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Cancer Support Thread 93 - The Thread for the Dread and the Not Yet Dead? Everything you need to know about Cancer but didn’t want to know

971 replies

LemonDrizzle10 · 24/02/2024 17:59

Shiny new thread.

OP posts:
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25
Enigma52 · 10/03/2024 15:26

@MothralovesGojira you shouldn't have to forfeit any important treatment, due to finances; that's just wrong.

Do you mean that your PIP claim needs to be reassessed? Can a benefits advisor support you with the application? I am going to a Maggies centre, to completed mine.

It's so hard. My plan was to also look for a better paid job, once I'd recovered from my hysterectomy. Well I've recovered from that, but now have metastatic BC to tackle; bloody fuckinb unbelievable how this shit show of a life is going!

What about any additional benefis? MacMillan will know if there's anything to claim.

Bad timing re: your LL wanting to sell up. Is there anything else property wise, which might you suit in your area and is affordable?

Sending gentle hugs x

SewingBees · 10/03/2024 15:27

@MothralovesGojira Depending on your prognosis you may qualify for an SR1 form, which your oncologist can give you. That would entitle you to full PIP immediately and no pesky paperwork to fill in. If you're already getting PIP then get the form asap so you can get the higher amount.

You may also qualify for support when your sick pay runs out - I forget what it's called.

I have had great support from my local Maggie's centre with their benefits advisor helping massively with advice and form filling/checking. If you have a Maggie's near you I'm sure they would help, if not then the MacMillan team will have equivalent people who can help.

Enigma52 · 10/03/2024 15:31

@MothralovesGojira apologies for all the typos. Dreadful brain fog and fatigue!

Does any one have any menopause symptom remedies? Namely mood swings, brain fog, joint pain, and tearfulness. What with no ovaries and on hormone inhibitors, things aren't great! Thanks.

EachandEveryone · 10/03/2024 15:33

ESA is what you get when the sick pay runs out but it’s not until week 26 or something. Macmillian are incredible at benefit advice if you haven’t registered with them please do. When I had a uc going in the SE as well they would’ve paid up to £1800 rent and that was as a single person with no kids I was lucky enough that I didn’t need it but the minute my wages went below £2000 I got some uc I was shocked really.

Tilllly · 10/03/2024 15:37

Enigma52 · 10/03/2024 15:31

@MothralovesGojira apologies for all the typos. Dreadful brain fog and fatigue!

Does any one have any menopause symptom remedies? Namely mood swings, brain fog, joint pain, and tearfulness. What with no ovaries and on hormone inhibitors, things aren't great! Thanks.

Yes, flaxseed oil

I get it from Holland and Barrett and take a capsule morning and evening

It takes a couple of weeks to start bedding in, but it really is a miracle worker. I've recommended it to lots of people and everybody who have taken it and said it helped

It's got certain omega oils in as well so even if it didn't help it's good for your joints and skin and dryness and other stuff
So you have nothing to lose by trying it, but I think you'll be very appreciative of the value of it

Enigma52 · 10/03/2024 15:40

@Tilllly
Thanks, just checking it out now.
There are so many supplements out there, but funds are limited. 🤞

Tilllly · 10/03/2024 15:59

I usually get them when there's a penny sale on, so you get two bottles for the price of one really

I guess they are not cheap, but they are so effective, I wouldn't do without them
Make sure you get the capsules though

Enigma52 · 10/03/2024 16:03

Are these the ones?

Cancer Support Thread 93 - The Thread for the Dread and the Not Yet Dead? Everything you need to know about Cancer but didn’t want to know
Tilllly · 10/03/2024 17:16

Different bottle to mine but the blurb on the front is the same

KentishMama · 10/03/2024 17:27

@MothralovesGojira I'm so sorry it's such a shit show for you right now. I understand how overwhelming that can feel. However, I think it boils down to two priorities:
(1) Help figuring out your financial situation. Here a Maggie's or Macmillan can really be miracle workers and take the paperwork off your shoulders.
(2) The medical situation. I'll be blunt (sorry-not-sorry): With a recurrence of a grade 3 tumour and a bunch of question marks re: lung, you will need to be brutal and throw everything at it. Don't delay chemo, don't cut corners. Find out what the most aggressive treatment plan looks like, and do it. I 100% understand that you're trying to do the right thing for your DC here, but the best thing for them is for you to survive this, so you can be here for them in the future.
I hope you'll forgive the bluntness. I'm on my second cancer, after stage 3 BC, and I don't have much of a filter any more.

How everyone is having a relaxing Sunday. I was looking forward to a Mother's Day meal out, but DS8 has had a high fever that's not improving for a few days. So we went to Urgent Care instead, who couldn't decide if it's a respiratory infection or maybe Scarlet Fever, as that's going around locally. So it's antibiotics for him, and a sofa day for all of us. Meh.

SummerCycling · 10/03/2024 18:52

MothralovesGojira · 10/03/2024 13:10

@SummerCycling
Thank you for your detailed reply - I'm most grateful.
My original BC was actually a grade 3 (have that in writing) and my new one is currently grade 2 pending results of staging scans. Our breast dept. grades all breast tumours at 2 pending staging.
Back in 2022 I had a lumpectomy first then EC x 4 cycles (at 3 week gaps) along side Herceptin (trastuzumab). I had 9 cycles of Herceptin at 3 week gaps. It should have been 18 but oncology then panicked and stopped the Herceptin because a CT scan (to investigate chest pain) showed lung nodules/shadows. I had two CT scans which showed that my lungs were the same so oncology said it appeared stable but would probably develop into lung cancer later (wtf!) but not to worry and to ask to be referred back if I started doing stuff like coughing up blood (yes, really) and that was it. I have never seen oncology since and they have ignored the two messages that I left asking for info on how I would be monitored going forward.

I did not have any radiotherapy. I saw a consultant about it and outlined my worries about RT (my sister-in-law had died suddenly the year before from damage caused by RT) and asked for some stats on the likelihood of damage to my lungs and/or heart in the area that they were looking at doing. He was an absolute git to put it politely. He talked down to me and refused to provide the info I asked for. All he said was RT would put my 10 year survival rate up to 87%. Oncology had already told me that with all the treatment that I'd received my 10 year survival rate was 86% so I asked him to clarify why the 1% was so important and how that measured up to the percentage chances of damage, permanent or temporary, if I went ahead with RT. He responded by asking me "look are you going to have this or not?" When I replied that based on what he wasn't telling me then I thought not, he slammed his notebook shut and asked me to leave. And that was that. What's interesting is that my medical records appear to indicate that I have had RT and the breast consultant that I saw this week was quite insistent that I had. I confirmed that no I had not and explained why. She was genuinely shocked and said that when a patient 'refuses' treatment then the guidelines here state that a second appointment must be made to address any concerns raised so that an informed decision can be made and other avenues discussed. Obviously that never happened.

So here I am. I feel rather pissed off. Having heard the treatment plans of others on here, I'm starting wonder if I was poorly or incorrectly treated and now I have to make decisions about what to do. I can not afford a long period of chemo as I will only get 6 weeks of full pay. My youngest is 2.5 months off of finishing college and is too mentally fragile to take yet more cancer rubbish so I'm going to have to hide my diagnosis for 2.5 months to preserve their MH and not distract/ruin their final exams. I have things that I can not/do not want to move or postpone for the next four months. Last time the six months of treatment/recovery time nearly broke us financially even though my DP works full time and I went back to work far too early in what is a physical job. My small amount of PIP will end at the end of the year and my plan was to get more hours/better paid job this summer but that won't happen now. With the COL crisis we are going to be in deep shit and no chance of moving as rents even for a smaller house are now the same as we pay or more expensive. And my LL has indicated that he may want to sell our house because he wants to buy a holiday home somewhere sunny. I just can not believe how unlucky we've been but it is what it is.
Anyway thank you for listening to my tale of woe and many thanks to @TopOfTheCliff @lucysmam @Tilllly @demivolte who have offered excellent advice and thoughts.

@MothralovesGojira

When oncology said that about your lungs, was that the breast team or lung Multi-Disciplinary Team (MDT)? Or does your hospital have a more general oncology dept where they cover multiple types under one Team? It does seem odd and scary that they'd say that to you but then leave it without ongoing observation.

I'm sorry to hear the radiologist was such an arrogant upstart and so unprofessional; you have every right to ask questions and receive polite answers without being treated like that. He should understand that after what happened to your SIL you were of course going to be very worried and cautious about radiotherapy - who wouldn't be!

It's shocking what the consultant told you this week about you not getting the second meeting about radiotherapy. I didn't 'refuse' any treatment so didn't know that was the protocol, but it makes sense doesn't it. You seem to have been let down with that second meeting not taking place. Are you still at the same hospital?

The 10-year survival rate you were given was high. I think my 5-year rate is about 60-70% no idea about 10-year, but my cancer was far more advanced than yours on diagnosis. I also sort of think these rates are only helpful in the case of extremes (99% survive or 99% don't) otherwise they aren't much use because we don't know which group we'll be in or how many in the alive group are alive but living with metastatic disease. There are so many subtypes within each subtype...

From what I know, the fact you had 4 cycles of EC chemo is really good. I had that to start my treatment plan, and they said that chemo is to try to obliterate the cancer in the whole body (not sure if it can cross into the brain, but at least everywhere else).

It's maybe odd that you didn't then receive any further chemo; having Grade 3 ER-negative, HER2+++ AFAIK it's usually then Paclitaxel weekly for 12 weeks. I personally stopped that very early due to side effects, but was prescribed the 12 weeks. This is maybe something you can ask about if you are finding out about your previous treatment plan not being complete.

I'm really sorry to hear about the financial pressure you're under and also the insecurity about your home. That's horrendous and too much to take on top of the cancer. If you have a National Insurance record of contributions in the last 2-3 years (I don't know the exact rules) then there's Contribution Based ESA. For people on chemo there's the Support Group which gives you about £560 a month. I have been receiving this for some months now (didn't know about it before then). This carries on for as long as they think you qualify, there's no set end. I filled in a PIP form and spent ages on it, but chickened out of sending it in because I was scared of the interview - I was so emotionally vulnerable.

I need to go now, but will reply more soon.

xxx

lucysmam · 10/03/2024 19:02

@Tilllly is flax seed oil any good for hot flashes?

They're literally the only random symptom I have & they do my head in...clothes on/clothes off/slippers on/slippers off/scarf on/scarf off 🙄 it was ok when it was colder & I had my own personal central heating but now it's annoying as fuck!

Tilllly · 10/03/2024 20:46

Very much so @lucysmam

It does take a few weeks though. When I first went on the flaxseed oil, the night sweats stopped in a couple of weeks and then the daytime hot flashes power surges stopped a week or so after that.

I remember, after a few months, we'd been away for two or three nights and I didn't take them with me, and the hot flashes came back after a couple of days. So it's not a cure, it just relieves the symptoms while you're taking them.

lucysmam · 10/03/2024 20:58

Thankyou, I've just sat down so will have a read about it while I eat some of my chocolates.

Daytime power surges - never thought of it like that, but yes! I am totally there with that name!

MothralovesGojira · 10/03/2024 21:48

@SummerCycling
Thanks for your advice & lovely reply.
Unfortunately there is only one large hospital where I live and that deals with everything so there is no option to go elsewhere. I have found that all my poor treatment, without meaning to sound sexist, has come from men. From the shite Radiology consultant to the oncologist who asked me why I needed a full head of hair at my age to the GP who told me that at my age I would have to put up with the chemo induced arthritis - I have been dismissed and ignored by all these men. Post chemo the only hair that grew back was at the back of my head so not only do I look like a mad Max Wall with 1.5 tits, I have no eyebrows, eyelashes, nasal hair or body hair (apart from from a small area in my lady garden). Luckily I have a nice collection of beanie hats as I can't wear a wig because my scalp still hurts so I manage. No one will investigate what has happened with my hair and I truly look awful scary but even my GP won't investigate. On the other hand I can't praise the chemo unit nurses highly enough as they were always kind & caring but even they sometimes looked embarrassed or perplexed at what was going on at consultant level.

As for money - and thanks to everyone who has offered advice on this - I didn't qualify for any state help last time. I was on Carers Allowance until 2020 and then without work until late 2021 when I found my current job which is part time and near NMW level so I don't earn enough to pay NI/tax. I have stayed at my job (which I love) as youngest DC still needs full support with day to day stuff as they have medical needs as well as MH needs as it's flexible so planned to look for more hours this summer. I have friends who work in the DWP and I will approach them again for advice but having looked at the online benefits calculators I don't think that I qualify for ESA or UC but I will try again if I need to. I will qualify for SSP for 26 weeks but that's a hefty drop in income as I usually top up wages with overtime. Anyway DP & I will sit down and work it out but needs must. I returned to work 6 weeks after EC ended last time and continued working while having Herceptin every 3 weeks with Herceptin every third Friday and then back to work the following Monday so I guess I can do it again????

You should consider sending in that PIP form SummerCycling. I didn't have to have an interview at all. Someone phoned me to run through all the details to confirm that my condition was unchanged and then three weeks later I was awarded PIP. I was astonished as I'd been through the process with DC and they were turned down.

Enigma52 · 11/03/2024 18:19

Had CT today. Feel crappy. So anxious, my heart is beating out my head! Will be " phone watching" all week now.

Hate it all. And I wish the fucking pissing menopause, would do one! Bad timing!!!!!

Shityshitybangbang · 11/03/2024 19:26

Enigma52 · Today 18:19
I cried waiting in the waiting room getting my ct scan. In front of a few elderly men, I felt silly as I cry every time I go to the hospital. Everyone else looks so composed and I’m always sitting blabbing in the corner through nerves. Then the phone watching is the worst. I just want my old life back. All those silly worries I used to have they seem irrelevant now 😩 sorry for the moan

SewingBees · 11/03/2024 19:42

@Shityshitybangbang I get very emotional in my local hospital radiology department - I've had a multitude of cancer scans there, but also a pregnancy ultrasound when I found out that the baby had significant issues likely not compatible with life. It's the hardest place to be and I turn into a wreck.

Shityshitybangbang · 11/03/2024 19:59

SewingBees · Today 19:42
sorry to hear about your pregnancy ultrasound , that must have been very difficult 💕xx

SewingBees · 11/03/2024 20:03

@Shityshitybangbang Thank you. It was a while ago now and I've made my peace with it all, but the radiology department is still triggering for some reason.

Enigma52 · 11/03/2024 20:05

@Shityshitybangbang it's awful. I hate all of it. I can't breathe in there through nerves. I grieve for my former life.

@SewingBees that's tough. Life is unbearably cruel and challenging. 🌷🌺

Going to have a bath.
Plastic surgery appointment tomorrow to check my reconstructive breast. I couldn't care less about it.

Think the fluid needs draining again.
OMG not that pain again 😥

SewingBees · 11/03/2024 20:09

@Enigma52 You sound really down, is there anyone irl you can talk to? I know what you mean about not caring about some appointments, it starts to feel like a hamster wheel you can't get out of at times.

Enigma52 · 11/03/2024 20:11

@SewingBees yes I am feeling down. The menopause is being brutal with me ( crying episodes/ mood swings) and just fed up. It all feels relentless.

SewingBees · 11/03/2024 20:35

@Enigma52 I'm sorry to hear you're suffering so much x

Enigma52 · 11/03/2024 21:19

@SewingBees thanks. Maybe one day I will feel better x

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