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

OP posts:
Thread gallery
45
TwigTheWonderKid · 12/08/2023 14:36

@HerbalRefreshmentt All being well, I'm starting CAPOX on Tuesday.

TwigTheWonderKid · 12/08/2023 14:46

@Selttan sorry to hear about your mum. However, this thread is for those of us who are dealing with our own stage 4 diagnoses; a safe space for us amongst other people who understand exactly what we are going through. There is an excellent support thread for friends and family The Storm.

Page 8 | The storm part 3 | Mumsnet

Continuing the thread, mostly supporting partners of people with cancer - just in case it's needed. The previous thread is [[https://www.mumsnet.com/...

https://www.mumsnet.com/talk/life_limiting_illness/4729740-the-storm-part-3?page=8

Bsmirched · 14/08/2023 16:14

I've just received an appointment with my oncologist for this Friday. Had my latest echo and CT scans 3 weeks ago so now I'm terrified there's bad news because it all seems very short notice and last minute! Can't remember how much notice I usually get. I hate this constant roller coaster and worry. My youngest is off to hospitality seats at the rugby Friday evening with DH for his 10th birthday and they're both so excited so I feel like I've got to keep my worries to myself.

TwigTheWonderKid · 14/08/2023 16:28

@Bsmirched it's awful trying to second-guess every isn't it? Plus that awful sinking feeling when you get an unexpected letter or phone call from the hospital. Remember the days when you could fairly confidently make plans? I feel like my life is not my own anymore.

Fingers crossed they are just being efficient. But we are all here to hold your hand.

Bsmirched · 14/08/2023 16:41

Thank you @TwigTheWonderKid . I can go days or even weeks at a time when I can do the mental equivalent of sticking my fingers in my ears and singing and pretending none of this is happening but then I'm brought up short and it all comes crashing back to the forefront of my mind.

ohimsohappy · 14/08/2023 16:45

Thought I would just join in . Had a horrible time recently , the joys of the needle missing the vein and chemo straight into the hand . Not seen until days later . Sorry will read the thread now . Just been desperate to tell someone who will understand . Hi everyone .

Bsmirched · 14/08/2023 17:26

@ohimsohappy that sounds horrible. I had a PICC line for all my chemo in the end because my veins are crap!

Bluekangaroo123 · 14/08/2023 18:49

Hi @ohimsohappy, sorry to hear that. I actually have a port because of my rubbish veins! It wasn’t the easiest going in but it does make life easier if you can bear having it.
I can really relate to the worry about scan results @Bsmirched, particularly when it seems last minute. I hate the rollercoaster too. The way I feel at the moment is as though I’m trapped in a vice with no way out. I hate it when people say to me ‘I don’t know how you do it.’ I have no choice 😭.

Bluekangaroo123 · 14/08/2023 18:51

While I’m here I am really struggling with pain from the tumour in my clavicle. I am taking oxycodone but I feel as though it’s become less effective over time. Has anyone got any tips about other pain relief I could try or request from the GP or anything alternative? I’m wondering about Tramadol as I wonder if that was maybe more effective.

ohimsohappy · 14/08/2023 19:00

Bluekangaroo123 · 14/08/2023 18:49

Hi @ohimsohappy, sorry to hear that. I actually have a port because of my rubbish veins! It wasn’t the easiest going in but it does make life easier if you can bear having it.
I can really relate to the worry about scan results @Bsmirched, particularly when it seems last minute. I hate the rollercoaster too. The way I feel at the moment is as though I’m trapped in a vice with no way out. I hate it when people say to me ‘I don’t know how you do it.’ I have no choice 😭.

I don't know how I feel when I get the you're so brave , we don't have a choice to get up and carry on , sometimes just finding the joy in small things helps to carry on.

Bluekangaroo123 · 14/08/2023 19:18

Very true @ohimsohappy. Definitely important to enjoy the small things- at the moment for me it’s a cup of tea!

Elisebev · 14/08/2023 19:59

TwigTheWonderKid · 14/08/2023 16:28

@Bsmirched it's awful trying to second-guess every isn't it? Plus that awful sinking feeling when you get an unexpected letter or phone call from the hospital. Remember the days when you could fairly confidently make plans? I feel like my life is not my own anymore.

Fingers crossed they are just being efficient. But we are all here to hold your hand.

Those unexpected phone calls are awful. I got a heart attack at lunchtime. Was sat in the office and my mobile suddenly started ringing. Oncology number comes up. I’m like wtf. Ran out the office and took the call. It was just to tell me that the ward has moved again.(they are doing renovations in the hospital).

TwigTheWonderKid · 14/08/2023 21:08

@Elisebev it's definitely upsetting that they don't realise how much of an effect these calls have on us.

Original poster
mowly77 · 15/08/2023 20:02

Hearing you on the never making plans. It’s just a whole different way of life. Over the last year I booked tickets twice for a tour for a favourite musician. Couldn’t go. Twice. Lost all the money. Twice.

I’m getting married tomorrow, couldn’t be less interested to be honest. In bed watching Fisk on Netflix & feeling terrible after the exertions of DD’s birthday on Sunday & yesterday spent running errands in the fetid heat of the southern US. All I can hope for is to load up on the drugs and stand upright until the ceremony is over. All the joy is sucked out of life at many times that’s for sure.

@Bluekangaroo123 Depending on your strength of Oxycodone you could go higher. I’m only on the lowest dose of 5 at the moment so I imagine a stronger dose would kick more pain out. Tolerance is a bitch. I’ve taken tramadol after past surgeries - it was great at first but now I don’t get on with it at all, it makes me feel very odd — but everyone is different so it’s worth a try. I take it you’ve been through Oramorph for top-up pain & the slow release morphine tablets? At some point I was on Butec patches which come in different strengths which constantly release pain relief over a week or longer I think? They definitely worked and were a suggestion from my GP when the oramorph wasn’t quite enough but I didn’t want to jump straight to the oxycodone.

The clavicle is a bitch. I have a tumour on my sternum that really gave me gip but it’s under control now. Unlike my pleura and lungs.

Back from the beach, back to being depressed. It’s the stage IV cancer emotional rollercoaster.

OP posts:
Bluekangaroo123 · 15/08/2023 20:21

Oh wow @mowly77, I can’t believe you’re getting married tomorrow! I think I would feel exactly the same as you, I couldn’t be bothered 😂. It’s awful isn’t? It’s hard to get excited about anything. Do let us know how it goes won’t you.
Thats so helpful about the pain relief, thanks so much for responding. I’m so glad your sternum pain is under control now. I did see the radiotherapy consultant yesterday who was really cold & robotic & made me feel terrible. But she said I could go up on the oxycodone too. I don’t seem to get on with morphine/ oramorph as they make me feel very sick & groggy. But other consultant did say I could take anti sickness with it as an option. I will ask my GP tomorrow about the Butec patches- great suggestion.

Bluekangaroo123 · 15/08/2023 20:25

PS. Sorry you’re back to being depressed. I can really relate as I’ve felt very low since finding out about my recurrence & been very tearful. Everything feels sad & bittersweet. I might up my antidepressant too I think. It’s tough, really tough. Things that make me feel better: watching trashy, TV, having a bath, classical music, a nice cup of tea or coffee. If anyone has any other suggestions I’m all ears!

ohimsohappy · 15/08/2023 20:48

I find reading books really helps me , or if my concentration is rubbish reading stuff on MN helps ! Especially if a funny thread crops up 😁

HerbalRefreshmentt · 15/08/2023 21:18

Those about to start Cape, just wanted to provide a bit of a general warning because no one flagged THIS side effect to me - but it can cause mood swings., anxiety and depression. And not just a haha PMS/menopause mood swing, more like a scary 0-homicidal in less than 2 seconds over stupid, trivial things level of mood swing. I got caught in this the last few days (and it was BAD yesterday), but 24 hours after my last dose it was like I was me again. Ill be raising it next week with the oncologist and hoping adjustments over time will help, but if you feel like you are losing your marbles, you likely aren't its just the drug.

Also - whats the deal with pain relief? Is that always a GP thing? I could do with some valium honestly - who do I ask for that?

bookwormcrazy · 15/08/2023 21:38

An honest thread? Definitely one I need, but not because I have cancer. My partner has stage 4 cancer and was diagnosed 3 1/2 years ago! Can I still join in?

I can relate to the never being able to make plans. We try, and fail every time. By the skin of our teeth we managed to get to see Peter Kay a few weeks ago which we booked last year. We have given ip booking anything now. Too much of a risk.

Original poster
mowly77 · 15/08/2023 21:42

Thanks for the heads up @HerbalRefreshmentt dear god though this drug is sounding worse and worse! That sounds horrible, I am sorry you are going through that. I had insane homicidal
mood swings in first trimester of pregnancy & with my sudden surgical menopause so I’m sure my brain is primed for some more. It’s scary isn’t it - it feels
like you’ve lost all sense of reason?

And given my track record with treatments I have no faith Cape will work either so that’s a fun thought.

I love how they don’t flag these side effects. They never do. And they seem super surprised when you tell them, like, well that can’t possibly be the case, it wasn’t in the text book I studied.

Yes, my lovely GP gave me a prescription for Valium. 5mg. I usually take two for a 10mg dose though as when I need it I really need it to work. I never ask for more than 28 a month, often less, and it hasn’t flagged anything on their system yet. My GP is very good and very amenable & gives me anything I ask for mostly. I hope yours is the same. I do feel with a stage IV diagnosis there should be no issues with handing out the drugs. A potential benzo or opiate dependency is really the least of my problems & luckily my GP seems to agree. I hope yours is good too Herbal.

Oh and I am sure as a woman of the world you know this but the tolerance is ridiculously fast with Valium. I can get away with 10mg once a week and it’s still
all good. If I end up taking it two or three times a week or a few times in a day (yes it has been known, some days I need to be a zombie) it doesn’t work so well. I haven’t yet asked my GP for the 10mg extra good shit which would last me longer but now I have another failed treatment under my belt I will probably ask her. My panic attacks are real enough.

OP posts:
Original poster
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.

OP posts:
Original poster
mowly77 · 15/08/2023 21:50

Oh and same with pain relief Herbal. It all
seems to be the GP. So get you a good one. They get copied in on the hospital letters so can check what the current situation is. Each hospital trust is different however — my consultant at the Marsden was most put out that he had to write me a prescription for letrozole the first time I went there, as at the Marsden that comes from the GP. But at my previous trust it came from them with the pablociclib. Go figure, as they say.

OP posts:
HopefulSeller · 15/08/2023 21:52

I know this is for people going through stage 4 cancer, and not friends and family. But I just couldn’t skip this without just being human I guess and giving out my really heartfelt thoughts and warmest respect for each and every one of you on this thread going through this, but with such dignity and practical support. ❤

I have some medical knowledge of cancer, (bit outing) so will watch it just in case I have any practical help. But you all sound pretty up on how to cope and choose your treatment plans and decisions. I have a relative with terminal cancer and I will tell her what a lovely forum this is in case it helps her.

Much respect to you all and wishing you all the best days you can. 🌻

Bluekangaroo123 · 15/08/2023 22:29

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

Bluekangaroo123 · 15/08/2023 22:30

Someone has just suggested to me asking the GP to refer to the Macmillan nurses as they are apparently amazing & not just for end of life care. They can provide info & advice on pain relief. So I might ask GP to do that tomorrow. I need to get back in to reading @ohimsohappy . Agree that a funny thread on MN is a good distraction!