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!

@Fantasea I’ve got you a double gin
and tonic. Come and sit with us and we shall all raise a glass to @SewingBees! 🍸🍷🥃 @balkanscot has got the crisps in; our sore mouths can just do one!

@balkanscot I hope you had success with the GP? And hoping you fired that email to the financial advisor? You and DS deserve some nice things this year. No good waiting I say, we can’t hang around with this god dammed crappy disease haunting us 24/7! I wish I could concoct a potion for us all to drink at the same time, which gets rid of the disease in an instant. Why isn’t there one?? Just why?

@Fantaseatheres no harm in wanting your pre cancer life back. I look at
“ seemingly “ healthy people and am immediately filled with jealousy! I think for me, the worst feeling, is the fear. As you say @Fantaseaits the fear that the chemo might not work. I think to just
“ hope” it will work, isn’t enough, it’s not strong enough. We need chemo which
will DEFINITELY work and that’s it. Again, not much to ask. The 2nd November, two weeks away; hang on in there @Fantasea the chemo WILL work for you, it WILL.

Thank you for saying a prayer for me tonight. My bloods are at 10.50am and oncology appointment is at 11.50am
( more like 2.30pm, the way that clinic is run!) 🙈

Love to all x

@Enigma54 thank you for your lovely kind words ♥️. You're right, just 'hoping' our treatment will be successful isn't enough and so we have to live with this constant fear. I am also jealous of everyone who doesn't have cancer, even my 92 yo mother, how bad is that?

I'll be thinking of you tomorrow morning and hope you're not kept waiting too long. Scan results appointments are bad enough without being late xxx.

@Fantasea I think jealousy, in our situation, is a normal reaction to a totally abnormal situation. I’m so jealous of my
siblings right now. Cancer, fear, scanxiety, bleeding, forced retirement, fatigue, appointments, bad news, chemo ( and all that entails!) canulas and ports. NONE of it has come their way and I’m seething underneath.

Who’s round is it? 🍸🍺
( I love our pub!)

I guess it's time I join you lot...if you'll have me at The Chemo Arms!

I know most of you know me from my thread on the Cancer board.

I do hope your scan results go well tomorrow @Enigma54 and that they are running on time.

I'm all done in from having to tell everyone the news. It's like you have to re-live it again and again and again. So I just did it in a couple of mass postings and then I put my phone on silent.

@Earlandmrsgrey I hear you. It’s utter crap. Do you want a drink? I’ve been in the Chemo Arms all day! Have whatever you feel like. @balkanscotis in charge of snacks.

Sadly, running to time and sarcoma clinic, don’t go together in the same sentence. I can but hope.

@Enigma54 With my UCLH sarcoma team; if it's bad news and you get to see someone higher up then they run to time. If it's just an ordinary pre chemo chat then you can be kept waiting and waiting. We'll see what the Southampton team is like soon. Seriously though, fingers crossed for you. And try and get some sleep.

@Fantasea Getting a date is hugely important, mentally it keeps you up and that there is something happening. I hope it all goes well and that there are no unexpected delays. I do hope your
chemo is kinder to you than mine is to me. Right now I just about feel normal, albeit with a bald spot on top & back of my head.

GP was happy with how my skin is healing, she called for a practice nurse to have a look at it, she also didn’t have any concerns. I did eat medium rare steak tonight, now I am panicking! I felt like having a steak and I hate well done one. So I have made a calculated risk. Wish me luck!

@Enigma54 Bring on all the drinks/snacks/anything else. Jealousy and paralysing fear are my two hand in hand emotions that I have been feeling every single day since March 2023.

@Earlandmrsgrey It is utter crap, telling people. Exhausting and as you have said, you relieve it with each mail/text/conversation. I have told a handful of people only precisely because of this. Same with scan results, everyone wants to know and if it is bad news, I just can’t be texting multiple people individually. I usually say it to a key person, then copy/paste to others. I can’t be arsed to “individualise” each text/mail. The Chemo Arms is open for business - I also have roasted salted peanuts, pork scratchings, popcorn, pickles, you name it. Everything my sore tongue would scream at - I don’t care!

@Earlandmrsgrey welcome to our lovely group and to The Chemo Arms, I'm sorry you have to find yourself here xxx.

I hear you on having to tell everyone the bad news, it's exhausting going over it again and again. I don't like telling people my updates as it makes it feel more 'real'. I found myself the first time around almost going into role reversal when I told people, I was the one reassuring them which is completely ridiculous. Now I don't have the energy or desire to do this, also there's nothing to be reassuring about with stage IV.

@balkanscot you're right, now I have a date I do feel more as though something is being done for me. I am dreading it but hoping I don't suffer as badly as you have. I'm relieved to hear you feel mostly normal now. I'm sorry about your hair but relieved the GP and practice nurse are happy your hand is healing. Sometimes when we have an appetite on chemo, we want to seize it as it's so rare. I did similar last night - I've been only drinking cold water for about 10 days since this appalling bleeding started and last night it was cold and I fancied a coffee. I made a really weak decaf one, it was so nice, but then worried myself silly that I'd set off another major bleeding episode and was up and down until about 2am checking my wee .

I feel we should also raise a glass to our friend @EachandEveryone whom sadly we haven’t heard from for some time. May you be at complete peace lovely lady 🌺

@balkanscotkeep dishing out the snacks, salted and roasted peanuts sounds the business! Maybe some cheese and a nice wine is needed next?

Glad your skin is healing well, that’s a relief. I’m sure you will be fine from eating the steak, I will be keeping my fingers crossed 🤞

Jealousy and fear, yes that sums up being stage4. Old people annoy me too or anyone who doesn’t have cancer or issues with their bowels ( due to opioid induced constipation, due to cancer pain!) I know, irrational and stupid, I can’t help it.

@FantaseaI know exactly what you mean about going into role reversal. When I was told of my stage 4 breast cancer diagnosis in 2023, I found myself using words like “ it’s only xyz, nothing serious” “ it will be gone soon” and so on. Otherwise I would have not coped during those initial first months.

So glad you enjoyed your coffee ( albeit a weak one). How is the bleeding today? What are we like eh? You checking your wee, me making sure I can actually wee!

@Earlandmrsgreyto be honest, The Christie will keep you waiting, regardless of the news they have for their patients. I’ve given up now and just make sure I have a coffee, crisps and a bag of sweets to hand, while I wait out the longest wait of my life.

I’m sorry It’s so rubbish for you, I really am. Rest assured, we will take care of you in Chemo Arms.

@Enigma54 yes, also raising a glass for @EachandEveryone, hoping she is at peace .

I now wonder if my role reversal the first time was a coping mechanism. One advantage of being stage IV is that I now have the experience to know what I need. I've told my sister and closest friend that I don't want anyone trying to get me to look on the bright side, there is no bright side, I need them to agree with me about how rubbish it all is and moan along with me. This has helped enormously and I wish I could say it to everyone, hard though when they're in mid-flow with 'oh but at least...'.

My bleeding comes in patches, a few appalling days and then a few not so bad days, but it's always there. I worry every time that I won't be able to wee as I fear the clots will cause a blockage, I do understand. It's strange the things we take for granted, who would have thought I should have been grateful to never worry about not being able to wee.

I don’t want to go! Can’t I stay in the Chemo Arms? 😳

@Enigma54 oh I totally get that feeling before an appointment, I'm the same. Part of me wants it over but another part of me never wants it to happen. I'm thinking of you and sending you love and strength xxx.

@Fantasea thanks so much. Gosh what a stress! I can hardly string a sentence together this morning!

@Enigma54 you poor thing, I was like that for my last appointment with the oncologist and that wasn't even for scan results. It's really horrible and another part of cancer which people who've not lived it can't imagine how bad it is.

Back home, thank goodness!
Scan report showed both cancers are currently stable. They want my heart to continue to recover, so the plan is, no further chemo until progression again. This won’t take long sadly, so I’m going to “enjoy” the next 10.5 weeks! 🍰 🍾🧀🍫🍩🍭🍦🍨🍧🥮

Back in The Chemo Arms for a drink and a bag of nuts. Mentally shattered! 😴

@Enigma54 I've been thinking about you and wondering how you had got on. I'm relieved both cancers are stable, you must be absolutely wiped out after today. It's the build up, the waiting and then going into the room and trying to read their expression before they start talking and after all that having to be coherent enough to ask any questions you might have in the light of whatever they say, no wonder you're exhausted.

I'll join you for a drink and a big bag of crisps in the Chemo Arms while we both concentrate on our reverse diet to build our strength X.

@Fantasea I think that’s a splendid idea; drinks and crisps/ nuts all round!

Honestly, it’s exhausting stuff. I waited 1 hour and 45 mins for my appointment. If it had been bad news, I would have had zero energy to ask any questions. As it was, I was rambling about wanting to get back on chemo asap. This was met with a firm “ no, your heart takes priority”. I get that, but waiting for progression seems very very scary and I know it won’t take long now. But that’s where I’m at.

How are you @Fantasea how’s the bleeding today?

Love to everyone x

@Enigma54 Hooray for stability. That must have been a hideous wait.

I spent an impromptu day in the New Forest with my sons (22 and 20). Rained pretty much all day so mostly sat in one cafe followed by another. I've eaten too much and I think my digestive system has given up on me with all the stress of the last 24hours. Everything is just sitting there. Therefore even the thought of virtual peanuts in the Chemo Arms tonight is stomach churning and I will have to settle for a cosmocol sachet instead.

I did have a good time though. And the boys got along really well with each other for once. Made me think that there is hope for them once I've gone and that they will look out for each other.

@Earlandmrsgrey don’t worry, we will keep a few bags of Chemo Arms nuts under the bar for you. Hopefully your digestive system will sort itself out in due course. Mine turns to concrete without senna or some kind of laxative.

The New Forest is a place where my daughter and boyfriend like to spend time. They are Bournemouth based and my aim is to get down for the Christmas markets. A cafe crawl sounds perfect for such rainy weather. Did you indulge in cake too? It’s reassuring to know that your sons will keep an eye out for each other when the time comes. I said to my 18 year old son tonight, that if he doesn’t start cleaning his room on a regular basis, he will indeed be living in a hell hole when I’m gone. My fault for running around after him. Call it guilt on my part I guess.

@Enigma54 oh my word, an hour and 45 minutes waiting! Of course you want to get back on chemo, I'd be exactly the same and I know how terrifying it is to be off treatment. I feel like this having seen blood in my wee at the beginning of June and will get my first chemo at the beginning of November, so 5 months later. Every day I fear I am getting worse and it's consuming me, it's all I can think about. Will they scan you in 10.5 weeks time?

I'm on one of my 'better' days with the bleeding today, thank you for asking. I've been trying to spot a pattern - something I've eaten, something I've done such as driving or lifting even though I am really sensible, but there is no pattern.

@Earlandmrsgrey your day out with your sons sounds really nice and I'm pleased you had such a good time. I'm sorry about your poor digestive system suffering with all stress you're under. Hoping your coscomol sachet will settle it and you're more comfortable soon.

@Fantasea yes they will scan in approximately 10.5 weeks time. Progression will be scary, but at least it will mean I can restart chemo again.

It sounds like your bleeding is really random, with no pattern to speak of. I remember when I was on doxorubicin and docetaxol and gemcitabine chemo. I had bleeding episodes with both chemo regimes; sometime heavy and never ending. I was beside myself with worry and even took myself to a&e. At one point, they wanted to do an internal examination. I had never gotten off that bed so quick! I told them “ no chance” I did not want them disturbing the tumour in fear I may bleed to death!

Not long until your chemo starts. I bet it feels like an eternity?

Love to all; The Chemo Arms is always open to anyone wishing to rant, cry or just sit in peace.

@Enigma54 oh dear, you poor thing, what a situation to be facing with the only way to get back on treatment is to have progression. I really don't think anyone who hasn't faced this really understands the mental toll this induces, I certainly didn't.

I'm sorry to hear you had dreadful bleeding too, it's awful isn't it. I can understand you going to A&E, you get desperate and just want it to stop. I'm relieved you refused the internal examination, that's one reason why I fear this bladder wash which I still haven't heard about. I fear any intervention will disturb the tumour and set off even worse bleeding. I'm going to be having Caelyx as one of my chemo drugs and apparently that can cause blood in the wee so I am going to have to ask how I distinguish between the chemo which is causing bleeding and what it now 'normal' for me.

I'm really dreading this chemotherapy but at the same time I'm desperate to get on some treatment. If my bleeding would stop and I could trust that it had properly stopped, I think I would feel a lot better in myself. I'm trying to get prepared. The bedside table on the other side to which I sleep has been an instore pharmacy since my first diagnosis, top drawer for prescription meds and the bottom drawer for stuff I've bought. I've done a stock take and have Laxido and mouthwash still in date, they aren't on my 'repeat prescriptions' at the GP anymore so I'll have to sort that out if they are needed. I've bought a big bottle of own brand Gaviscon as one of my chemo drugs can cause reflux. My thinking is that could tide me over a tiny bit until I could get something stronger. I've also bought some Imodium in case I need it, I'd definitely need that on prescription as it's so expensive! Constipation was a massive issue last time but at least I know how to handle that. I've also got about 10 boxes of paracetamol, I've been buying two boxes every time I do a Tesco order.

Lots of love to everyone xxx.

@Fantasea When do you start your next chemo? I hate the waiting for the next line, knowing that everything is getting bigger. I'm also in the process of changing hospitals to one that is much nearer and doesn't involve the train. So far they haven't been in touch. I hope they don't want to do any/many restaging scans.

Thanks for reminding me about paracetamol, must add another couple of packets to my Ocado order.

Off to Bingo at the local pub later with DH and DS. Need to get out of the house as the bathroom is currently being replaced.

Hope everyone has a good day with little pain/bleeding/side effects

@Fantasea Loperamide is the generic name for Imodium so you should be able to find that cheaper, although they should give it on prescription if needed.

Be careful with Gaviscon - check with your team if you take any other oral medication, as it can reduce the absorption or interact with some of them, especially steroids and antibiotics. I was put on Omeprazole but had to take it separately from other pills.

Go. @Enigma54!!! 🎊🙌🍾 I had a good feeling about it all. Giddy all up in the Chemo Arms! 🍸🍾🥂