and my neck as lymphedema has flared up in the last month or so and have been told I have a suspicious growth in my liver that wasn't there before so "we" are keeping an eye on it for another month or so to see if the Ribo sweeps that up as well or is causing it??

You are right about cancer being an expensive illness, things needed to stay comfortable and pain free are so expensive on a limited income, the lymphedema nurse couldn't find a garment in her catalogue to exactly cover an area I'm having a particular problem with and suggested I buy an Under Armour compression top but sized down so it's even tighter. I asked her to show me and they were £30+ each and I was sat thinking there's no way I could manage that as I would need three (one on, one off and one in the wash?). I've bought one for now. The NHS also only allow you two compression garments every 6 months which obviously isn't really enough, given wear and tear and life dirt but they cost over £200 each if you want to buy more spare for yourself. The NHS is being well ripped off if they are paying that!

Rant over. Stay positive people!

Enigma54 · 04/09/2025 09:19

@PrincessFluffyPants oh crikey, I best crack on with ESA claim then. I didn’t know there was a backlog. I forgot all about it and have just read that you can claim 3 months before SSP runs out. Do you claim pip? I do, so that’s something. I’ve got work pay until December ( shit!) You are going in the work group? I’m heading for the support group I think.

Ribociclib is nothing short of a wonder drug. Long may it continue to work.

EachandEveryone · 04/09/2025 19:32

Gosh I’ve been afternoon drinking. I only had two I really can’t drink these days. Went to see a fabulous play at the Barbican and ended up sitting outside it was a lovely afternoon. Tonight I’ve got to get cleaned up and pack I have no idea how I’m going to get to King’s Cross I might have to do a rucksack on my back.

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