Thread #6, living with incurable cancer, taking ALL the drugs, and remembering our fallen comrades

[SewingBees]

New thread!

@balkanscot I'm so sorry to hear all you've been through. It must have been really scary for you and your son.

I am also terrified of epirubicin. I actually have a recurring nightmare of seeing it injected into the IV line. I'm catastrophising completely, but it's one of the treatments for lymphoma, which I've convinced myself is the cause of my neck swelling up. The other side is starting to swell now too. Ultrasound is next Monday and I'm going slightly crazy with the wait. In my constant attempts to look on the bright side I was relieved that IV chemo is not often used for Stage 4 breast cancer and had convinced myself I'd never have to go through that shit again.

I'm seeing my counsellor tomorrow, there will be tears and anger.

Had a CT scan today, it took 5 attempts to get the cannula in. I think I need a port now.

I’m finding this whole process difficult. My sister won’t let me tell our parents that I’m dying so I’m not bothering to deal/speak to them because… I can’t be honest so what’s the point? Apparently the fact I told my mum my blue badge had been approved was “triggering” so my mother has brought it down on my sister.

please bear in mind my sister has primary breast cancer and is a year into her journey and doesn’t need the hassle either.

just frustrating.

I think I’d like to go back onto chemo. The anti-hormone tablets hurt my chest and I can’t breathe properly anymore much less get up the stairs. The menopause is hurting (again) too. Plus reading the puerile nonsense on on boards is really getting me down.

what do you all do? I want to live what is left of my life as best I can but feel really prevented. Perhaps I’m just being rubbish but I need to protect my son and my husband from this.

sorry, I’m feeling sorry for myself.

Not peurile on life limiting or cancer - but on other parts of this vast forum. sorry I’m not in a good way at the moment and my I apologise for my outburst.

@Ventress I just wanted to let you know that I hear you and am sorry you are feeling rubbish. Is there a reason why your sister doesn’t want to tell your parents how unwell you are? It sounds like you would like to be honest with them and there’s nothing wrong with that. Maybe she just wants to protected them?

Can you speak to your team about going back on chemo? They are meant help us feel relatively well whilst on treatment, but that can be a challenge.

Would counselling help you to organise your thoughts and feelings? It’s not for everyone, but might give you a bit of head space? Protecting others is exhausting, plus you need to protect you in all of this.

I would steer clear of the other boards if you are feeling fragile. MN is vast and it can be easy to get caught up in all the toxic/ childish rubbish.

I just take a day at a time. Much of it is spent dealing with my pain, keeping my bodily functions working and keeping on top of the basics in life. Some days, it feels like an existence, not a life..

We are here if you want to vent etc..

Thank you @Enigma54i think my sister just wants the easiest life possible (and who can blame her?) she has a job and teenage children. She also has primary breast cancer for which she went through a lot of treatment last year, hopefully she has come through the other side now. She is much better at not telling them anything. I guess I just don’t want a harder life for her. She lives closer to my parents and is very good with them. what I don’t understand is why they are unhappy with something innocuous I say it has to be enlarged and given to my sister to as an issue. My (nuclear) family just feel as though we should stay out of the way. I just feel as though whatever I say is wrong.

Perhaps you are correct about counselling? Have you tried it? I must admit I haven’t tried it although I have been offered.

I have the impression that my sister wants to bury her head in the sand. I can’t blame her for this either - I wish could do it!

Thank you for replying. I appreciate it. I can’t help you all with your operations and other procedures but I am thinking of you all and I am steadfastly in your corners. Wishing all of you the very best x

@Ventress I think one of the worst things about dealing with serious illness, is how the rest of the family will react. There is this need to protect them, to hold our head up high and say “ I will be okay” etc etc. When in point of fact, things are not okay. I guess it’s how we deal with the “ not okay”, which matters. Maybe your sister appears to be holding her head above water, whilst swimming madly without a paddle underwater? She feels the need to keep going, all will be fine and for you to steer clear, I don’t know. She has to recover for her own family, your illness is another obstacle and one your family don’t need to deal with?

My own brother ( who lives 150 miles away ) never asks how I am, never. Maybe he’s genuinely too busy; his life is “ normal” with a job, girlfriend, mad social life, mates etc etc. My world is tiny, no matter how hard I try to make it bigger. But the truth is, we live a world an apart and he doesn’t want to know that I have no hair, am bad tempered and pretty awful to be around. Instead my partner bears the brunt. Maybe brother does care, but finds the truth hard.

I have thought about therapy, but never acted on it. I keep thinking how an earth could a therapist possibly know what I’m going through? In truth, they probably can’t. The idea is that they offer you that “ safe space “ to rant and rave. The jury is still out for me. You need to connect with the right therapist @Ventress and then it could work?

How is your son? Am I right in thinking he’s 18, the same as my boy?

There are no answers, I don’t think.
Are you emotionally close to your parents, even though your sister lives close? x

God almighty my cancer nurse has just been to see me. She said shes been talking to my medical team and they want to know what my expectations are and i said i would fight this infection and restart the immunotherapy. She stopped me and basically said if you get any more infetions there wont be any more immunotherapy. Im devasted I thought I had more time. I cant stop crying. She said that open wound means im more prone to infections which goes against the immunotherapy. I feel sick i cant see any good news in this.

But if you get through this infection you can restart the immunotherapy @EachandEveryone? I’m sorry you had this visit from your cancer nurse but this is something you can fight back from 💐

Agreed, @Enigma54. Knowing the right, very fine , line is difficult. I think my sister wants to compartmentalise. Again, I don’t blame her. It keeps everything nicely segregated, I have arranged to pick sis up on Saturday and we can go through what is left of the paperwork. For some of it we need the person who owns the account (dad usually) . They moved in November and I did do all of this move , so I don’t feel too guilty, although sis has done most since then as I haven’t been too well.

My blue badge arrived today. DH is happy as it does make our hospital trips a little easier.

You are correct- I think our sons are both 18 now. We still haven’t done anything for DS’s birthday. Not sure about your son @Enigma54but mine is ignoring me/this situation completely. I’m guessing your son has A levels soon? I’m looking forward to going to an offer holder day for DS next month. I’ve got 3 days booked in a hotel which should be good. Fingers crossed the weather is okay. It’s a 6 hour drive to the other end of the country!

I sort of understand your brother’s reaction. Does he ever engage with you? I would probably engage more if I knew what my sister wanted from me. But I don’t want to “put my foot in it” and say the wrong thing making it more difficult for her.

Just a quick check in post more than anything - I'm not not posting because of anything bad - I'm just not posting because I have a court date to be given a date I'll become homeless & am incredibly stressed but last time I discussed something other than cancer I alienated half the posters so I just haven't bothered.

I'll check back in properly at some point, hope everyone's doing vaguely ok xx

Have you got support from citizens advice? I hope you’re ok

Oh no this is the shittiest news ever. Do you need to stay in or can you go home?

Shelter might be able to help? Or CAB? That’s a stressful situation to be in @lucysmamand not what you need. Keep us posted xxx

Well that’s crappy news.. hugs from me. You fight the infection as @Ventress said, take all the meds to get shot of it and then get back in the saddle with the immunotherapy. This open wound, it’s not fair how long it’s been going on. Can’t they give you something to stop further infections?

No she was very negative compared to my consultant. I havent had a run of immunotherapy because everthing keeps getting in the way.i need to fight this and also those community nurses need to pull their socks upthey really shouldve done something when the smellwas horrific and the tumour popped through.

ive noticed ive started to feel nauseus do ypu think its all the tablets?

@EachandEveryone Isn’t someone responsible for not treating this awful infection to begin with ? How they have expected you to live like this with the smell and everything, I don’t know.

Are you going to be prone to infection after infection now? They have to treat this wound and somehow prevent the tumour from protruding through, so you can crack on with immunotherapy.

If you are on strong antibiotics , they could make you feel nauseous.

@EachandEveryoneim a bit confused why the community nurses did so little to help and let it get so bad you were in ICU??

Ditto. They could have seen how bad it was with the smell etc. Sounds a bit negligent to me?

My DS girlfriend works for Shelter (hope this isn't too outing!), she is in court daily fighting for her clients, it is an amazing charity, please contact them if you haven't already.

@SewingBees How did it go when you met your counsellor? I am meeting mine from Maggie’s next week, hadn’t seen her since early December and will have to relive the whole sorry hospital experience by telling her all about it. I am also seeing an onco-psychologist in mid-March. Because I don’t have an adult living with me I tend to accept any kind of counselling that comes my way. It is my way of letting it all out in front of an adult. To an extent I also do this with my friends but I don’t want to just talk about being stage 4 to friends, hence counsellors.

With regards to telling or not telling parents/friends/relatives, my brother and I have decided not to tell our mum who will be 90, is blind and in a nursing home. And is slowly getting forgetful. When I went to see her last Summer I hugged her and said guess who? She couldn’t remember! 😩

@lucysmam You got some good advice from posters above: CAB or Shelter seem like good options. It is shit that on top of cancer you and your family have to deal with that as well. Let us know how you get on at the court.

I had my 3rd round of this “weak” Epirubicin yesterday, this time they gave me 2 steroid tablets and Granisetron, they only gave me Granisetron when I got my 2 first doses. Maybe because my oncologist said this this at the 3rd session Epirubicin dose would be slightly increased. Staff in chemo ward didn’t have an updated info on my current weight, so the pharmacy had to make up another dose to suit my current 57kg instead d the usual 64kg. On the lookout for any side effects. Nothing apart from paronychia, inflamed skin around my nails which is mainly mild but I did develop 2 blisters around my right-hand thumb. Advanced nurse practitioner advised to soak it in warm salty water for 10 minutes twice a day. New port works well, but still looking quite bruised.

I am trying very hard not to think about the fact that I may be actively dying after the scan results (if results are crap as most often than not they are) that are due in late April. I love my life however crap it is, even as a widow.

@balkanscot my counsellor is a private one I pay for myself, but she specialises in cancer - patients, family, friends. I've only been seeing her a short while but I can really confide in her. There were tears as predicted, but I felt better afterwards.

I don't have anyone I can really speak to in real life. My mum was never very good to talk to - very unemotional and to be honest she doesn't really listen, just waits for a gap in conversation to fill with her own news. My sister is marginally better but we're very different people and learned behaviour means we fall into certain patterns of behaviour, like her being disapproving of my choices and/or making me feel judged. I have 2 close friends but one is on the other side of the world and the other has a lot of other crap going on in her busy life. And I took am the only adult in my home, but I don't regret that, I never want to live with a man again.

I was at the oncology unit today for my 4 weekly blood test so I vented to them a bit. They were lovely.

I have a specialist onco psychologist too. Absolutely amazing person. I found him via Maggie’s but now see him privately. I am “lucky” I live with a supportive husband and have amazing friends & family who are with me every step of the way but nothing replaces having someone you can sob out your deepest ugliest thoughts to & obviously are at the deeper & darker end of the spectrum.
i also go to a group run by a psychologist which is for incurables but that’s a bit of a misery fest.

@Sausagesforever I went to a stage 4 breast cancer group run by Maggie's and came away feeling 1000% worse than when I went in.

@EachandEveryone how are
you getting on? Are you still in hospital?

Yes the antibiotics have been changed to Linezolid they’ve hinted they are a last resort so I don’t know what happened after that? They just chuck me in the Thames,I’ve had the most horrendous reflux for the past week I’ve been begging for anti nausea meds. Gaviscon etc, then I thought to myself have they actually been having my 40mg of omeprazole? Well what do you all think. Of course not it was deleted the day I was admitted, I’m fuming