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

Hey, I hope it's okay to ask this question. Those of you who have / had breast cancer. What did it feel like? I know I have melanoma and I do currently have tumours in my lungs, and peritoneum.. I had a (shit pet scan) 5 months ago and started targeted treatment recently (yay nhs delays)

Anyway. I have a really strong history of cancer in my family. I'm 32, mg dad died at 50 from bowel cancer, his mum had bowel cancer, 2 of his cousins died from bowel cancer. My mum had breast cancer at 40 (same time as my dad had cancer.. they were actually put into the same room after my mum's reconstruction as my dad was having chemo and it was easier for visiting (I was 9).

The breast cancer history is also ridiculous. My mum had it at 40, her grandma had it at 80 (not really an issue), one of her aunts got it at 58, one of her aunts got it at 40, one of her cousins got it at 38 and died at 40 from it. Absolutely shite.

I have a firm lump that does feel a bit like breast tissue but it's also attached and doesn't feel great, it's like an identifiable lump but also feels like breast tissue ?

I feel like because of my absolute shit genetics I really need to be more aware.

Basically long story short.. I have shit cancer genetics, stage 4 melanoma and an identifiable lump in my boob, do I bother my gp because I'm really anxious about it.

@ShalommJackie I've replied to you on the other thread. Definitely see your GP or oncologist and get it properly checked out. BC presents in so many different ways, because of that it's impossible for us to advise you.

@balkanscot I have just googled some facts for your mother in law. There is about a 1 in 1.2 million chance of being hit by a bus in the UK each year, and that's not even dying.

Heart disease is the leading cause of death, followed by cancer. So she can stick that in her pipe and smoke it.

Neck pain has eased thanks lovely. I tried to do a bit much post Cyberknife, got a bit overwhelmed and crashed yesterday. I pretty much slept all day yesterday then 12 hours last night. I'm going to rest today and then tomorrow I'm going to start to try and move a little more.

@ShalommJackie Deffo go get it checked out, I know it's annoying feeling married to the NHS but you do need to get that looked at. Can you not go straight to your Oncologist and bypass GP?

Unfortunately I wasn't able to have my chemo today.
My Oncologist said no, not because of my cough and cold as all my bloods came back good but because I have to have a couple of teeth extracted later in the week and he said it would be too dangerous.
I understand it but in my head all I can think of is any delay will lead to further spread.
I am not a candidate for any other treatments except this palliative chemo so any pauses just leave me feeling anxious and scared.
It's only paused for a week but as I have a CT scan in March to see if the chemo is actually doing anything I can't help but worry.

I'm feeling lousy with this cold and cough and I'm terrified of the bloody dentist anyway so it's really not a good week.

I've womaned up and told my oncologist. I'm getting an ultrasound on Friday

HELP!

Zomorph 20mg twice a day

Can I boost the oramorph - am taking 2.5ml x 4 times a day
Thinking of making it 5ml - I remember the pharmacist saying it was still a small dose (of the 10ml / 5mg)

But this pain is awful, every movement/breath
I forgot my 3pm paracetamol and I’m paying for it now!

💪🏻

@GoldenDog1
Mine is paused for a week also
Honestly, it makes no difference

Try not to worry - stress about dentist instead!

Yes you can increase it

@Tilllly I am very stressed about the dentist and very upset my teeth are so bad I'm having to go and have extractions while I'm on chemo but presumably the chemo has played a large part in that.

I'm just feeling sorry for myself. I don't feel so good with this cough and cold.
I just wish I could catch a break and not have all this constant stress for whatever time I've got left.

Thanks for your supportive comments. My wife MAY be coming home by the end of the week. We met with the discharge coordinator today, and she confirmed that my wife's life expectancy is a "short number" of months.

The coordinator was talking about the hospice team and the home care team, but I haven't actually met these people.

In other news, high winds recently damaged the roof, and I am desperately trying to get a roofer to reply to my calls. It's supposed to rain on Thursday...

Completely get that

Bite size chunks - all you need to focus on is the dentist

Thanks Tilly I will try just to focus on my dental appointment.
Thank goodness I found you all to vent to and I really appreciate you replying x

It's a bloody lifeline for me

Yes you can. I was on 2.5 to 5ml when I came out of hospital with that reflux in December

Oh sorry I'm a day late.

I'm not in pain but I'm struggling to stay awake at the moment?

How are you doing today @Tilllly ?

Definitely better on more morphine but it makes me sleepy

@GoldenDog1 Did you manage to get your chemo in the end?

@WrenNatsworthy Good advice re: MIL.

@ShalommJackie Mine was the bog standard pea-sized lump. But there are many, many variations. As soon as I had a chat with one of the advanced nurse practitioners she booked me in for a genetic test. Which sadly came back as BRCA2 positive.

I have been feeling exceptionally weepy this week. My hair has finally decided to start shedding which upsets me no end. In 2020 when I had recurrence (still classed as primary) I didn’t bat an eyelid. In fact, I shaved it all off myself. But back then my DH was still alive and he managed to take care of our DS and deflect from my bald head. And it was still primary which now feels almost like luxury - the luxury of knowing there is an end to this shit that doesn’t involve certain death, like now. I will have to explain to my DS my baldness and wig - wig is at the ready but despite being trimmed, steamed and “ironed” it still looks so much “bouffier” than my pixie cut. Especially the fringe & the crown. I put it on today to wear in the flat while DS was at school - even though the colour is right and the cut is roughly pixie, when I looked in the mirror it was like a complete stranger was looking back at me. I am also worried what they are going to think in my Pilates class, I don’t feel like telling them, yet it will be so obvious. At the moment I’ll just stick my head in the sand.

To top it all off DS went bananas with grief last night, hugged me and sobbed “I hope you are not going to die.” I cannot tell you how that felt, I was sobbing with him feeling incredibly guilty that I will eventually have to break his heart when the time comes. The worst feeling ever. There has been a lot of guilt & shame this week, thinking about DS and the future.

Went to my usual counselling session at Maggie’s this afternoon, followed by joining Living with Cancer group. Felt good but everyone in the group either has grown up children or no children. Which can be a bit isolating.

Oh @balkanscot extremely unmumsnetty hugs to you. It's the absolute worst part of all this.

I've written a poem for DS called 'I promised you 70', which is the age we agreed I would get to, and that we shook on a few years ago. It was a promise I'm unlikely to keep. He's not seen it yet, and nor will he, until after.

All we can do is love the bones of them while we are here. There's no way I won't be rooting for him once on the other side. Nothing's stopping me!

@balkanscot I am experiencing similar to you re my daughter. She broke down on the phone when she was on holiday in last week because she missed me so much - after 5 days away. Tonight she was in tears at bedtime and telling me how she doesn't ever want to be away from me. I cannot comprehend having to tell her, one day, that I will be leaving her forever.

It's the hardest part of all of this, by far. Guilt is the right word, and yet we have nothing really to feel guilty about. We've done nothing wrong.

@balkanscot I'm so sorry you are going through that with your little one.
I don't have any wise words to offer as all my children are grown up but I am sending you big hugs.

My children obviously know and understand what is happening but in front of them I feel like I have to be positive and strong.
I can't tell them how scared I am because I don't want them to see me like that so instead I make jokes about the situation which usually go down like a lead balloon.
My children go from being angry due to delayed diagnosis and lack of care from my local hospital to being incredibly upset that they are going to lose me soon.

I didn't get my chemo but not because I was unwell but because I have to have a couple of teeth extracted today and my Oncologist said it was too dangerous.
I'll be back on it next week.

Oh @balkanscot it's so utterly, utterly crap, isn't it? It's so hard to deal with our own grief whilst staying strong for our children.

We told my boys about my prognosis as soon as I was diagnosed. I think it's been helpful for my 18 year old. The just-turned-15 year old is in denial though. He talks about his future with me in it all the time. Occasionally I remind him I won't be here but often I can't bring myself to do that.

I think with young children time is also a big factor. If you tell them too soon they think it will happen immediately and then when it doesn't perhaps they forget or decide it won't. I mean, it's a bit like that for us isn't it? If you have a time with no scans or crappy appointments then it's kind of easy to pretend it's not real. I don't even think it's a conscious thing.

I'm feeling exhausted after a few days away at my sister's. Doing activities every day was tiring, plus some emotional stuff - I've always had a slightly difficult relationship with my sister and she was cold and distant the whole time which has upset me hugely. I'm glad to be home.

I'd like to have a quiet day tomorrow, but I have two hospital appointments at either end of the day - oncology bloods and ECG in the morning and physio late afternoon. Next week I have at least one medical appointment every day, plus a conversation with my boss about returning to work. I need to go back but it's hard to contemplate at the moment.

This weekend's task will be to rest and to get my PIP form done. I'm also going to apply for a blue badge. Despite my best efforts my mobility is not improving and I'm starting to think it may not get any better. Being able to use blue badge parking bays would help massively so I'm going to ask for one. Shy bairns get nowt as they say around here.

I've been waiting 4 months for my blue Badge, don't hold your breath on that! PIP was much quicker.

@TwigTheWonderKid Hmmm, glad I'm putting the application in now then. I think it varies depending on the local authority, I seem to remember my mum's blue badge came through quite quickly.

I'm doing my PIP application, but I'm not confident I'll get much, if anything based on the criteria. I'll also ask my oncologist if I'm eligible for an SR1 form when I see him in 3 weeks time. But I was advised to start the PIP process asap as they will backdate anything you are due to the day you first enquired.