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 No need to apologise to us. I’m sure there is a lot to take in and you are feeling pretty overwhelmed ( or perhaps at peace even? )

How do you feel in yourself, physically? I do hope any pain you are in, is being well managed?

How is your daughter coping?

@SewingBees you will both continue to stay firmly in my thoughts during this tough time. 💐

I’ve just had my CT scan. Not feeling optimistic, given the increase in pain of late. Will find out more on the 11th august

@SewingBees I am so upset to hear your update. I will be thinking of you in the weeks/months to come. It is a massive reality to come to terms with, even though we all live with the knowledge of where stage IV eventually leads. I hope your palliative team can make you as comfortable as can be. As for your DD and family… Such a sack of shit for everyone.

@Enigma54 Hoping your scan is stable/good. I have just got a date for my next one, 4th September. Exactly a week before my 54th birthday. An early birthday 🎁 for me. Is it just the level of pain that you think has increased? How are your bloods, do they give any indication of what may be happening?

@SewingBees You and your DD have been in my thoughts lots. Totally agree with @balkanscot this really is a true sack of shit. The unfairness is off the scale and how It affects our loved ones. We all know which way we’re heading, but honestly, the reality of having to live with that knowledge, is brutal.

@balkanscot I will have everything and anything crossed for your next scan. You WILL be stable and the next and the one after that! The fecking beast can just feck off!

My bloods don’t reveal much re: the sarcoma. I just know my pain is worse and that is scaring the entire shit out of my head! I also wonder how long before BC takes hold and then it will be a case of which one wins! It’s just hideous.

Sorry for the gloomy post.

@EachandEveryone I do hope you are at peace now, wherever you are 💐

@Enigma54 Thank you! I am SO wishing the pain you are experiencing is not connected and that the scan can give you another 12 weeks of living. I know what you mean re: pain. I think no matter how many visits to Maggie’s/MacMillan/onco-psychologist, the visceral feeling is always there, that pain equals shit. As soon as I get a whiff of any pain/discomfort the thoughts just keeps swirling around. My brain thinks that because the only thing I want I can’t get (to get this shit bastard out of me), so no point in “sitting with it” or whatever other advice is. I wish I could be more zen about it all but all I seem to do it butt heads with it. All. The. Fucking. Time. With minuscule pockets of break in between.

Just came back from a weekend in Dundee. DS and I both love it there and we both feel bereft coming back to Edinburgh where the Festival crowds are seriously ramping up. I hate August in Edinburgh and wish I could spend the whole month somewhere else but alas, Scottish schools start in mid-August.

@balkanscot I hear you and for me, pain inevitably does mean shit! I’ve tried telling myself that I can’t change a single thing about this disease, but even that doesn’t work!

Glad you and DS had a good time in Dundee. Maybe we just all need to get away more often?! Since the reality of medical retirement has hit, I’m wondering what the hell to do now. Spend lump sum on holidays or give to kids for house deposits ( they do each have a pot of cash from DP’s side).

@SewingBees I do hope you and DD are being looked after. 💐

This thread is quiet now, but I think of you all regularly.

God bless you all ❤️

Good news: Scan results stable for both cancers.

Bad news: My heart is only functioning at 40%. Hospital are stopping my
chemo until I’ve seen the heart failure consultant. I’ve been told there’s a 4 month wait. I’m terrified! Oncology are prioritising my heart over my cancer. WTAF?? I asked for one more chemo tomorrow. Was told a hard no. That one chemo could put me in permanent heart failure.

Am I meant to be happy? Grateful? Fucked off? I honestly haven’t the capacity to deal with this kind of shit!

Someone tell me @EachandEveryone is okay. I HATE not knowing what’s happening to our comrades! ☹️

@Enigma54 Fab news re: both cancers, stability all the way! Heart issues are crappiness of great proportions. Given the fact that your life depends on both chemo AND heart (yeah, I know, just call me a doctor) could they not expedite your case to see a cardiologist consultant ASAP? I can’t believe the rigidity of their thinking, sticking you on the usual waiting list. 🤬 I know it is an extremely stupid question but would you ever consider/be able to pay to go private on that matter? Would it make a difference? In terms of the faff and expense and then getting the NHS to accept a private consultation/diagnosis and then act accordingly? I mean, would it even make the private proposed cardio treatment come about any faster (as you would presumably still need to be treated by NHS)? Or would the whole shitshow just become even more of a shitshow by mixing private with NHS? Apologies for all this ranting, just thinking out loud.

It just beggars belief that there are no exceptions to the waiting list. 🤯

In other news I am getting increasingly anxious with Summer holidays coming to an end, having to jump onto the usual shit train. Schools have stated again today (Scotland) and I just want to mentally check out of the whole everyday shit straight away. I am also increasingly putting every little niggle/feeling under the microscope, especially since I have now had 2 good scans in a row and I have NEVER had 3 good ones in a row. And the forthcoming one in September would be my 3rd scan in a row. So, naturally, the brain is pulling me in all sorts of dark places.

Does anyone know if @EachandEveryone is still active on any TV threads as she was before?

When my time comes there won’t be anyone to update on here, so assume the assumable if I stop posting here for some time.

Thinking of you, @SewingBees. I hope you are surrounded by all the love from your family, and are kept as pain free and comfortable as you can be under the circumstances. 💐

I am sorry to intrude,

the last thread @EachandEveryone replied on was her own one, and that was 2 months ago.
It was not a good update as she had moved to a hospice ' up north ' ? near her Mother rather than being in her home town ( London ? )
A couple of us enquired about her cats - as they meant so much to her

I feel if she had been able to read the thread and reply again on it she would have done.

@balkanscot I believe there was / is a Facebook group that several people on this thread were / are in, and I know from past posts that family members / friends have updated to that group. I also know from past posts that family/friends have updated these threads.

@OlderGlaswegianLivingInDevon I think you are right. If @EachandEveryonewas able to
respond on her thread, she would have done. I did read that she had moved to a hospice in the north. I so wanted her to update, saying she was able to restart immunotherapy. Alas, I don’t think this will have happened.

I’ve got a heart scan on the 28th August and see the cardiologist on September 18th. I am terrified being off chemo. My pain is awful ( I’m on the Curaleaf stuff today!)

Spent today going through my finances (having been stung by HMRC for a back payment from my old employer!) In the midst of all this shit, I forgot that New Style ESA is a taxable benefit and I have in fact used all my personal allowance for this year! So, I’ve managed to split my PA between ESA and any future work payments (there won’t be any more, as my pension kicks in, this September) but now it means, that my work pension is going to be taxed for the rest of this tax year! Great eh? Like we don’t have enough to bloody deal
with! 🤬 At least my lump sum is tax free! 🤞

@SewingBees I think of you and DD daily and so hope you are pain free right now x🌺

Fucking ungrateful people on the AIBU board. Be bloody grateful for what you have. Everyone wants to see their kids grow up. No one thinks “oh crap, that’s not going to happen” except for us! Why us? Are we not deserving of seeing our people grow up too?? It’s so so so unfair!! ☹️☹️☹️🤬🤬🤬🤬

@Enigma54 I’m facing the same. I saw my pmd yesterday because in the last week i’ve gained at least 7 lbs and I have pitting edema halfway up my calves. I’m sob and just feel crummy. I will also have upcoming a CT of abd, US for both legs to r/o dvt, an US of my liver, an echo of my heart and I hope that’s it. I’m worried that I have some heart failure and need my chemo to be stopped. It’s all I have to keep my cancer from spreading (although I know that it wasn’t going to last forever I hoped for a bit longer). I agree with wanting to see our kids grow up. You’re right. It’s not fair.
I also had a few diuretics added to my plethora of drugs. For this reason I’m off to the br again. Hang tough Enigma.It probably doesn’t help but I’m right beside you praying all the way.

@Sbmpp thanks. For the first time, I’m terrified. Genuinely terrified. Again, like you, this chemo is all I have to stop the cancer from spreading. I don’t know how to think. I don’t know what to think.

I hope so much your heart will be okay, it’s an awful situation isn’t it?

Hang tough too. You are in my thoughts.

@OlderGlaswegianLivingInDevon I remember that the Facebook group has been mentioned here before - I am not a member, I just can’t face it. At the moment, anyway.

@Enigma54 I totally get you. I want to scream and stomp and holler at the bloody unfairness of it all.

@Sbmpp If it is not cancer then it is the treatment and vice versa. Ad infinitum. So sorry to hear of your situation. Keeping everything crossed there is no heat failed throwing into the mix.

i had to call an emergency electrician this afternoon due to an ancient smoke alarm whose battery was kaputt (and kept beeping intermittently to let me know that) but couldn’t figure out how to take it out, plus it was also connected to the mains and I was petrified I would touch a live wire. Even though I tripped the circuit breaker that controls it to off. Delights of being ill and on my own. £220 it cost me! A wake up call for me to update smoke alarm system according to the latest Scottish fire laws. Which will also cost me about £220 or so. I can’t deal with it all on top of cancer shit. And being by myself. And just haemorrhaging money on stupid things like this rather than on exotic holidays. The. I hate myself for thinking that as it’s “only” money. It has all disproportionately upset me.

Hello ladies, I hope it’s ok to rejoin you, I was on the original cancer threads and was also on this thread when lovely Mowly was here.

I had stage 3c ovarian cancer in 2021, the usual hysterectomy and 6 cycles and carboplatin followed by 3 years of Niraparib as maintenance chemo tablets which I stopped in September 2024. I’ve since been on a ‘watch and wait’ and all set for the onc to discharge me this October as that would have been five years clear.

However, at the beginning of June this year, I had a huge bleed into my urine which led to surgery at the beginning of July to remove a large bladder tumour. The urologist said it was bladder cancer as a new primary. I’ve had MRI and PET scans which showed mets in my spleen, liver, abdominus rectus muscles both sides, peritoneum, lymph nodes and a bone in my pelvis. It was then thought to be an ovarian cancer recurrence rather than bladder cancer so I was sent back to Gynaecology. Gynae-oncology want to be certain the bladder tumour shows the same characteristics as the ovarian tumour I had removed in 2021 so I have now been waiting nearly 3 weeks for it to be retrieved from its offsite location (mainland UK where I live) and hope it will be here and compared by this Wednesday’s MDT. I rang PALS last week after the CNS had rung me to say that my tissue still hadn’t arrived so hope that has done something .

If it is indeed an ovarian recurrence, the plan will be chemo as the disease is too widespread for surgery. It’s nearly 3 months since my initial bleed and I’m getting so anxious and worried. Thank you all for listening xxx

I’ve read the whole thread to try and familiarise myself with everyone.

@Enigma54 so sorry to hear that you are off your chemo and waiting for your heart scan, that must be terrifying, plus also being in awful pain.@Sbmpp so sorry to hear that you too have such worrying symptoms and fear having your chemo stopped. I know to the medics we are just another file, just another patient but I don’t think they understand the terror that goes with cancer. It's just 'oh we'll stop that while we investigate this' and there's never any consideration of the deep fear that strikes.

@balkanscot I hear you on dealing with domestic crap on top of cancer - I'm on my own and a couple of weeks ago my front door handle suddenly got so loose I thought it might fall off when I was locking up and had visions of not being able to lock up on the way to one of my hospital appointments. The locksmith came the following day but the handles he had didn’t fit and he had to order the right ones and finally fitted them a few days ago. It’s done now but, as you say, has disproportionately upset me. Another thing that I had forgotten from before is how expensive having cancer is so you don't need more costs piled on top of everything else.

@SewingBees I'm holding you and your daughter in my prayers .

@Fantaseai remember you well from the original thread when I was diagnosed with low grade ovarian in 2022. I’m sorry to see you here.

@AGreatUsername thank you, I remember you from the original thread too. How are you feeling now?

I am well thank you! I have been stable since recurrence 3 years ago so counting my blessings to be honest. The fear is just constant but I am managing that reasonably well I think.

@Fantasea 👋 I remember you from the Laccies thread, so sorry you had to transfer over here. Waiting times for most important news are insane - I hope they retrieve the necessary info ASAP. I wanted to write I hope it is bladder cancer, aka primary, but then realised how warped it sounds. It just highlights the stage IV world, where you think primary cancer would be “good” news. Are you currently in any pain?
I totally get you re: door handle. I had an engineer come in this morning to fit in new smoke alarms/kitchen heat detector but of course, this now leaves me with the old redundant smoke alarm that needs to be removed. By an electrician, of course! At least it won’t be an emergency one but I wish I had thought about this on Sunday when the emergency electrician was here. Now I have to pay yet another set of fees.

I have a mild cold which is sending me loopy as the mind still spirals. I am also still partially deaf due to the ear build up in my right ear. I have been using ear wax olive oil drops prescribed by my GP but it didn’t make a difference. So now I have an appointment with the community health team at my local GP practice to have it removed in 2 weeks’ time. This is also sending me crazy. Every little thing on top of cancer tends to mess me up considerably.

@AGreatUsername Good to hear from you and to hear you have been doing well. Long may it continue!

@SewingBees Also thinking of you and your family.

@AGreatUsername I'm so pleased to hear you've been stable for 3 years and hope you stay this way for a really long time.

@balkanscot thank you, tomorrow is attempt number 3 for the CNS to tell me my tissue from 2021 has arrived. My adult DD and I have thought the same about hoping it was bladder cancer and then realising how twisted that sounds. Strangely, I'm not in any pain which is something, my symptoms are raging anxiety and also I still have blood in my wee. I take blood thinners for recurrent DVTs and take it at around 7pm. By 10pm, my wee is starting to go pinky and then there's a bit more red blood in it in varying amounts. This persists until around midday the following day and then starts up again in this predictable pattern. I still have disease in my bladder so this is to be expected. I've had my haemoglobin checked a couple of weeks ago and it's still in the middle of the normal range so it must be a small amount I'm losing but it sets me off every night. I've tried the technique of not turning the light on so I can't see it but then worry I will have missed a major bleed which I would need to get investigated.

I completely understand you spiralling over your cold and also your ear, I am the same and I have only really just begun, you've had years of living with the fear. I have read that the olive oil only melts the top surface and doesn't remove the plug of wax if it's large but I would be really anxious about anything like that and it must be really frightening to be partially deaf. Thank you for understanding about my door handle, and I'm really sorry to hear about your smoke alarms and having to have the old ones removed. It's more money, arranging the appointment around everything else and then waiting for them to come and do it and that feels impossible on top of managing your health.

How is everyone getting on?

I’ve got a heart scan on Friday and cardiologist appointment on 18th September. Really hoping I can get back on chemo soon, I’m going demented, being off it!

I feel we are very much atdifferent stages of our “ journey” now. Its just such a shit unfair situation to be in.

Love to you all ❤️💐

@Enigma54 I'll be thinking of you on Friday for your heart scan. Oh dear, a three week wait for the appointment with the cardiologist is a long time. I honestly don't think they realise the agony of waiting and not knowing. I do hope you'll be able to get back on your chemo after the18th. Do you have an appointment to speak to your oncologist after this?

Well, my original tissue sample from 2021 arrived last week and is completely different to my bladder tissue so they concluded it was bladder cancer and sent me back to urology. I was discussed in the urology complex MDT yesterday and saw my gynae-oncologist today - he thinks its bladder cancer as does the pathologist, whereas the radiologist still thinks it's a recurrence of my ovarian cancer. The outcome of this is that my tissue samples and scans are now being sent to the Royal London for a definitive diagnosis which will take another 2-3 weeks. So more waiting...

Thinking of you all xxx

@Enigma54 How did the heart scan go? Is the the one where they put gel all over and you have to turn to the side being bloody uncomfortable with them pressing right into you with the scan stick and you can hear every heat beat? I can well imagine your mind spinning from being off chemo - I can picture myself doing exactly the same. I am having everything crossed for a result that would allow the chemo to continue. 🤞🤞🤞

@Fantasea A glimmer of hope in terms it may well be primary bladder cancer. 🤞Although agonising to have to wait another few weeks. In cancerland, especially stage IV one, it seems one is on a permanent contract with waiting for everything, including the inevitable (sorry, am in a foul mood).

I have been going absolutely mental regarding my 12-weekly scan next Friday. My brain keeps saying I won’t get a good one because I have never had 3 good scans in a row. Every nausea, every trip to the toilet to look down it and see what colour/consistency my poo is (I hear you, @Fantasea, with regards to looking down the toilet bowl), every everything is a cause for utter pure panic.

I want to live! 😩

@balkanscot Keeping fingers crossed for a great #3 scan. My next is in September I think.I’ve had 2 so far this year fingers crossed for a negative for me and everyone else. I just turned my head to look at my husband to say “I’m so tired of all this. The tests, meds, IV’s, scans, pokes, waiting etc. There’s something going on every single week”. The alternative would be to stop treatment which means passing on and leaving my family and I’m just not ready to do that. I understand about looking in the toilet. Also every twinge in my body being a sign of mets somewhere. Or a cough meaning possible spread to my lungs. There’s “scanxiety”, so maybe we can invent a name for toilet anxiety???? Hang tough @balkanscot!!!!!