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Cancer support thread 90 - still the best threads no one wants to be on

1000 replies

LemonDrizzle10 · 14/09/2023 08:07

Last one filled up quickly!

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42
SummerCycling · 12/10/2023 20:36

Florabritannica · 11/10/2023 18:44

@SummerCycling Not before today. Perhaps this is a side effect of Paclitaxel that nobody mentions.

That's the sort of side effect I could do with! 😂Sick of peripheral neuropathy, high blood pressure etc.

SummerCycling · 12/10/2023 21:13

@Unex welcome to the thread. Sorry you hear you qualify to join us here; that's something nobody wants.

Please don't get rid of your motorbike!!! That could be something great to think about and look forward to as you progress through treatment. You might be up to using it during treatment too, some people even carry on not too differently to before ( not me but there are people!)

About finances, someone already mentioned ESA and I also think that's worth applying for if it matches your situation. I get the contribution-based version which is for after sick pay runs out, or is instead if the employer doesn't pay any. People need to have paid in 2 years of NI in the previous 2 years (could be 3 previous years, not sure) to qualify. Chemo and/ or radiotherapy patients are put into the 'support group' and receive £259 every 2 weeks, unlimited how long for. They don't take your savings or family income into account.

I don't know about the income-based ESA, that is different. As @Silkiebunny mentioned, some cancer patients apply for PIP too, and I know someone who got that for breast cancer. I haven't applied so can't advise on it though.

@Slitheringheights welcome to the thread. It's horrible isn't it, to be joining a cancer patients' thread. It is at least a really, really friendly and supportive group of people.

Good to hear surgery went well, and also that the lymph nodes weren't affected by the cancer - those are very important and encouraging things I think.

Starting on chemo is terrifying, no wonder you feel so knocked by it all. And apart from that, the diagnosis will have been a massive shock, then surgery was a major event for your body to take and recover from.

My first chemo cycle was the scariest. Once you start at least you know sort of how it works, you get to know the routine, the rooms, procedure, the kind chemo nurses and the place becomes familiar rather than totally alien. A chemo unit is never somewhere you'd choose to visit, obviously, but it becomes less unknown is sort of what I mean. I went to the chemo unit every 1, 2 or 3 weeks for well over a year, so I got to know the nurses and receptionists well, and I can say some of them are amongst the kindest people I've ever met.

Is there anything in your hospital like a Maggie's centre, or a MacMillan centre or something? There isn't anything at my hospital, but I discovered one at a different hospital after some months of treatment. I wish I'd known sooner because it helped so much having somewhere to have a cuppa and the chance to chat with others who were also going through similar things.

ForfarBridie · 13/10/2023 06:12

Your 60% recurrence is clearly not about the cancer I was talking about

It really doesn’t matter what type of cancer you’re referring to when you repeatedly refer to a stage 1 diagnosis in lesser terms. Going forward, perhaps you could make it clear you’re referring to your type of cancer? But then wouldn’t that be the makings of a ‘them and us’ attitude?

Are you really sure that grade 1, stage 1, ER+ BC can possibly have a 60% chance of recurrence? I struggle to imagine that to be honest. Let alone over the first 2 years...

Even I don't have a 60% chance of recurrence with a HUGELY more aggressive cancer with HUGELY higher risk of recurrence than a person with stage 1, grade 1, ER+ BC

Am I really sure that my cancer has a 60 percent chance of recurrence over the first two years after a stage 1a diagnosis?

Yes. I’m quite sure. But thank you for asking anyway. Not that I thought for one minute you were suggesting I didn’t understand my own diagnosis.

Silkiebunny · 13/10/2023 06:33

Hope all goes as well as it can for your results today Tilllly

ForfarBridie · 13/10/2023 06:33

Summer and Far I really like both of you and hope you both stay in the thread

Thank you Silkie, I’m rather fond of you also. And as it is I won’t be leaving the thread. The thought never even crossed my mind. In fact the only place I’ll be going is over to Fife later today for a family wedding on Saturday before going home on Tuesday.

I’m really sorry to read about the delay in your surgery and I hope it can happen much sooner than later.

And your son? How’s he doing? My boy (and he is even at 32) is doing really well just now and gearing up for Christmas. He’s still very much a believer in Santa. ❤️

Silkiebunny · 13/10/2023 06:42

Have a lovely time in Fife Birdie hope the wedding goes well and its a good weekend for everyone. Hope the weather is better than we have here today - heavy rain and strong winds though if its not in France they say rainy wedding, happy marriage.

Glad your son is doing well and lovely he still believes in santa. My daughter is doing really well just doing Oxford admissions test but my son isn't great. He's still terrified of leaving house after the hospital. Went into catatonia again briefly the other day after cahms sent another new person round to house but have got a stop to that. Been much better since then and yesterday for dinner he had steak, aligot, 3 toffee apples and a whole pack of madeleine which is great as he needs to put on weight. His eating and drinking are really good and his personal care is improving.

Silkiebunny · 13/10/2023 06:54

I am getting my head around waiting even longer for the surgery though not convinced it will ever happen. But thought can work on rest of appearance in meantime and continuing keeping fit which have been doing really well at - did a 5 mile walk and Waverley boat on Sat, 4 hours heavy gardening on Sunday (this was a near death experience but good to get it done😂! we are having outside of house painted starting on Monday - good luck to them with weather though currently its sunny from Monday) and swam a mile today and also got my haircut. And I lost a bit over 1kg of the Tamoxifen weight in 1.5 weeks.

Husband is away all this weekend in France for his piano hobby so just the kids and I but will be fine.

dotty2 · 13/10/2023 07:40

Glad to hear of some glimmers of positive progress with your weight and your son @Silkiebunny

I’m feeling very anxious this morning. I have my regular medical oncology appointment this morning and my surgical 1 year follow up this afternoon. I’ve been having some intermittent swelling in my arm on the side of my lymph node removal and the worsening pain. I suspect lymphoedema but who knows. Will report back. Thinking of everyone else today. This thread is a lifeline to so many.

Silkiebunny · 13/10/2023 07:48

Hope it goes OK Dotty Its hard to know with these things, I have a bit of pain on same side but it comes and goes so they weren't worried. I actually think it maybe the new memory foam pillows I bought which I love but are quite high up. Has your daughter settled at university now?

dotty2 · 13/10/2023 07:58

Thank you, silkie. And yes, she’s much, much happier. I’m sure there will be bumps in the road but it’s such a relief. Good luck to your daughter with the admission tests.

Silkiebunny · 13/10/2023 08:05

That's good Dotty. Starting uni is scary and hard but fun at the start time, its well worth riding out the bumps if you are able to. Admission test is on DD's 18th birthday so not the best day but she seems OK about it and got all A stars for her predicted A levels. But its only 5% acceptance rate as she's chosen one of the hardest courses to get into. Though she says she will take a year out if she doesn't get in and already has a couple of really good jobs, one of which pays really well, she gets £300 a day on good days taking rich tourists on tours.

Tilllly · 13/10/2023 08:18

Silkiebunny · 13/10/2023 06:33

Hope all goes as well as it can for your results today Tilllly

Thank you

Seems bizarre to be hoping I can have chemo. Who hopes for chemo?!
I suppose I'm just hoping it's no worse than "stage 3 at best"

Will have DH and DS1 with me - he's a doctor tho obviously not his specialty. Think it makes it quite hard for him

Tilllly · 13/10/2023 08:19

@Silkiebunny
Your positive attitude is amazing 🤩

Unex · 13/10/2023 08:39

Oooh I'm also negotiating A levels and university applications
My DD also applying for very competitive course
We were supposed to be looking round universities this weekend

Cancer wise having been told its kidney cancer, then probably not kidney cancer I've had referral through titled "urology high suspicion cancer"

Still waiting for the magic code for ovarian cancer appointment

lucysmam · 13/10/2023 09:16

Morning all!

@dotty2 I hope today's appointments go well.

I have my back to work meeting at 11am. I'm quite nervous even though the school is like a second home & my colleagues have been fab.

I am still really concerned about being 1-1 🙈 No idea why, no-one else seems to be! I just need to be careful & I have a tap-out if the little one gets too much/lashes out.

Waiting mode seems to be activated 🤣 I'm killing time with little nothingy jobs when I should really put clothes on!

Have a good day all 🙂

Silkiebunny · 13/10/2023 09:33

I can understand wanting chemo Tilllly to destroy the cancer. I was petrified of chemo and desperately didn't want it but met a lady with a much smaller cancer but only 30 and she was crying as she wanted chemo but couldn't have it as the stats said would not make a difference. I had it in the end.

I am not a positive thinker at all Tilllly, very much an analyser, researcher and worrier with a desire to manage things. That was fine until I got cancer and son was in hospital which gives no control and obstacles and threats are constantly put in your way. I have learned that if I get down or anxious to distract myself and also try and think of alternatives. And you realise you can often get to at least some of where you want to once you find a different route there.

Hope it's no worse than stage 3 Tilllly.

Hope your meeting goes OK LucysMam, I am sure they will be delighted to have you back.

Silkiebunny · 13/10/2023 09:36

Hope they find out the cancer type soon Unex. I was tested for several cancers before the breast cancer was found at a stage 3 equivalent, was two breast cancers. It was the one I never suspected though statistically it's by far the most common. But my symptoms were very much around uterus etc. Very bizarre. The CT of whole area is good if not had one.

Silkiebunny · 13/10/2023 09:40

I had bleeding with urine, blood from uterus, blood from bowel, no lump in breast until a 5cm cubed one appeared overnight after several years of bleeding and tests. No family history of breast cancer either. Weird.

dotty2 · 13/10/2023 10:38

@unex - I'm sorry about the uni application timing. That was me last year. I didn't manage to do any of the open days, and only a couple of offer holder days. I felt really rubbish about it, and DD did say when she was unhappy at first at uni that she felt she might have made the wrong decision because of all the stress of me being ill. But one small positive thing about it was that it was good for her and DH's relationship that he took her. He's a lovely man but a bit awkward, and so my DDs tend to prefer me to take them to anything that makes them feel anxious. I hope you get some certainty soon - the not knowing is so hard.

Silkiebunny · 13/10/2023 10:42

DD has only done the Oxford open day and no others though she is very determined she is going there but it's 5% acceptance rate for that course. She stands as good chance as anyone but it's a bit random who gets in. There are lots of resources online now at least and we were well travelled before and one of DDs jobs is for a university and the other one she works with lots of students.

Silkiebunny · 13/10/2023 10:45

DD also came back from open day moaning about all the mothers who insist on going when their children clearly don't want to be there and dominate all the q and a sessions and thanked me for not being an annoying mother just looking for a day out. 😂I went round 5 with my Mum but really was only ever interested in 2 of them so 3 visits were pointless.

Silkiebunny · 13/10/2023 10:52

And if anyone's child is going through exams at the same time as your chemo, big surgery etc you can get school to apply for special consideration with all exam boards, it's exams officer and gets 4% added unless that takes them over 100%. Its not much but every bit helps and also it makes you feel less useless.

Unex · 13/10/2023 11:12

@Silkiebunny I have to agree, open days not exactly mandatory but certainly DD loves to go! Went to Bristol and Lincoln and very different universities
I'll have a look at the extenuating circumstances thing, thanks

SummerCycling · 13/10/2023 12:21

@dotty2 Sorry to hear you've been feeling so anxious. About the swelling you mentioned, does your hospital have a lymphoedema clinic? I've got swelling on my chest and have an appointment coming up at the lymphoedema clinic that specialises in it. Hopefully they'd then carry out some tests on your arm and let you know what's going on, and then maybe treat with eg MLD.

@Tilllly I had the same hope on diagnosis about being no worse than stage 3. In my second lot of biopsies a few weeks after the diagnosis had been made, I said to the sonographer who was doing the ultrasound (guiding the biopsy) that I was desperately hoping it was stage 3a or earlier. Total silence... until then she'd been quite chatty. Mine is stage 3, but more advanced than 3a because of so many lymph nodes being involved.

I really hope you get the news you are hoping for.

@lucysmam I understand your worry about the 1-1. Do you have someone good at school you can talk to if it gets too much for you? I hope they rotate the 1-1 so it's not always you and you get time doing other things.

Being a cancer patient you are legally entitled to reasonable adjustments at work, which might come in handy if the school leave you to it doing the 1-1 and it gets really stressful.

@Unex Keeping my fingers crossed for you they work it out asap and can at least give you a clear diagnosis. Not knowing is truly horrendous.

SummerCycling · 13/10/2023 12:35

ForfarBridie · 13/10/2023 06:12

Your 60% recurrence is clearly not about the cancer I was talking about

It really doesn’t matter what type of cancer you’re referring to when you repeatedly refer to a stage 1 diagnosis in lesser terms. Going forward, perhaps you could make it clear you’re referring to your type of cancer? But then wouldn’t that be the makings of a ‘them and us’ attitude?

Are you really sure that grade 1, stage 1, ER+ BC can possibly have a 60% chance of recurrence? I struggle to imagine that to be honest. Let alone over the first 2 years...

Even I don't have a 60% chance of recurrence with a HUGELY more aggressive cancer with HUGELY higher risk of recurrence than a person with stage 1, grade 1, ER+ BC

Am I really sure that my cancer has a 60 percent chance of recurrence over the first two years after a stage 1a diagnosis?

Yes. I’m quite sure. But thank you for asking anyway. Not that I thought for one minute you were suggesting I didn’t understand my own diagnosis.

@ForfarBridie In all honesty, I don't know what you're on about.

You ask me to make it clear it's my type of cancer.... er no, it isn't. I have been extremely clear that I am referring to stage 1, grade 1, ER+ BC.

Of course it matters what type of cancer I'm referring to!!! Cancer is infinitely diverse it's crucial to be specific.

You say you're quite sure your stage 1a cancer has a 60% chance of recurrence. Ok, so have I ever or anywhere at any time suggested otherwise? I have no idea what type of cancer you even have!

As I said above for about the 4th, 5th or 6th time, I was talking very specifically about stage 1, grade 1, ER+ BC. Is that your type of cancer?

--- If so, you should maybe consider an appointment with your oncologist to discuss likelihood of recurrence because that cancer has a survival and CURE rate of pretty much 100%, so if you think your chance of recurrence is 60% you will be in for a nice surprise.

--- If not, then I have no idea whatsoever what your chance of recurrence is. If you say 60% then why wouldn't I believe you? I wasn't even talking about your type of cancer if it isn't stage 1, grade 1, ER+ BC.

Please clarify what you mean by my creating a 'them and us' attitude if I had been referring to my own cancer. (Which I wasn't anyway). I don't get what you even mean.

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