Thread #7, living with incurable cancer. Taking ALL the drugs and remembering our lovely friends

[sellotapechicken]

The other thread was full! I am waiting for the oncology assessment unit to decide what to do with me tonight. I keep spiking temps but it goes after paracetamol so they can’t decide if it’s a reaction to immunotherapy or not..

Hoping this works!

@SewingBees Good to hear from you and that you have a plan in place. Fingers crossed you can get out on Monday as planned. I can imagine it must have been terribly traumatic. Are your family on hand to help?

@Ventress Glad you got back from the hospital.

@Middleageddreameresawsss 7 weeks indeed! Beyond cruel but actually it has already been 2 weeks. I almost want to bury my head in the sand and don’t want to know at all.

I medically retired 18 months ago - I draw a civil service pension (not the final salary one, that ship had sailed before I joined). Supplementing this with PIP, plus drawing a small interest on 2 investments (deliberately left small-ish as not to be taxed). Luckily my civil service pension stated paying out before the Capita debacle. It is shit. Always thought I would stick it out until “natural” retirement. One of my colleagues retired at around the same time as me, his one was “natural” due to age. Couldn’t be more different than mine.

Lining of mouth is becoming more sensitive and I am panicking I would get that bastardly mucositis that had plagued me for 5 weeks while I was in hospital at the start of the year. I am using all my medicine I was given on discharge, plus bicarbonate of soda mouthwash, Diflam, everything! I am finding I have to avoid spicy/salty food again. Oh, yes, I also have a build up of ear wax in my right ear and have been using prescribed olive oil ear drops. I was petrified in case my muffled hearing in that ear was due to Epirubicin which can cause ototoxicity but GP confirmed it was excess ear wax. But even so, it is making me grumpy as hell, combined with my mouth. And waiting for the scan results. I just can’t get into the Summer mode.

Has anyone heard from @EachandEveryone?

Back in hospital for the past 2 weeks unfortunately’ body has had an internal battle between between infection and inflammation. After 10 days the infection has subsided, thank goodness, I did feel horrible. Off of palliative at least- I am the only non-demented person on the ward of 8!

it is getting a bit wearing so I’ve added it to my DNR!

Oh and my sister is bringing my parents over this avo @Enigma54and the hospital canteen are doing roast chicken with gravy for lunch- nice!

Only drawback is the hospital seem to think I’ve lost 15Kg. I wish. so the hospital dietician thinks I need to put on weight (I don’t) as I’ve actually put on 10 Kg!

@Ventress hope all goes well with your parents 🤞🤞 Sorry you have been in hospital, that sucks! How’s DS? If the hospital food is edible, that’s always a bonus ( regardless if you’ve lost or gained weight! 😊)

@SewingBees how are you getting on?

I’m hoping @EachandEveryoneis okay and comfortable. That’s the thing about being online, you don’t always know how people are. If you are reading @EachandEveryone, I’m thinking of you.

In other news, my sarcoma treatment has been postponed. This time, my heart function isn’t right. Been having some palpitations, so went to the GP. Had bloods and something isn’t right
( can’t remember what exactly!) I had a heart scan on Friday, so all will be revealed no doubt! Great, another thing to worry about. Oncologist thinks it’s damage due to the doxorubicin chemo, combined with chemo for primary BC, 16 years ago. Delayed heart toxicity he called it.

The utter shitness of this “ journey “ never bloody ends!

How is everyone? I’ve been hibernating away from
The bloody heat!

I’m really sorry to hear that @Enigma54is the heart form and function fixed now? I’m still in hospital unfortunately. But they are taking of letting me out on Monday. The Sue Ryder people have applied for end of life care package (carers) for me and said that I can use the palliative care offered at the local hospices. The only drawback is that to get cancer care I need to be a “real “ outpatient and be able to come to the outpatient clinic. They’ve also upped my morphine which relaxes my lungs.

how are you @sellotapechicken? The heat is horrible isn’t it? Luckily I have the air con vent pointed at me 😊

How did it go?

@Ventress I hope you have been discharged from the hospital and are resting at home.

@Enigma54 What did the consultant say? Do they have a plan to deal with this? Stage IV is delightful, isn’t it? 🤬🤬🤬 If it’s not the bastard cancer, it is the chemo/medicine.

I found out this morning, unofficially, that my latest CT scan results are good. My MacMillan counsellor had a sneak peek at my computer file, so it is all unofficial at the moment and I still need to see my consultant on 29th July. I literally bawled my eyes out when she told me. DS was getting increasingly “deranged” from it all, so it was a relief for him, too.

@SewingBees @EachandEveryone thinking of you both. 💐

Thank you @Enigma54and @balkanscot. I have been released from nhs “clink” to a 4 carer package at home. Just waiting for the hoist and chair. Had my first decent coffee this morning 😁 but the food was fine in hospital (I did not expect that!)

DS is in Istanbul- so proud of him doing this city break alone.

They are now saying no further treatment but my aim stays the same: stronger and more mobile. DH wasn’t there yesterday when I spoke to my oncologist and the BCN. DH is going to speak to the BCN today and clarify the details I have forgotten!

I hope you, and everyone else, are doing well, or as good as it gets anyway. I’m thinking of you all too xxx

@Ventress so glad to hear you have been released from hospital. Even better that you’ve had a decent coffee ☕️
( most important!)

Bravo 👏 to your DS travelling to Istanbul. Did he go alone or with friends? How did it go with your parents? How do you feel about no further treatment?

@balkanscot Can I say that is bloody good news regarding your unofficial news?? Have a wine/ beer/ cake/ chocolate to celebrate. Remember we grab the small wins and hang onto them!

@SewingBees I’ve been thinking of you and your DD lots recently and hope your treatment is tolerable x

@EachandEveryone Thinking of you also xx

As for me, sarcoma scan in 3 weeks
( great!)
I’ve had my echocardiogram and am waiting for a cardiologist appointment at local hospital. In the meantime, I’m on low dose meds to regulate hearbeat. Not due to see oncology until august now. I will have been off treatment for 9 weeks because of this damm heart issue. That does freak me out somewhat! Oh well, whatever will be, will be! 🙏🙏

Mmm.. having a really reflective day today. Kind of like, now what? Medical retirement from my little TA job going ahead, kids grown up and stuck at stage 4 dual cancer. It’s like my head wants to do so much, but my body won’t. DD graduates next week and I’m so so hoping I will be well enough to make the 3 day affair. None of this is fair!

@Ventress I was thrilled to hear you were discharged from the hospital but the rest not so much. You mean the world to me and many others I’m sure. Yes stay strong and try to eat. Calories are good!!! My family’s always shoveling something in me. You’ll always be in my prayers. Hang tough (I actually think it’s meant to be “hang tight”🤷🏻‍♀️).

Has anyone heard from @EachandEveryone? Feeling worried about her now.

Has anyone heard from forestflowerfairy? Feeling worried about her.

Apologies to intrude on here.
I was on the thread Each started which was closed on Chat. I am also worried as I "knew" her from Mumsnet as we first "met" on the Litter Tray. I only know her first name so Googling will be no help.

@Vinorosso74 We started a FB group too, but she hasn’t gotten in touch via that either. Fearing the worst now.

It’s really not like her to not respond here or in the FB group. I hope she is at peace wherever she is.

Thank you both for updating. I also fear the worst.

I hope @EachandEveryoneis at peace too.

@Enigma54 How is the heart situation? Have you had the appointment with cardiology yet? Good luck with the forthcoming scan! 🤞
Did you make it to your DD’s graduation?
I feel like a baby throwing all my toys out of the pram, screaming my head off about fairness (or lack of). I saw my brother last week and felt a massive attack of jealousy that he has been (colon) cancer free for the last 7 years. Yet he is 10 years older than me. And also carries the fucking BRCA2 mutation. Yet he has already outlived me by far. As for my mum who is 90 (I visited her last week in the nursing home), I could not get my head around that: I am her daughter, yet I will die in my mid-50’s. FUCK everything and everyone! 🤬

@EachandEveryone you are in my thoughts, wherever you may be.

@SewingBees I hope your treatment is treating you as well as can be.

@Ventress How is life at home now?

I have just had the official confirmation re: June CT scan at the meeting with my oncologist - another reduction! I SO wish this could go on forever (reduction and/or stability), and that one day I wake up and find myself never having to have treatment ever again. Can’t find an emoji for an ostrich. Still can’t think beyond August/September for any planning. I just can’t. Pavlov dog response.

@balkanscot A 4 month wait to see cardiologist as an urgent referral! Ah well, that’s that then. Any “worrying” symptoms, off to a&e I trot! 🤷‍♀️

Scan is Friday. Results and plan of action re: re starting treatment on 11th August.

I did make DD’s graduation 🧑‍🎓 Now I’m fretting because I might not make her Masters graduation!

I totally get you re: the unfairness. I can’t even speak to my brothers as they have had precisely zero wrong with them for decades and there’s me, juggling 2 fucking cancers! The bitterness I feel is immense. I don’t plan either, I haven’t the head space.

So pleased about your recent scan result, long may it last! 🙏🙏🤞🤞🤞🤞🤞🤞🤞🤞🤞🤞🤞🤞🤞🤞 How’s DS? Is it summer hols now?

@SewingBees You are still in my thoughts. As you are @EachandEveryonexx

@Ventress how are you? Is DS back from Istanbul now?

Urgh I feel sick and just grim. Hoping it’s just scan nerves and not anything horrible.

Hi all,

Sorry for the delay in responding to your kind words.

Long story short, I'm on the way out. Weeks, maybe months.

I had the 2 weeks of brain radiotherapy and hospital stay to try and address the neurological symptoms of headaches, intense fatigue, double vision and low energy and while it helped a bit I was still affected. Then last week I fell down the stairs behind my house and ended up in A and E. My bloods were all over the place and after lots of scans, blood tests etc the conclusion is that I'm now purely palliative. I'm being moved back to my local hospital so I am closer to my daughter and can spend some time with her before my final goodbyes.

Just coming to terms with it all at the moment.