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

[SewingBees]

New thread!

Quiet weekend for me. My daughter is with her dad so I had a nice long lie in this morning. Now browsing MN and listening to 'my' music and lounging on my lovely comfortable sofa with the dogs for company. Comfortably Numb at the moment, Stairway to Heaven a moment ago.

There's a Christmas market on locally but I don't know if I can be bothered. I think I would only be able to do it justice if I took my wheelchair and I can't be arsed getting it to the car. I'm thinking of buying myself a manual light wheelchair in the new year. The powered one is brilliant for anything hilly but a bit heavy and bulky in some situations.

I have a few little things I need to get for my daughter's stocking though, a parcel to pick up and a food shop to do, so I shall probably find the energy in a little while.

For those that aren't on the Facebook group, I'm sorry to share the news that @GoldenDog1 passed earlier in the week. She was in a hospice and her family were with her. The cancer spread very fast for her in the end.

I’m having a quiet weekend because on Tuesday I’m getting married. I’m still mostly bedbound with this blasted herniated disc. Getting more mobile but can’t be uptight for too long at all. One of my witnesses is in charge of the oramorph on the day. It’s going to be very small - about 10 of us at the registry office 100 yards from our house. Then cake & champagne back at ours. Then just me, DH & DD going out for a nice supper if I’m up to it.
someone’s coming to my house today to do my brows - I sent them a photo of Dennis Healey & pointed out I was at risk of being mistaken for him in my wedding photos.

@SewingBees Thank you for posting this sad update about @GoldenDog1 as I am not on the Facebook group. Not being in pain and being surrounded by family love is all we can aim for in the end but it just reaffirms the relentless reality of stage IV. 🤬 I have been thinking about death and dying so much in the past month or so, it has really been consuming me.

@Sausagesforever Amazing news that you are getting married - I hope you have an absolute blast of a day. And you totally made me LOL re: Dennis Healy eyebrows.

I am back in the cancer assessment unit because my port is refusing to behave. It has gone all raw red again and I think the redness has spread outwith the port outline a little bit. They took my bloods but it will be a while for the results to come through as they are rushed off their feet. I just don’t understand what could be causing this, it seemed to have gone down in redness since my last chemo on 5th December, but started flaring up again as I had finished steroids. And it never used to give me any bother whatsoever, everyone kept commenting how well it is working and looking. So, it got jinxed obviously. 🙄 No other obvious signs of infection but who knows, they say you can have an infection without the classic symptoms.

@Sausagesforeveryour Dennis Healey comment made me chuckle. He did indeed have super huge eye brows!
Have a lovely day on Tuesday; cake and champagne sounds perfect. Oh and congratulations! 🥂

I will miss @GoldenDog1 she had a great sense of humour and was a generally lovely member of our thread. As you say @balkanscot to be pain free and surrounded by loved ones, is all we can ask. I hope your port starts to behave, they are meant to make life easier! 🙄

I will be discharged this evening with a 7-day course of antibiotics. 🎊 Expect me moaning about oral/vaginal thrush, sickness and diarrhoea for the duration. I have just come through the other side with Carboplatin side effects and have been looking forward to eating normally again and not feel nauseous.

I just wish this port would f *off and tone down the redness for a change. From not being admitted to CAU for almost 3 years, to being admitted 3 times since September (once for COVID, once for D&V, and now port issues), it has really shaken me up no end. I think that’s partly why I have been obsessed thinking about death and dying.

Can I just rant about this… It was MIL’s birthday last Wednesday and my DS asked her over the phone how old she was. Cue all the usual crap of “You don’t need to know”, “It is rude to ask how old someone is”, “I am 16”, etc. I wanted to shove the phone up her a*e. She turned 81. I do not care if somebody asks my age, the only thing I mind is that I will never live to 81 and that it is a bloody privilege to live to 81. Ageing is awesome and I would give all of my limbs to reach 55, never mind 81, I would be shouting it from the rooftops. People just don’t understand.😔

@balkanscot you’ve been heard. Dick Van Dyke is 100 my partner tells me today. I scorn and reply “ what is it with all these people living into ripe old age”
Then I remember others who have died much younger and calm down. I even think of my own parents who are in their 70’s and are reasonably fit and well.

But I have this anger toward my younger brother and I know I need therapy because I’ve turned very bitter. He’s NEVER had any health issues to date. He has NO idea what hell I’m in. He DOESN’T care. He gets to live his high life, whilst I struggle to keep going. I want to go NC really.

Apologies, I digress. You are right @balkanscot, old age is a privilege, something to be celebrated. People don’t get it.

People at work talking about retirement gets to me. I was in a group of people the other day, all talking about what they would do on retirement. I just don't join in. Someone then turned to me and asked me what I would do and I said I'd be very unlikely to reach retirement. Cue stunned silence and someone clumsily changing the subject.

Fuck em. They were being hugely insensitive.

I don’t drink, smoke , I do eat too much but mostly of the right stuff, do long distance swimming. I have a sister who is much older than me, who I dislike intensely, always have done. She chain smokes, drinks like a fish, has never knowingly moved her body. What the hrll gives her the right to be living to a ripe old age when I’ll be lucky to see my daughter finish school.

Don't get me started on the king, why does a 77 yr that's had all the privilege in the world get to recover from cancer when me at 55 is dying? Not to mention the 100 yr old down my road who uses the ambulance service like it's a taxi . Boils my piss!

Agreed! I have no time for any of them. It’s so not fair.

Oh and how does 85 year old Cliff Richard get to be cancer free??? Also not fair!

Agree with all the above.

My brother, who is 10 years older than me, is also BRCA2 + and had colon cancer in 2019. Successfully treated, goes for check ups every year, always good news and always informs me of that. I have to answer politely along the lines of “Great news!” But inside I am feeling intensely jealous. Jealous of my own dear brother who is the nicest person on Earth!!!!! 😩 Hell, I even feel jealous of my own mum who will turn 90 in March 2026. Granted, there are no genetic cancer mutations on her side of the family, there is a glaucoma hereditary gene, though. Which I probably won’t live long enough to find out if I have inherited it

Also feeling jealous AND angry of my late dad who passed me the blooming BRCA2+ faulty gene (loads of breast cancer on his side of family and most certainly the ones affected, including my dad, had BRCA2+ but at the time it was still early days regarding discovery of faulty cancer genes, including my dad having had breast cancer, although it was prostate cancer that eventually killed him. Jealous because he was 76 when he died, a decent old age when your children are grown up with their own families. Angry because I was doomed from the very conception. I am just SO angry at his side of family that I don’t want anything to do with them. As far as I am concerned, they don’t exist. Completely irrational, I know, but I harbour such deep resentment and anger towards all the cousins and second cousins. I didn’t even send my condolences to my cousin after his wife died (in her seventies, may I add). I lied to my brother and said I did.

@balkanscot I get you. I feel worried about my own feelings of anger and bitterness which is seeping towards my own lovely family. I’m so utterly jealous of my brothers who haven’t seen a GP in decades, let alone 3 monthly hell on earth scans. I’m jealous of the 86 old next door neighbour, of my other neighbour who had primary BC, 18 years ago and is still cancer free. Of my colleagues who haven’t an earthly clue and seem to have forgotten me. Of my gardening lady who is SO lovely and kind but admits she never needs a doctor! I’m jealous. I’m angry at my family because they now know that sarcoma runs in the family and they all died. Yeah, not happy!!!

@Enigma54 I totally hear you. My MiL went for a DEXA scan two weeks ago and was making it look like such a big deal, I wanted to throttle her for the umpteenth time. Are you having 3-monthly CT scans which tell you how much closer to the finishing line you are getting? Then shut your mouth (directed at MIL). And yes, I have had several DEXA scans, too,

@SewingBees I totally understand re: retirement talk. I have been medically retired for almost a year now (there was no way I could continue working, looking after DS and being treated for incurable cancer, all on my own). One of my colleagues retired at the same time as well but for totally different, “more natural”, reasons: 45 years of service, so he retired because he came to the natural end of his working life, something we all think we will get to and look forward to. I didn’t have that choice. I loved my job and would happily work until the “natural end” of my working life. I still can’t bear to look at the building if I pass my former workplace, I turn my head the other way with tears streaming down. As for the “lady of leisure” comments I sometimes get, the less said, the better.

I really don’t like the person that stage IV is turning me into.

No, I don’t like me either. I too loved my job and it is (was) such fun ( and hard work) at this time of year. When I was diagnosed with cancer number 2, a year ago, I was full of positivity and determination that I would be back in work by September this year. Wrong! Who am I now? What am I? An NHS number, with no hair or lashes.

<BIG SIGH> "your PIP is due for renewal, do nothing if you're better" letter has arrived today. Because we cannot possibly check the diagnosis of the person we are writing to, and save those who will not recover from these illnesses the hassle of form filling and box ticking.

I'd love not to take the spenny (and easier) Uber option 75% of the time...but I do. I'd love to stand and cook properly more often...but I don't. I'm fucking tired. Why tf wouldn't I claim something designed to make life easier so I can then do the fun stuff I want to do 🤔.

I've emailed the people who helped with the original claim, to ask for their help this time round. It's almost like they want to scare those of us who genuinely need it, off claiming it 🤔🤔. "Ring us to claim"...I don't want to ring. I just want to fill in a form...preferably online. Nothing's changed except my meds. The outcome will still be the same <eye fucking rolley roll>.

Just had my first cup of tea as a married woman. Nearly didn’t happen. DD went down with flu, I’ve got some fluid in my lungs so breathing was interesting. But a lot of drugs got us across the finishing line & it was very special.
I’m in bed in my PJs & we’re having chicken kebab picnic in my bedroom for our wedding supper.
The knowledge that I won’t get to celebrate my first wedding anniversary hit hard.

@Sausagesforever congratulations, even if it is bitter sweet. Can you live in the moment (and glow of love) for a few days?

Definitely, once I’ve got over current hiccup, I have every intention of living well until chemo starts.

@Sausagesforever congratulations to you both 🥂👏 I hope you enjoy your wedding supper, you deserve it. Sorry to hear about DD, flu is grim for sure. Live in the moment, that’s what I’m doing now. Every day do something nice, eat something nice and savour the moment. Now I’m off to find my champagne truffles which my mum sent. They are delicious 😋

@lucysmam What a pain regarding PIP renewal! I hope whoever helped you out to get it in the first place can successfully help you again. Mine was all done via MacMillan.

@Sausagesforever Congratulations on getting married!!!! 🎊🍾 Celebratory spread of chicken kebab and the rest sounds perfect. 👌

My port finally looks slightly less red this morning. I phoned the cancer treatment helpline again yesterday and CAU phones me later on to say there is no need to come in, to finish the antibiotics, keep an eye on it, yadda, yadda. It is making me increasingly nervous as I am scared my next treatment will be refused if the redness doesn’t clear up in time.

I have found December pretty tough so far. It just seems to drag on and on until we travel to the Highlands to my in laws’ place (Monday 22nd). I have found it tough to look after DS, looks after myself, do Christmas prep. It just seems I have been paralysed with fear, anxiety and general feeling sorry for myself, for not having anyone to bring me a hot drink, fluff up my pillows, things like that. Instead I had to deal with everyday life shit like taking the car for its MOT, had the CT scan on Tuesday, ferrying DS to his taekwon-do and back… I am also petrified of catching flu or Norovirus so close to Christmas. Generally my anxiety is through the roof.

Gearing myself up to watch Sir Chris Hoy documentary on BBC iPlayer tonight at 9 pm, “Cancer, courage and me”. He seems like such a decent guy, the fittest man on Earth, practically, even younger than me, yet here he is, stage IV. 2 young children and a wife with MS. I blubbed all the way through his earlier documentary that was aired just after he made his diagnosis public. This one will probably be no different.

@EachandEveryone How are things now? Is the wound any better?

Today also marks 9 years since I felt a pea sized lump in my right breast while having a shower. The hazy days of primary. BRCA2 faulty genes had stopped doing their job and started to let the rogue bastards grow & multiply.

Yes, I’ve been living with cancer number 2 for a year now. We have got nowhere with it. It just keeps on powering through the chemo, regardless. My own dear sweet lovely lovely mum, has stage 0 squamous cell carcinoma. I wouldn’t wish my cancer on my worst enemy, but today I’m thinking, why can’t I just have that, instead of this shit.