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!

🤣🤣🤣 Drinks all round…🍾🍷🥂🍾
@balkanscot pass the snacks round 🍿🥨🫒
@Earlandmrsgrey How was bingo? Fancy a drink?
@Fantasea A large G&T?

@Ohjoyohbliss thank you for all that information, that's so helpful. I will check with the chemo helpline before I take anything, that's really good advice. I've been on Lansoprazole for years as I have a hiatal hernia. I had to have the dose halved earlier this year as it was adversely affecting my sodium and it is only just holding back the reflux so I am braced for worsening of symptoms.

@Earlandmrsgrey I start my chemo on the 2nd November, a week Monday. Oh dear, what a hassle for you changing hospitals and I do hope it's straightforward. If I didn't live in Cancerland I would be saying 'surely the other hospital can just send over your scans' but having seen the lack of communication between actual departments in the same hospital here, I can understand your worry. Hoping you enjoy Bingo with your DH and DS.

@balkanscot are you ok after your steak? I hope you are. I am now living on the edge by allowing myself a cup of weak decaf coffee morning and evening!

@Enigma54 yes please, a large G&T would be perfect!

I had a call from my CNS earlier to say she has finally heard back from the Urology consultant 4 weeks after her initial email. He isn't overly concerned about my bleeding and clots and said as long as my haemoglobin is ok and I can wee then there is no need to worry. He doesn't recommend a bladder wash due to the risk of infection. I actually feel quite relieved that I have a definite decision now as I've been in two minds for months now about this bladder wash, fearing a catheter up there could interfere with my tumour/s and make things worse.

@Fantasea I so understand everything you’re going through. I also separate my drugs similar to you. I did have chemo last week even though my platelets were even lower this time. It’s been one of the more miserable rounds. I’ve had bloody noses for 4 days and since the chemo causes me to sneeze, every time I sneeze the bleeding starts again 😝. My checks turned bright pink and so hot this time. It’s like a “be careful what you wish for” but being on it offers some hope. Prayers and love for everyone.

@Sbmpp thank you for understanding. I'm pleased your chemo went ahead but so sorry things have been so rough this time around. Poor you with your bleeding nose, any blood is so frightening, something I'm really aware of now. I had the bright red 'tomato face' on every cycle of my last chemo, my cheeks were burning hot. I was told it was a steroid induced rash. It would subside but half a side at a time so for a whole day I looked like half a tomato. I remember it was freezing here that February and I couldn't get to sleep due to my burning face, so went and lay down on the sofa. I'd turned off the heating and the heat from my face was warming the air around me!

@Fantasea You’re the first person to know what I mean about the burning cheeks! It must be the steroid I take pre-chemo. It seems like such a tiny dose. 4mg Dexamethasone. I was so glad to hear your doc made a decision on the bladder irrigation. There’s always something with cancer, isn’t there?

We won £30 whoop whoop!!!

I also get burning cheeks for the first few days after chemo. Assumed it was the chemotherapy itself rather than the steroids. It's a really deep shade of purple and burns. I slather with a rich moisturiser which seems to help.

I received a letter on my mycare yesterday. This one said 8-12 months left without treatment but with treatment median stability is another 3-5 months. I absolutely swear blind that he said in my consultation 2-3 months without treatment and 3-6 with. It's a massive difference. It's really thrown me and I've told everyone 3-6. I'll ask my new consultant what he thinks when I see him but at the moment I'm just sitting on this new information. Told my best friend yesterday evening but so far keeping it from my family. What if it's not true? I know that they can never be certain with these things but as I say, it's a massive difference.

@Earlandmrsgrey well done on your Bingo win! Oh my goodness, that letter would have really thrown me too, that's a huge difference. I can understand you doubting it and not wanting to tell anyone but your best friend, I'd be the same. As you say, nothing is definite with these things but this really is a significant difference. When do you see your new consultant, is this when the handover to the new hospital has been completed? I'm really hoping it's as fast as possible for you and you're not waiting around not knowing for too long.

In non-cancer news my dishwasher has gone wrong. I have a repair man coming out to see if it's salvageable this afternoon. I must be cursed - since June when my bleeding first started, I've had to have the complete inside parts and flush done on my bathroom loo for £300, then in July a new front door handle as it was wobbling so much when I locked up I feared it would fall off and I'd be locked out, that was £130. Now my dishwasher - it's only 3 years old so I hope it will outlive me. My exMIL always used to believe things going wrong in the house/car happened in threes, so when the third disaster struck, she'd say, 'ooo that's your third thing, you can relax after this'. I really hope she was right. I seem to lack my usual resilience to handle these things at the moment and get it out of all proportion.

@Fantasea you are living life in the fast lane with the weak decaf! I’m glad you can have a G&T too, just to mix things up a bit. 😀 I know exactly what you mean about not wanting anything interfering with the tumour. I was terrified when that a&e doctor suggested an internal examination! I am
also terrified that I will be unable to wee and a catheter will be required. It will hurt and I will bleed, I know it.

I hope your dishwasher can be salvaged. Ours gave up last Boxing Day ( and it was full of dirty dishes etc!) We had to buy a new one in the end. The tumble dryer also gave up earlier in the year too. My ‘ To do list”
has turned into a book! There are that many jobs to do in and out of the house, it’s insane! I have not felt much like tackling any of them, but the tiles on the bathroom floor which are loose and need re grouting, you cannot ignore! Like you, my resilience to tackle life stuff, had greatly reduced and I can just about manage day to day jobs!

Not long until your chemo now @Fantasea I sincerely hope you get that pre chemo call 🤞

@Earlandmrsgrey £30? Well done! 👏 There’s a lot of cake you can buy with £30 ( or of course spend it in The Chemo Arms?!)

Goodness, I’m not surprised you are bewildered re: the letter. As you say, a massive difference. Maybe keep quiet about it for now? Again, they can never be certain about these things, but nevertheless, all very hard on the brain to comprehend.

I do hope the hospital transition is smooth and they get in touch soon. Hopefully your previous hospital will have transferred all your noted over.

@Sbmppsorry to hear about your blood nose and pink cheeks, not nice at all ☹️ dexamethasone sends me loopy! I can’t switch off and I talk non stop rubbish. Then I can’t sleep! 😴 How are you feeling generally, since you had this round of chemo? When is your next scan, do you know yet?

I’m not feeling great about the “ plan of action” for me. Waiting for the damm thing to progress, until I’m back on chemo again? Urghh, it doesn’t bear thinking about! But my heart is damaged, all thanks to doxorubicin, so there’s nothing more to be said. Now k have to wait a further 10.5 weeks and go through the whole rigmarole again!

Love to everyone ❤️

Southampton called but I missed it due to the sound of a couple of dogs hating on each other in a local café. They've sent me an email instead with my appointment...only, the appt letter isn't addressed to me. Good start eh! Obviously it's gone 4pm now so I'll deal with tomorrow.

Dexamethasone makes me wappy. I'm away with the fairies, can't sleep but exhausted but not exhausted all at the same time. It's usually expensive too as I buy random stuff like you would if you had over indulged in the vino.

@Fantasea After an incident with a smoking tumble dryer last Christmas I bought a new one with a 5yr guarantee. We commented then as to which would last longer, me or it. I was hoping for a fairer fight mind.

My husband received a bit of money through an inheritance recently. We had decided to put most of it into home improvement. Hence the current bathroom refit which desperately needed doing. We've chatted about all the other things that need doing but I just can't face any of it now.

@Enigma54 I really feel for you with your non plan of action. It's bad enough having to be on a chemo break between treatment types. Is 10.5 weeks next year?

I miss red wine at this time of year, I'll be drinking a malbec at The Chemo Arms this evening.

@Enigma54 The chemo this time was rough. Next dose next Wednesday. I spend my time wondering how long it will work because this is my last hope. There aren’t any more chemos for my type of cancer. It’s taking a toll on my body though. I’m with you on the warranties! We bought new furniture about three years ago and I wondered how long it would look nice (covered it with sheets!! Which defeats the purpose of new, yeah). Plans for paint and carpet but I wonder how long I’ll be around to enjoy it. It sucks. Hang tough. Fight for every day because what else can we do.

@Enigma54 it's dreadful fearing every wee isn't it? I could never have believed I'd be in this sort of state. When I first had my diagnosis I felt such shame and I don't know where that came from. I don't have that anymore, I'm just so weary and annoyed with it all now. I spoke to one of my friends from church earlier and said 'a week Monday' when she asked me about when my chemo was starting and it does feel like it's finally close now.

I really feel for you with the plan of action you've been given and the only way to get back on treatment is to have progression, I'm so sorry you're having to deal with this. I don't think the medics understand the strain all this waiting places on us.

@Earlandmrsgrey oh gosh, that's a bit worrying with your appt letter not addressed to you! Hardly the greatest start is it. I had the oncologist's letter to the GP a couple of years ago with the wrong 'summary' part at the top, the part with the diagnosis and treatment so far. This part was someone else but the content of the consultation was clearly mine. I raised it with the CNS and she was horrified and said the patient whose appt was before mine must have been on the computer screen. It must happen quite a lot.

I'm pleased it's not just me who buys a load of stuff when on steroids. I'd shop online in the night and at the end of my treatment had about 15 pairs of new pyjamas, I kept seeing such nice ones which I just had to buy. I suppose I could be more purposeful this time and do some Christmas shopping.

My dishwasher lives on, maybe it will last longer than me after all. The repair man said it was due to 'over sudsing' which meant the cycle would stop so that the pump wasn't overheated to prevent burning out the motor. He said to run it through twice without a tablet and that would clear it. I must look really far gone as he asked me if I could be certain that I hadn't put a washing machine pod in there instead!

I’ve come to retreat at The Chemo Arms, having achieved precisely nothing from my ‘ To do’ list today. Part of that is down to being on hold to the DWP for 2 bloody fecking hours! Just to request an extension for my PIP form. My claim expires in March 2027 and they want me to fill out the next application now. I mean who else other than the DWP and NHS gets away with keeping people hanging on for half a day?? Now I have to chase the benefits advisor at Maggies centre, to book an appointment, so they can help me fill out the damm form ( booklet actually!)

Still haven’t quite grasped the fact that there is no treatment for me, until progression. That now bloody terrifies me and my head is a mess. I’ve got a list of things I need to sort; my funeral arrangements, checking my will, checking my finances. Then there’s stuff to do in the house and garden and so it goes on! It’s all too much. I think having cancer, just magnifies everything and makes things seem harder.

@Earlandmrsgrey how’s the new bathroom looking so far? I know what you mean about not being able to face all the things that need doing. I have them written down, but that’s as far as it’s got! 10.5 weeks does seem close to next year as my next oncology appointment is January 19th 2027. That’s if I’m still around by then!

@Sbmpp what type of cancer do you have? ( apologies, I think you have said previously). I’m sorry you are feeling rough. These treatments, they can be toxic to the body. People don’t understand how rubbish you can feel and then as you say, there’s the fear that the chemo wont work. We can but hope and pray, eh? So next one is on Wednesday. Is it a weekly chemo? When is your next scan? I really really hope chemo works for you. 🙏

@Fantasea I’m pleased to hear that your dishwasher lives on, that must be a relief? I must say, my dishwasher and washing machine pods, live side by side in the cupboard. I wouldn’t be at all surprised to learn that I was mixing the two up! 🙈

I’m glad you have gotten rid of the shame of your diagnosis. NONE of this is your fault. We have all been dealt with a crappy hand and trying to navigate life in cancer world, is blooming hard work.

I too go a bit loopy when on steroids. The night internet shopping is high on my steroid list. I literally buy anything
( mostly on Amazon prime!) Most of my items would fit nicely in my reverse diet ( anything sugary and full of rubbish!)!

@balkanscothow are you and DS? I’m guessing you were okay after your steak? 🥩 No more quad biking for bit then?

These opioid pain killers are bunging me up. I made a HUGE mistake of swigging some lactulose this morning. I have not been able to leave the house since!

Well, I’m staying put in the CA. Baileys, nuts, crisps, cheese, crackers ( and a loo nearby) and I’m away 😊

@Enigma54 Are you not on a SR1 for your PIP?

Bathroom refit is slow going but they are doing a thorough job. DH did tell them about my prognosis (mostly so as not to scare them if I have an emotional breakdown) and they said they'd do the best job ever!

Honestly it's chaos, water keeps having to be turned off, they're constantly coming and going through the front door so there's a gale rampaging around inside as well as out. I've lost another shelf in the airing cupboard (one went during the summer when the new boiler was fitted) as the shower pump needed a lot of extra pipework. Currently all the contents of the cupboard are in our bedroom and I can't access my clothing drawers. There's no way it will all fit back in. A towel cull will be required!

I think I've decided on some funeral plans. I've discovered a lovely natural burial site not too far from us. I've seen others that I don't like as they are all regimented with trees planted after burials. This site is a bit more wild, you can plant native flowers but can't mark the grave and you can only cut back brambles. Basically it's just left for nature to take over. Expensive but I think it's quite a good fit for me and my ethos.

My old school friends are busy organising a massive reunion for us all at the pub we all spent a ridiculous amount of money at when we were still in sixth form. I expect I'll be starting chemo that week so hopefully I want be feeling too bad.

Consultation all booked for next Thursday afternoon.

Spent most of the day trying to learn to crochet. I've tried and failed many times before but I've got a couple of kits that need doing and it did take my mind off things quite well.

Tonight I will be having a G&T and a packet of scampi fries in the CA. Might have a Tia Maria too.

@Enigma54 I'm sorry to hear you've had such a frustrating day. The DWP are something else, I once waited an hour and a half and thought that was bad enough! I also have loads I need to do in the house and garden - I've just done my housework (and my emergency repairs) since June when all this bleeding started and not started any of my 'to do' list. I have a load of junk in my garage which needs to go but the effort of texting my usual clearance man seems beyond me. You're right, having cancer makes everything so much harder and I seem to have completely lost any resilience I had.

Oh yes thank you, it's such a relief having my dishwasher back. It took me a whole hour to wash up the full dishwasher load by hand the other night!

I'm sorry to hear you've overdone the lactulose, it's so easily done as it doesn't work fast enough so you take some more. Hoping things settle down for you soon.

@Earlandmrsgrey I've been thinking about getting an SR1. Who is the best person to ask for this?

I'm hoping your bathroom will be done as soon as possible for you. I would hate the mess and with the gale blowing through your house too, but the thought of a new bathroom is really nice.

Good news you have your consultation booked for next Thursday. Did you speak to them about the wrong name on your appt letter? I'm hoping chemo can start really soon for you.

I'm going to have my usual double G&T and a large bag of salt and vinegar crisps in the CA tonight. I might also have a couple of mini Twister ice lollies, I fancy those for some reason!

I've just realised, we named our pub the Chemo Arms and CA is the medical abbreviation for cancer, how insightful was that!

@Fantasea SR1 was offered by the Doc at my last consultation although the CNS who was present was surprised I didn't already have it. I had asked at my previous consultation prior to my last scan and they refused as they thought I had more than 12 months. I think it really depends who you ask. If I had gone through the CNS team a few months back then I think they would have completed it. I suggest you just try emailing your CNS team and see what they say. Ironically I phoned DWP for a PIP form last week in order to try and claim with written evidence. At least I don't have that bit of paperwork to do anymore.

I did get an apology for the wrong letter. Not the greatest of starts and communication was one of the reasons I didn't move to this hospital earlier in my treatment as I had heard bad things.

Enjoy your mini twister. Never liked those myself!

@Earlandmrsgrey thank you so much for the advice on the SR1 .

I went for a Fab lolly as I fancied that instead when I had a rummage in my freezer! I need to sort out my freezer, that's also on my 'to do' list!

Survived the steak affair, only to be completely burnt to the ground by DS getting a reconditioned iPhone and messing up his iCloud password. I have been running ragged to the Apple Store for 2 days in a row which resulted precisely in nothing. I got late DH’s fellow techy friend to come over tomorrow to see if he can untangle it all. Lord give me strength, to be spending my break week on this shit!

Will come back to you all when I have recovered. I HATE TECHNOLOGY! 😡

I’ve found you all! I thought the thread had disappeared, couldn’t access it. Don’t know what happened.
ive been having a shit time of it. Finished chemo in July, had the summer off. Started to get ill in September, scan showed cancer was growing again. Referred for next level of chemo. Spent a total of 26 days in hospital during September. Managed to get well enough to start chemo again.
due to have round 2 this Thursday, sat was blue lighted to hospital with chest pain & not breathing very well. My breathing has got steadily worse but this was something else.
a tumour on my left lung has started growing and causing trouble. So far my left lung tumours have been stable.
i have a rogue tumour in my right lung which causes off the scale pain. Am on so much morphine now I’m often high as a kite.
consultant today said he didn’t think the chemo was working and in which case I’ve got a couple of months at best.
so we’re going to give it one more round and see how it does then, otherwise it’s time to prepare for the inevitable. For now I still choose joy where I can find it.

@Sausagesforever I’m pleased you found us but oh crikey, you’ve had a proper rough ride, sending hugs! None of this is fair, none of it. It’s an endless battle of chemo, falling ill, recovering, getting back on chemo, scans and so on. This is going to be me soon, dreading it all.

So are you having chemo this Thursday?
We have a virtual pub “ The Chemo Arms”. You are welcome to join us any time you like. Drinks, snacks, a place to vent/ share joy or crappy times; all available 😊🍿🍸🥤

@Sausagesforever I'm also pleased you've found us. I'm really sorry to hear you've had such a terrible time, being in hospital for most of September too, you poor thing. You've really been through it xxx.

The Chemo Arms was inspired by a virtual pub which was created on the main cancer thread about 5 years ago, I can't remember if you were on that? We couldn't remember what it was called so opened a new one!

@balkanscot oh my word, I'm really sorry to hear about DS's iCloud password, what a nightmare that must be for you both. I wouldn't know where to start with something like that. I'm really hoping that your DH's friend has sorted it and you can have a few days of peace before your next chemo.

I’ve heard of the pub from previous threads but wasn’t around 5 years’ ago. I’ve gone from diagnosis to palliative in less than 3 years.
i lived long enough to see DS off to uni, although inevitably I was in hospital the day she left so didn’t get to say goodbye. But she’s flying high & having an awesome time and that’s all I need to know. Next goal is to reach 1st wedding anniversary on 15th December. Reckon I’ll make it but not sure in what state.

Welcome to the Chemo Arms @Sausagesforever. I'm so sorry that you've joined us and have had a horrid month in hospital. Hopefully the chemo will take the edge off the pain. I hate being here along with everyone else but it's a safe space to vent and that in itself is comforting.

Day 3 of ridiculously busy week sees me off to lunch with an old school friend. Yesterday was coffee with 2 friends from military fitness classes we did 12+ years ago, then lunch with another couple of friends. Sunday was a family day with the in-laws...even managed a small glass of wine rather than a virtual one. Tomorrow I have a Uni friend visiting from Wales.

Tiling going up in the bathroom. Looking good!

Pain increasing in my back and liver area but still managing on paracetamol. I've got morphine but not cracked it open yet. Once the paracetamol kicks in I feel absolutely fine and can't believe that I've only been given months.

@Sbmpp Sorry to hear you have had a rough ride on the current chemo. How often do you have it? Steroids make my cheeks so red anytime would think I am right wino. And I can kiss sleeping goodbye. I may taper steroids off after this chemo cycle gradually rather than stop them dead after 3 days. I can definitely feel myself crashing out after I stop but on the other hand, I hate taking steroids, the powdery tiny not going down my throat fuckers.

@Earlandmrsgrey I don’t know how I would react to actual prognosis with numbers. Did you ask them for it or did they just say it thinking you are better to know? I was told I had a few weeks when I was gravely ill in hospital at the start of the year, when my bilirubin was skyrocketing, I had an infection and was riddled with mucositis. Strangely, I didn’t care as I was in such pain from mucositis that I thought just get me to a hospice. Glad that bathroom refit is going well, regardless of your prognosis, having a lovely bathroom that you can enjoy is worth it, it is the small things that people who are not in life
limiting cancerland just don’t get.

@Enigma54 How are you feeling now? Is the pain still the same or has it lessened somewhat? I have a good feeling about your chemo and heart.

@Sausagesforever What dreadful time you have been having! 💐 It is a shit relentless disease alright. Even if there is still the tiniest hope left that the chemo may do something, take it, believe in it. I know it is easy for others to say this. Keeping my fingers crossed. 🤞 Meanwhile, make yourself comfortable in The Chemo Arms, take all the snacks and drinks you need.

@Fantasea Less
than a week to go before you finally get into that chemo chair, I hope it all goes as planned and that there aren’t any more delays.

Yes, DH’s friend sorted everything out. Turned out DS hadn’t changed his iCloud password after all. I don’t know how I managed to stay sane.

I forgot to mention I also had a
flat tyre on top of all this iPhone malarkey. KwikFit mobile tyre fitting service couldn’t get anyone out until yesterday (flat tyre happened last Thursday evening), so I contacted some local company that came along in 30 minutes. £230. It seems I have been haemorrhaging money this month, it truly does. But not on diamonds & pearls, on stupid things like flat tyres and the like. I was parked in a pay for parking bay that even my Blue Badge wouldn’t save me from being fined.

Oh, one last thing that made me murderous this morning. Went for my bloods at 10 am and managed to get the last BB parking spot just opposite the ward. An old codger comes up to me and ask in an irritated tone of voice “Are you going to be long?” I said yes. He then came up to my car, circled it around (I am guessing to “check” if I had my BB displayed - I did, not that it’s any of his business) and then walked off. Fucking stupid bastard, just because I appear “healthy” and am not crawling on hands and knees and don’t appear “old”…. Urgh, it made me want to push him into the road. The fucker. I have enough to contend with without being checked over if I am worthy of parking in a disabled parking bay with my BB. 🤬

Was hoping to be discharged today but spiked a fever last night so another 24 hrs to go. My CRP is still rising however they could just be the new inflammation I have in my left ribs.
@balkanscot i hate steroids, they turn you into a total loon, you don’t sleep for days on end, you feel like the air is made of sludge and you have to crawl through it but the alternative is something I don’t want to engage with.
i love taunting BB idiots. One of my friends who drives me to a lot of appointments plus takes me out for a coffee etc drives a very flash Porsche SUV. People get furious seeing her park in a blue badge space, then we ship out the cars. Then she gets out dressed very cool then she comes round to my side to help me get out and into a wheelchair and they have to stomp off sulking that they didn’t get to rail at some entitled Karen😂

@Sausagesforever oh my goodness, that's very fast, I'm so sorry to hear this. I'm also hoping that the chemo will help you with the pain. That's so hard for you with your DD going off to uni when you were in hospital, another thing that cancer has taken from you. I can understand you taking comfort that she loves uni life and that's what matters.

I'm really hoping your fever will come down and you can get home tomorrow.

@Earlandmrsgrey it sounds as though you've had some really lovely visits and good news that your tiling is looking so good. Have they given you a timeframe for completion?

I'm sorry to hear that your pain is increasing. I know what you mean about not believing how seriously ill you are - I'm the same, I have disease in my bladder, both abdominus rectus muscles, liver, spleen, lymph nodes and bone (and that was from the PET scan in July, there must be more by now) and yet my pain is minimal. I am dreading when it really gets going, I'm not good with pain at all.

@balkanscot yes thank you, just got to get round to Monday. I have my pre-assessment on Friday, a phone call any time between 9am and 5pm. I'm going to phone tomorrow in a needy way and ask if I could request a morning call, I'm sure everyone wants this but I think it's worth a try.

Oh what a relief about DS's password, I would have been going insane. I'm so sorry about your flat tyre too, and the final insult of a parking fine on top. How is it that we are all plagued with these extra things when we are going through so much?

Oh my word, how insulting to be challenged over your BB space and circling round your car is outrageous! Just because you don't look 'ill enough', I'd have wanted to push him in the road too.