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!

@balkanscot you got it! That is the very scan! Covered in gel, having to pose on ones left side with arm behind head, taking random deep breaths, whilst being poked with a scanner
” thingy”! I see the cardiologist in 3 weeks ( 18th September) and hope to god I can restart chemo!!

I am literally willing your scan result to be good @balkanscot It WILL be fine and you WILL get to live.

@Sbmpp yes it’s funny you mention what up said to your husband because I said the exact same last night. My sarcoma pain was insane and I was just ready to give in. Was talking euthanasia and all sorts. I just thought, this is an existence, rather than a life. As the pain increases, so do the meds, so does the constipation and crikey, there are only so many damn kiwi, laxatives and pints of water one can drink! Ive booked another appointment with Curaleaf
( “alternative” pain meds) although I don’t know what else I can take now!

I will be rooting for you re: your next scan @Sbmpp 🤞🤞🤞🤞

@Fantasea I’m so sorry I’ve not replied to any of your messages on the thread. I do indeed have an appointment to see oncology after the cardiologist on the 18th. Oncology is 22nd September and I’m so hoping to get back on chemo
( never thought I’d say that!)

The waiting is brutal, I agree. So it could either be bladder or a recurrence of ovarian? What treatment are you on now then? Or will you start chemo once the results are back? I so wish mine was operable. None of this is fair ☹️

@Enigma54 I'm really hoping your heart scan went as smoothly as possible and you're home resting now. I too am really hoping that the result means you can get back on your chemo as soon as possible.

@balkanscot you're right, it is permanent waiting and I'm sick of it already. No wonder you're panicking about your scan next Friday and monitoring yourself for symptoms, I would be the same. I'm sorry you're also inspecting the toilet bowl after every trip, it's so exhausting isn't it. I'm even worse now, watching my wee as it emerges now, I'm sure none of this does us any good. How is your DS and is he back at school now? I remember you saying it was earlier in Scotland.

@Enigma54 sorry not to have read your update before I posted, I left my message half written to eat my supper and have just finished it, sent it, and then seen your update. I'm relieved to hear you've had your heart scan and you have the oncologist lined up a few days after the cardiologist. I'm so sorry to hear you're struggling so much with sarcoma pain, that sounds terrible.

Yes, so it could be stage 4 bladder cancer as a primary or a recurrence of my ovarian cancer putting me at stage 4 for that. I am not operable either so it would be chemo for whichever one it is and I will start this when they can make their minds up which one it actually is.

@Sbmpp I'm so sorry you're struggling with everything too, it's all too much. I was at the point in my first diagnosis when I had at least one appointment every week and it takes over everything, but then I felt so ill, I wasn't up to doing anything but lie on the sofa or bed in between anyway.

I'm so relieved I'm not alone in the toilet anxiety - how about calling it looxiety?

@Enigma54 I see you’ve had a few scans:). I hope your pain will get under better control. The constipation thing drives me batty too. I have to admit my diet is not the best. I just go for whatever gives me calories.

@Fantasea I love looxiety!!!! I have a colonoscopy next week. It’s going to be a long week checking that tb 😝.

@Sbmpp looxiety it is then! Oh dear, a colonoscopy sounds grim, poor you, I've not had one of those. I did have the bowel prep for my ovarian cancer debulking surgery in 2021 so I know about that bit. I really hope that and the procedure isn't too bad for you.

My diet isn't the greatest either and I love rubbish food. I have already lost some weight and with chemo looming I'm also concentrating on calories. I had such bad constipation last time on chemo, so painful, so dreading that.

@Fantasea Oh man oh man, I don’t want to imagine what “debulking surgery” means. The colonoscopy isn’t bad because you’re asleep but the prep is something else. I’m just hoping it’s negative. I already have esophageal cancer and from what I’ve read people can and do have more than one cancer. Sobering. The constipation drives me crazy too. Hoping to pick up clues to combat it.

@Sbmpp The debulking surgery was for a hysterectomy, omentectomy and then all other visible ovarian disease. I had the bowel prep in case I needed a bowel resection but escaped that. Oh yes, the prep is something else. I am relieved to hear you'll be asleep for the actual colonoscopy and really really hope it's negative.

When I was on chemo last time, I took Laxido sachets and Lactulose liquid for constipation. I used Laxido for the severe blockages and Lactulose on just normally constipated days. Once I'd got it under some control, I would eat half a tin of pears as my pudding in the evening. Constipation sounds so minor but it was one of the worst parts of chemo for me, that and the sickness. What have you tried so far?

@Fantasea I ‘m in shock! I do the usual fleets, dulculax, prunes, Metamucil and then I just wait for two weeks and finally success. I haven’t really told my oncologist but the nurses at chemo ask the same questions about it aid 🤷🏻‍♀️. Omg, how long did it take to recover from your surgery? I feel there are so many cancer surgeries that seem like nightmares. I feel so bad for all of you and bless your hearts. The surgery for my cancer would involve removing the esophagus and turning the stomach into an esophagus. With all the complications involved. I don’t understand why but just cutting out the part with the cancer was not an option((no lymph node involvement).. It’s a 10-12 hr surgery and my I would never eat normally again. Plus I would still need a peg tube. After all that my five year survival outlook was 30% chance of living 5 yrs. I looked at surgeon and said “no surgery “. So my cancer will never be cured and I’m alive as long as I’m on the taxol. I think all of the mums here are incredible. You are so strong and have had to work, care for kids, arrange for transportation, find child care etc and I feel like a sissy compared to you. Hang tough everyone.

Looxiety is truly alive & well over here. 👋 Sticking my head down the loo to analyse colour & texture. Extrapolating all sorts from this. Just call me consultant medical crapologist. Suffering from silent reflux also which is a well known side effect of Epirubicin. But no, in my head it is because of bile/bilirubin/all sorts of liver related.

I could not stomach Laxido, it was just too foul tasting. I think I survive on Laxido if things get too bunged up.

I had to get out of the flat this morning despite the rain, ended up in the hospice cafe. Same hospice my DH was in, same one I will end up in eventually. It is kind of comforting and terrifying at the same time.

@Sbmpp Wishing you a good scan!!!! 🤞

@Sbmpp I completely understand why you've made the decision about your treatment that you have. We all have to make the choice which is right for us and our family, there is no right or wrong. I do understand your thinking over why they can't just remove the disease as you have no lymph node involvement either. I have been told I'm incurable and inoperable However, I do have disease in my lymph nodes so I suppose that is why I'm only being offered chemo. How often do you have the taxol treatment?

I was in hospital 4 nights after my surgery and it took about 12 weeks in total before I was recovered but still had terrible fatigue.

@balkanscot I'm really sorry the looxiety is bad for you too, and I too have my head down the loo every visit. I'm also doing the extrapolation from my observations. I'm also doing a 'one legged wee' so I can see it emerge and can then add whether there's blood at the start or throughout and use this in my analysis. It's all driving me bonkers and I'm so sick of it all already.

I'm really sorry about your silent reflux. I had dreadful reflux yesterday morning after I took my Lansoprazole (for a long-term hiatal hernia) while still half-laying down in bed and then convinced myself I had disease in my stomach.

Laxido is disgusting isn't it? I put a small glass of water in the fridge for a few hours, then stir in the sachet. The coldness makes it just about bearable but I drink it over the kitchen sink just in case. There was a lady on the threads in 2021 who did a 'Laxido shot' where she would make a tiny amount in a glass and then chug it back in one with a water chaser.

You poor love in the hospice cafe where DH was and where you will go. I can understand you being comforted and terrified at the same time . I felt like this when I saw the gynae-oncologist on Wednesday - being back in the world I've known for 6 years with the staff who know me yet terrified of what they will say and what's ahead.

@Fantasea Taxol is every other week with breaks in between for the days when my blood counts are too low. Seem to be more frequent lately. Oncologist says it’s possible bone marrow suppression that they watch for. Cancer is such a beast.

@balkanscot Hugs and handholds to you. I wish we could meet and be cozy.

@everyoneI wish would all meet and just “ chat”. 😊

Im in awful pain still. Not sure what to do? It’s fairly constant now and driving me batshit crazy! Is this the start of the end, I’m asking myself??? 😬

*Meant wish we could all meet.

@Enigma54 I'm really sorry that you're still in such awful pain. Pain is really frightening and so tiring .

I also wish we could all meet for a lovely chat. I remember years ago, on the main cancer thread, we were all fantasising about a special pub for us all. It served all the drinks we were craving and all the food we fancied eating on chemo. One of the ladies named it but I can't remember what it was called now.

@Fantasea maybe we need to recreate the pub right here? Give it a name, menu ( food and drinks/ snacks ) and anyone can pop in ( or out!) as we wish? Might make this god awful experience, more manageable? A bit of lighthearted humour/ escapism?
Chat Gpt suggested these names:

  The Chemo Crew

• The Brave & Boozy
• The Infusion Inn
• The Hair Today, Gone Tomorrow
• The Fighting Spirit
• The Bald & Bold
• The Chemo Arms
• The Hope & Courage
• The IV League
• The Treatment Tavern
• The Stronghold
• The Warrior’s Rest
• The Positive Cellar
• The Last Hair Standing
• The No-Hair Affair

Any of them appeal?

@Enigma54 oh yes, that's a great idea, anything to make this more manageable! Chat GPT has come up with some good names hasn't it? I think from that, I'd choose 'The Infusion Inn' or 'The Chemo Arms'. How about you?

@Fantasea I like ‘The Chemo Arms’ too! Anyone else?

Think this could be a great idea. As you say @Fantaseaanything to make this shit show, at least a bit manageable.

Next, food! At the moment ( whilst off chemo) my appetite is fairly normal ( as long as I treat my oxycodone liquid, like shots, one after the other!) But during chemo, I have developed a taste for strong salty flavours. Lots of cheese, crisps, halloumi, chips, mango, Greek yoghurt and omelettes with smoked salmon. I love spicy food, but chemo from last year, seems to have permanently destroyed my mouth and anything remotely spicy, now stings ( a lot!) ☹️

Obviously my selected foods, are not all healthy, but hey ho, I don’t care 😊

On chemo, I craved spicy foods like curries but I didn't have problems with my mouth to contend with. I also ate a lot of jacket potatoes with cheese, also salt and vinegar crisps and strangely craved lettuce which is neither spicy nor salty. I really liked cold things, so perhaps a freezer would be nice with a selection of ice-creams.

I've just realised non of my choices, well apart from the lettuce, are healthy either but as chemo patients we have to prioritise our calorie intake. Also, I don't really like a lot of healthy food anyway!

@Sbmpp Me, too. And everyone else as well. In the meantime the tavern will do. Swearing is compulsory. And all the crisps and pork scratchings and roasted salted peanuts in the world!

@Enigma54 I seem to throw in everything and anything into me when the side effects ease off. Sometimes I feel like a dustbin. But as you have said, don’t care. Although since my awful mucositis at the start of the year anything that I eat that is remotely spicy hurts twice as much. Same with adult toothpaste, strangely enough. I have to use children’s toothpaste as the flavour is much milder. Sorry to hear about your pain, is your palliative care team able to up any of the pain killing drugs?

My scan is tomorrow at 8:15 am!! And then… who knows?

On top of everything else I got my jury duty summons letter this lunchtime. For the second time since I have been diagnosed. I got a snarky reply then (despite a letter from the GP) saying something like “OK, THIS time we’ll excise you but next time we won’t”. Ha! I phoned my GP practice a few minutes ago and requested a new excusal letter. Fucking jury duty, don’t they have a pool of non-stage IV-ers to choose from???? On top of my widowhood, looking after a bereaved 14-year old and having no family nearby. Argh!

I was so incensed about getting that jury duty letter that I have missed out the editing window because, finally, after almost 4 months of being half deaf in one ear due to ear wax build up, I had it irrigated this morning! 🥳 I can finally hear equally rather than feel like I was permanently under water. Small wins and all that.

Hard agree! Swearing is compulsory! Absolutely love roasted salted nuts and crisps; the thicker and saltier the better! Also cake; cream/ custard slices, carrot cake, walnut and coffee cake, yep, just cake all round!

@balkanscot I received a jury summons too! I told them no, I’m stage 4 x 2 cancers and struggle to even sit down right now!!! They have excused me, hurrah! You have more than enough going on @balkanscotso let someone else help decide a persons fate! How is your DS? Will be thinking of you tomorrow morning and rooting for a positive result! 🤞🤞🤞🤞🤞🤞

Palliative team are trying to help with pain meds. There’s an anti inflammatory available, but having checked my renal and kidney function, the nurse said no, she can’t prescribe as my functions are not good ( ?) Great! They are just going to let me suffer then!!!!!

Glad you can hear again, that horrid under water sensation, is grim!

Really hope @EachandEveryoneis in a place of peace now.💐❤️

Oh and in case some random is reading this, PLEASE SAVE ME FROM THIS LIFE ( sorry EXISTENCE !!!) It’s SO hard to carry on, but DC need me/us. Bastard cancers fucking bastard shite cancer! It’s NOT fair!!!😬😡😡😡😡