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Original poster

Stage IV cancer? Incurable? Roll up, roll up, this thread is for you!

998 replies

mowly77 · 05/08/2023 17:46

I’m expecting tumbleweed. But I’ve jumped over from the lovely supportive threads I’ve been on for general cancer - latest one here-

https://www.mumsnet.com/talk/general_health/4863468-cancer-support-thread-89-the-best-thread-that-no-one-wants-to-be-on?reply=128175880

to see if there’s any interest in a separate thread. I often feel like such a derailing buzzkill on the general cancer threads as there are so many shapes, sizes, flavours of cancer & so many different issues when you’re being treated to be cured as opposed to being treated palliatively.

And those of us unlucky enough to be incurable, and let’s face it, dead, sooner rather than later from this insidious disease, have our own concerns and darknesses. And admin. And hopefully some good days. Please, please let there be more good days.

Help, advice, dark humour and support are the aims. There are wonderful people on the cancer support threads & I often feel guilty for trauma-dumpling my tales of woe on it, to those dealing with their own, but different, bullshit.

Anyway —- come on in, the door is open. All I have to offer today are tales of woe about NHS incompetence & updates on the state of my bowels.

Here’s ‘my story’ - my bullshit story I wish wasn’t true but here we are. Please share yours if you would like.

estrogen+ BC diagnosed age 36, v aggressive, 3 tumours, 2 very large. Right mastectomy. No lymph node involvement. 5 miserable months of old school FEC poison. Then diagnosed BRCA2+. Left risk reducing mastectomy. Then crickets from the NHS. No one told me NED but indeed I had none. So for 11 years I love my life.

I give birth in 2018 to my DD, conceived via IVF, as my reproductive capabilities did not survive the FEC. Had my ovaries removed shortly after as per advice for BRCA2 patients . THEY DIDN’T BOTHER TO FURNISH ME WITH ANY ADVICE ABOUT HOW TO DEAL WITH SUDDEN SURGICAL MENOPAUSE WITH NO HRT THOUGH. And a baby in the mix! I’m still v cross about that.

Right when I wasn’t expecting it, when I thought I had ‘beaten’ the ten year survival rates (hahhhha, that fucker came back. After much faffing from utterly shitballs hospital trust finally diagnosed metastatic, stage 4, incurable, spread in my lungs, pleura and sternum. This was March 2022 when my daughter was 3.5

I’ve since had 15 rounds of Paclitaxel (first 3 months some shrinkage; last 3 months total failure, back where started) & then managed to get moved to Royal Marsden in London with great effort as my oncologist was so bad, so rude & she made my life a misery. I started on the ‘gentler’ regime of Palbociclib & Letrozole and whilst I was battling horrible side effects from those I had a 6 month run of clear scans and I was finally getting to grips with the treatment. Then the other shoe dropped and the bastard cancer is growing again. I’m still on Palbo & Letrozole while they test my blood for an enzyme that will determine if I can move on to Capecitabine. Which I’m terrified of! Better the devil you know.

In the meantime I’m in America with my family (who all live here) trying and failing to communicate with the NHS over email to see if I can fly home earlier than scheduled so they can see me quicker and get me on Cape asap because I’m really not doing well.

I can have a ‘good’ day if I’m dosed up to the eyeballs on Oramorph but it’s all quite exhausting & I’ve had to temporarily come off it to relieve my insane constipation and stomach issues. So now I’ve been on bed for two days. BUT it’s not all bad. I’ve been to see the Barbie since I’ve been here & been to the local pool with DD a few times & enjoyed sitting on the porch listening to the cicadas. It’s boiling hot too so am getting a break from the rain.

I’d love to hear your stories, tales of woes, worries, advice. Anything at all you want to say in this safe supportive space. There’s just so much in the mix for this stage of bastard cancer.

Page 3 | Cancer Support Thread 89 - the best thread that no one wants to be on. | Mumsnet

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ohimsohappy · 15/08/2023 22:33

Bluekangaroo123 · 15/08/2023 22:29

@HopefulSeller thank you 😊 & the same to the other lurkers that have mentioned they are wishing us well.

I agree thank you to well wishers !

bookwormcrazy · 15/08/2023 22:41

mowly77 · 15/08/2023 21:46

Hi @bookwormcrazy I am sorry about your partner — but this thread is a safe space for those of us with stage IV diagnoses ourselves. If you read the thread there’s a few people in your position and there’s a great thread called The Storm or something like that for partners and loved ones which has been recommended. It’s in life limiting illness I believe so have a rummage around.

Thank you, I will take a look and check out your suggestions. I hope your wedding goes well tomorrow. X

Original poster
mowly77 · 15/08/2023 23:02

That’s a good suggestion about Macmillan @Bluekangaroo123 also your local hospice — again not just for end of life care. But I still hate the association, as anyone with an illness that isn’t going to end in their death won’t get referred to a hospice will they now hmmmm. But anyway! A lovely hospice nurse came round to my house and sorted out all my pain meds and anti sickness when I had been discharged from a traumatic hospital stay. Your GP can refer I believe. I haven’t seen them since as I stuck my head firmly in the sand but apparently hospice & GPs are the only medical professionals allowed to actually come to your house and give you medical care so that’s potentially useful.

good luck @bookwormcrazy I hope you find lots of support and advice on the carers and family thread.

OP posts:
ohimsohappy · 16/08/2023 03:13

Does anyone have trouble sleeping at night , and have panic attacks ? I was refused sleeping tablets .

Original poster
mowly77 · 16/08/2023 04:40

Can't believe you were refused sleeping pills @ohimsohappy Yes, I have great issues sleeping at night, & I have panic attacks. If I couldn't sleep at night I would be 1000 x in worse health than I am, if that's possible & most likely would have killed myself.

If your GP refused you, I would ask to change GPs. I would also ask your hospital consultant, your specialist nurse, and all & any other medics you come into contact with to help you. I'm so sorry -- sleeping pills seem like the very least the medical establishment could prescribe seeing as no-one's figured out how to cure cancer yet.

As I said upthread, I have a very helpful GP who dispenses my prescriptions & has never refused me. I have sleeping pill & diazepam prescriptions. I do alternate my prescription sleeping pills with OTC ones though. Phenergan works well for me, but good old fashioned Nytol or another antihistamine based one might work for you. As I'm in the US & using Benadryl at the moment as well as my prescription.

I'm too ill to exercise enough to sleep well frankly. The pain keeps me awake & the panic attacks & general dark thoughts always keep me awake. I've had insomnia all my adult life though. Definitely worse with menopause & the hormone blockers now. With sleeping pills I can get about 5-6 hours in one go which is not bad, & when I wake up in the early hours I can usually get back to sleep or doze for a bit. But I've got lots of family help with DD atm. It's normally much much worse when I have to wake up to get her ready & take her to school. A problem for future me!

OP posts:
TwigTheWonderKid · 16/08/2023 09:07

So first Oxaliplatin yesterday was a bit ofa disaster from start to finish!

Arrived at 9.15am. Nurse went through everything but then was concerned by my Creatinine level but also big worries about my heart rate and blood pressure.

So, first they said they needed to delay it because my heart rate and blood pressure were too high. Then they sent me for an ECG and said it was ok and so we went ahead, 3.5 hours later. All was well but then about 10ins from the end I started feeling "weird" and really out of it. Was given antihistamine and more steroids plus Lorazepam but then sent to A&E for bloods re possible infection, a chest x-ray and another ECG.

About 11pm they found me a bed in a private room with bathroom on A&E but spent the night wide awake with horrible reflux, an alarm going off somewhere every 30 seconds and screams from some poor lady who is obviously having some mental health issues.

Happy days!

Bluekangaroo123 · 16/08/2023 10:42

Oh Twig I’m so sorry. That sounds horrendous. I did have 6 rounds of oxaliplatin as part of my original treatment regime (folfoxfiri). It’s such a strange drug & I remember I wasn’t allowed to drink or eat anything cold after. Do you know what the plan is for you now? I also had terrible reflux generally on that regime & I stopped taking the oral steroids as they made it worse & also went on lansoprazole. How are you feeling now?

Bluekangaroo123 · 16/08/2023 10:45

@ohimsohappy i just saw my GP & he has prescribed phenergan for me (antihistamine) which I know works well. I’m also going up my Sertraline from 50-100mg. As Mowly says we really need these drugs to cope & get through the day! I really hope you manage to have success maybe with a different GP. Lack of sleep makes it all so much worse.

Bluekangaroo123 · 16/08/2023 10:47

@mowly77, I hope your wedding goes ok today & you can get through it as painlessly as possible.
I totally agree about the association with hospices/ Macmillan nurses. The GP wasn’t actually too sure about referring to the Macmillan nurses although he said he’d look in to it. Just the word hospice makes me feel panicked although I’ve heard from many people that they are very positive & uplifting places. I’m glad they helped you with your pain relief.

TwigTheWonderKid · 16/08/2023 13:26

Feeling loads better now. My first symptoms was double vision but my husband and I think that might have been to do with the way it can affect your muscles and obviously you need you eye muscles working properly to focus both eyes together but it was really scary at the time.

My bp and heart rate are still high so they think I have an infection and am on IV antibiotics. They also need to investigate the swollen abdomen I've been trying to get someone to investigate for weeks, however, tomorrow is A level results day and I really want to be at home for DS1 so I am ready, really hoping they will let me out today. Waiting to hear when/ if I can start the Capecitabine tablets.

@Bluekangaroo123 glad GP was helpful.

@mowly77 wishing you every happiness. Hope you all enjoy your special day.

HerbalRefreshmentt · 16/08/2023 13:47

@mowly77 The GP seem on top of things and i get straight through whenever I write in, so I will ask Monday at Marsden about getting a little chemical help then go via GP (who now have to fill my Apixaban blood thinner meds anyway). I had a very very small amount of alcohol last night and relaxed so much my hip finally didn't hurt so frankly, even a little bit of something to relax when needed would be helpful. I wish there was a better medical marijuana situation here, I could go to a dispensary for all sorts of concoctions instead of Yet Another Pill (YAP).

And I hear you about side effect shocked pikachu face lol. Like yes, Im getting some headaches from the blood thinner - you aaaree? Or no, im not getting THESE side effects from cape but Ive been charting them and I went insane on day 10 (similar to your description) - oh thats unusual, Ive never heard of that. I doubt it, this drug's been around a long time!

So my recommendation would be to chart your sleep, symptoms, nausea, appetite, anything and everything for the first three cycles (I was told it goes full force by the third and well, here we are) to get a clue and some back up for a lower dose or swap to 7 on/7off schedule rather than 14/7. Now I know what to ask for and know when to not be in public or how to manage on certain days, it will be a lot easier.

Fantasea · 16/08/2023 14:24

@HerbalRefreshmentt I'm on Rivaroxaban so I think similar to Apixaban and also got headaches when I started on them! I get headaches from my chemo now (but it still might be the Rivaroxaban now I think of it).

My oncologist was genuinely stunned when I said I got a sore mouth and tongue on the chemo tablets but only when tired. 'When you're tired? Right...'. but I do and still do months later!

mowly77 · 16/08/2023 14:41

This reply has been hidden

This reply has been hidden until the MNHQ team can have a look at it.

Original poster
mowly77 · 16/08/2023 14:42

Well I suppose I’d better get up and get married. In the meantime MN have automatically hidden my reply extolling the benefits of medical marijuana!

OP posts:
Original poster
mowly77 · 16/08/2023 14:44

& thanks for the charting idea Herbal. I will indeed be doing that & look forward to presenting it to my oncologist so he can make the pikachu face.

OP posts:
Silkiebunny · 16/08/2023 14:45

Just popping in to wish you a lovely wedding day Mowly and hope your DD had a nice 5th birthday.

Fantasea · 16/08/2023 14:50

@mowly77 wishing you a lovely wedding day Xxx

LittleBrownBaby · 16/08/2023 15:05

I hope it's ok to jump on. I lost my mum to breast cancer when I was 8. I've been reading all of your posts and so many of you talk about your fears for your children.

I just wanted to offer a bit of hope that whatever happens I believe they can thrive and find peace - because I have. I still think of my mum all the time. In 8 years she played a huge role in making me fiercely independent and determined. My dad has no role in my life (his choice) but my mum is still with me so much and now in her grandchildren.

Even without my mum for almost 30 years, I have lived a good life and not felt traumatised by the loss. I also lost my brother - maybe I'm just used to it, but it doesn't define me.

I just wanted to let you all know that you are each doing the best with what you have and that whatever happens you matter very much now and forever to your children.

As someone with a very strong family history of breast cancer - I am all to aware of my own mortality. But like so many have said - I'll take the hand I'm dealt in life and keep putting one foot in front of the other. There's no other option x

ohimsohappy · 16/08/2023 15:10

@mowly77 Yes do have a lovely wedding day . I hope everyone is doing ok and coping the best they can 🤗.

Bluekangaroo123 · 16/08/2023 15:39

Glad you are feeling better & hope they do let you out soon @TwigTheWonderKid. I’m glad they are investigating though.
I was going to ask about medical marijuana @mowly77 so that’s a shame they’ve hidden your post! It’s ironic given it took a while for them to hide the posts about the life saving RSO oil!

Bluekangaroo123 · 16/08/2023 15:43

Thank you @LittleBrownBaby, it’s so lovely to hear your perspective. I’m so glad to hear that it hasn’t defined you & that you feel your mum is still with you. My daughter is my everything so I just want her to be ok.

LittleBrownBaby · 16/08/2023 16:19

Bluekangaroo123 · 16/08/2023 15:43

Thank you @LittleBrownBaby, it’s so lovely to hear your perspective. I’m so glad to hear that it hasn’t defined you & that you feel your mum is still with you. My daughter is my everything so I just want her to be ok.

I'm so sorry you find yourself facing such an awful situation. I know there aren't any words that can change that. I hope you find a way through this that offers you as much peace and is as painless as possible. Positive vibes heading your way.

Bluekangaroo123 · 16/08/2023 16:48

Thank you @LittleBrownBaby . I’ve already benefited from advances in cancer treatment so I remain hopeful while also being realistic. Also denial can be useful too! You sound like a lovely person & credit to your mum.

Elisebev · 17/08/2023 22:57

Elisebev · 05/08/2023 19:46

I’m not on the other thread but having had stage 4 breast cancer for 5 1/2 years, I thought I would join this one

in November of 2017, I found a lump on my rib underneath my rib. I had injured my rib a few months before horse riding and the lump was in the exact same place. I went to the GP to get it checked. He didn’t seem u dialysis worried but said he was referring me to get it checked. 7 weeks later, appointment day finally came!!I had gone to hospital on my own naively thinking that the lump was due to the rib injury. Never ever thinking that It was more sinister. I knew even before thee oncologist broke the news to me that something was wrong by the way the staff were acting. Pointing at the screen, getting me in for lots of X-rays etc. I was told that day that it was in both breasts and a few weeks later just as chemo was due to start, we found out that it had in fact spread to the spine and pelvis. I really thought my life was over. The plan for chemo was abandoned and I went straight onto letrezole, ibrance and zometa. I had 5 years on being stable but in January a routine scan showed that it had spread to the liver. I was taken off letrezole and ibrance and put on faslodex. More scans in May showed that the faslodex wasn’t working and the liver had got worse. Now on cape. Due scans imminently to see how this treatment is working. Absolutely dreading them.

Got a call from hospital this afternoon arranging a Ct scan for tomorrow morning. May need to negotiate results appointment with oncologist when I see her tomorrow . Would guess she will be wanting me to come next Friday for the results but I am away overnight that night with friends and really don’t want results that day in case they are not good. Don’t know whether sudden call about scan is because she suddenly realised that she hadn’t requested it or because the nurses have told her that I am really suffering with pains in both legs ( was awake most of last night with the pain). It’s definitely going to be a stressful few days. The results wait neve4 gets any easier

Willowow · 18/08/2023 00:08

I don't have cancer. I just stopped by and wanted to wish you the best and to make a suggestion, particularly to those with children - record your voice.

It's so easy to forget just what a lost loved ones voice sounds like, when it is the sound you yearn to hear again the most. I think your voice may be a very precious gift to your loved ones. You don't have to record anything long, difficult or particularly well thought out. Perhaps record an ordinary conversation? Or singing a song (if you like to sing). I expect even reading irrelevant nonsense from some random book or newspaper would probably be appreciated, just for the sound alone. Memories are so sensory. I suppose it would be worth thinking about other sensory memory experiences - something that can be smelled, something that can be touched etc.

I hope this suggestion is welcome and once again wanted to wish you the best with the shitty hand you have been dealt.