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!

@Enigma54 I also crave salty foods and love savory and don’t like sweets especially dark chocolate 😩. I love the cafe names. I’m so so sorry you are in this spot and it’s so not fair. I’m putting your name on the prayer list. God knows who Enigma54 is!!! Balkanscot the jury duty makes me laugh: amidst all that’s going on there’s that jury duty notice, bold and beautiful! My dh just received his too btw!! He’s my driver and handler and I don’t see an uber helping me into the docs office. Nor would I be allowed them for a procedure. Which leads to this: (sorry for rambling) I had chemo yesterday. I was supposed to be having a colonoscopy today. Unfortunately my prep instructions weren’t given to me just Monday. On those it said to let the GI team know about the chemo. I told nurse, she contacted gi doc, gi doc calls oncologist. Gi doc wants me off chemo 4 weeks before and 2 weeks after Colo. I’m just smh saying no no no I don’t want my chemo stopped. How could gi doc not know I was on chemo? She did my EGD a month or two ago. I feel like it’s “damned if I do and damned if I don’t”. The Colo is for some bright red bleeding I had months ago. I’m terminal. My chemo is palliative. I’m grateful I’ve made it three years. My oncologist said way back when that you can never predict what cancer is going to do. I’m afraid that skipping would give that nasty bas cancer a chance to throw just one tiny cell to my lymph nodes and then it grows. So I thank you if you’ve read this long. I still don’t want to leave this earth, with my dh, dds and dgs. We mums should get to live.

@Fantasea I like them all but “Last Hair Standing” stands out. My wispy hairs seem to fall out as soon they pop back in. I’m usually spitting them out 😝.

@balkanscot I shall be thinking of you tomorrow for your scan and am keeping everything crossed for a good result for you . I'm pleased to hear you can hear properly again, being partially deaf in one ear must have been really frightening.

Another one here to add to the jury service summons! I had one just before my first diagnosis of stage 3c ovarian cancer and was consumed with anxiety due to all the uncertainty and waiting. I wrote to them myself to say I was having prescription meds (only beta blockers but it sounded good) and therapy that my GP had organised for a probable cancer diagnosis. I also got the 'well ok then, we will excuse you this time' response. How have we all been summoned like this?

@Enigma54 I'm really sorry to hear that your pain is so bad, it's barbaric to leave you like this and there must be something they could try. It makes me so cross that these nurses say you can't have a medication for a reason and so you're left to try and sort out where you can get help. Apologies if I'm way off but is this something your GP could help you access in terms of putting you onto someone who could help you?

@Sbmpp oh my word, what a mess! How could your gi doctor not know about the chemo? Of course you don't want the chemo stopped for 6 weeks, no-one would be happy with that. I just despair at the total lack of communication between different departments, I am very familiar with that here in the UK.

I had a call today from the gynae-oncology CNS to say my case wasn't discussed at yesterday's MDT, she didn't say why, so is going into next Wednesday's one. Another week of waiting for me then .

The invites to jury service are bizarre, but today I was invited by my GP (by text message) for an over 50s health check 🤦. A week after the palliative care nurse requested a GP home visit to ensure everything is in place and coordinated for end of life care.

@Fantasea More waiting??? I’m spittin’ mad for you 🤬

@SewingBees I'm really sorry to hear that things are so poorly managed with your GP surgery, it's so unkind and tactless and really shouldn't be this way. I do hope you're comfortable and free from pain xxx.

@Sbmpp thank you, I feel I'm in an eternal queue .

@Sbmpp What an utter mess! Sometimes it does feel like we are just numbers in the game, not people. I wholeheartedly agree about stage IV mums, I need to be there for my DS. Asking to be around until he turns 18 is a pie in the sky but to have lived to see him turn 15 next April would be amazing. Although I refuse to settle for so little but I also have to be realistic. Fuck realism, though.

@Fantasea it all seems to Kafka-esque. It it brutal.

@SewingBees I am so happy to hear from you, albeit not in the greatest of circumstances. The ineptitude seems absolutely mind boggling. I hope your days (apart from the said debacle) are filled with family love and comfort in terms of pain being under control. I often think about you.💐

I can confirm that this week can go in the bin already. Dealing with HMRC, the courts (I have finally got the excusal letter from the GP), DS school (fellow pupil winding him up) and homework, buying the wrong tickets for a football match I will be taking DS and a friend to…. And, of course, being mega grumpy & anxious out of my mind waiting for my scan results… I want to scream! 🤯

@Enigma54 How is the pain? I hope palliative team have managed to concoct something.

@balkanscot you poor thing, it sounds as though you're having a terrible week already, it sounds like one thing after another. All that on top of worrying about your scan results must mean you're under enormous strain. Have you been given a follow-up appointment for them?

I think you're right, it feels to me that we aren't people but just a pile of files. I suppose to the medics it's just their job but it does feel so cold and heartless most of the time. I'm hoping that my case will be discussed at tomorrow's MDT and then I will get a call on Thursday to tell me my fate. It could be any time of the day so I'll carry my phone round the house with me all day like a teenager .

Lots of love to you all xxx.

In hell with pain! The bloody pharmacies have decided they have “ forgotten” to order in my meds. Oh and then they “forgot” to order it again! Fuckwits! So let’s leave cancer patient, in excruciating pain while pharmacy at surgery write me a paper prescription and make me search all the bloody pharmacies to see if they have my meds in stock! No I can’t do this.. no no no!! I haven’t the stamina!!!!!

@Enigma54 I'm really sorry to hear this, it's completely unacceptable to leave you without your meds and then expecting you to search around trying to find somewhere that stocks what you need. It's times like this when we just need some help, someone to take over and do the basic thing they are supposed to provide and not just shrug their shoulders .

@Fantasea I know. I’m losing the will to keep going. Pain, meds, bowel issues, pain, more pain, appointments, cardiology, living in 3 month blocks. I mean WHO does that???? Oh I know, me, us, cancer patients. Well f*k it, I’ve had enough ☹️☹️🤬

@Enigma54 you poor love, you must feel utterly defeated and pain is so so awful. How did you get on with your search for your meds?

@FantaseaThankyou for listening. I have written today off ( too exhausted and too many bowel irregularities to leave the house!) But tomorrow, I will seek out my meds!

How are you? 😊

Everyone else , I do hope you are okay and to those whom we haven’t heard from for a while, may peace be with you and hoping the cancer hell is well and truly over for you. Xxx

@Enigma54 oh you're most welcome and I hope you have fast success tomorrow, I shall be thinking of you.

I'm ok, I'm still waiting for them to decide whether I have stage 4 ovarian or stage 4 bladder C. I had my call from the CNS last Thursday to say my tissue samples were still being tested at the Royal London and she will call me this Wednesday or Thursday with an update, so yet another week of waiting. I am so utterly sick of waiting, I had my PET scan on the 25th July, I'm still bleeding in my wee and feel so tired all the time. No pain (yet) which is something. Thank you for asking xxx.

Lots of love to you all .

@Fantasea all this waiting, it’s insane and so unfair on you! So will you know which cancer you have, once the samples have been tested and the results in?? And no results from PET scan as of yet?

Is the bleeding bad in your wee? I hope you get some answers soon; keep us updated @Fantaseax

@Enigma54 and @Fantasea i am so so sorry to hear about the waiting and the search for pain meds. I don’t understand why the pharmacy doesn’t have pain meds around the clock. nor the long wait for Pet scan results. It’s so important as to treatment that the oncologist has those results asap but I’ m just another pt who’s waiting too. I had an appt with my palliative care dr today. I explained the talk I had with my GI dr last week and my reasons for not having the Colo. She agreed with me. What’s the point of having it if I would not have further tx? I already have an incurable cancer. So no more stupid test. Unfortunately, too, my platelets dropped too much for me to have chemo Wednesday. Once again one step fwd and two steps back. I pray for all of you to get your pain resolved quickly. I’m also adding you all to the prayer list: “Mumsnet mums with cancer”. Our Heavenly Father knows each of you by name.

@Enigma54 yes, once they've finished testing my samples, this should confirm whether it's a recurrence of my ovarian or a new bladder C. I'm sorry, I wasn't clear, the PET results came back which prompted the urology MDT to send me back to gynae as they thought the spread of disease appeared to be ovarian. Then I had the wait for the comparison of my bladder tissue with my ovarian tissue from 2021 which took about 3 weeks, then another MDT, and now my scans and samples are at the Royal London where they've been for 3 weeks so far. The bleeding in my wee is every day, mainly in the evening, overnight and in the morning, but on bad days, all day. I also drip blood from my ureter at random times so have to wear a pad which is a pain. I take blood thinners in the evening which make the bleeding worse but can't stop those or I risk another DVT. I had a hysterectomy in 2021 so am not used to seeing blood and it freaks me out every time I see it, you would think I'd be used to it by now . It looks like loads but my haemoglobin is still good so they aren't concerned.

Hope you're feeling a bit stronger today and have some luck tracking down a pharmacy with your meds.

@Sbmpp I'm relieved to hear that the palliative care dr agreed with you on the colonoscopy but really sorry that your chemo couldn't go ahead, that is really disappointing for you. Have your platelets recovered enough for you to have it tomorrow? I too am praying for us all, I try to name everyone so your idea of 'Mumsnet mums with cancer' is what I'll do now.

@Fantasea apologies for being a bit thick, I think I understand now. Well, it’s a right old rubbish situation eirher way, isn’t it? Was it a full hysterectomy you had then? I only ask as I had a full hysterectomy in 2023, EVERYTHING removed as the “ fibroid” which they initially diagnosed in uterus, was looking rather suspicious. It was indeed a rare and aggressive leiomysarcoma. That was that, no treatment required as they had to deal with the metastic BC in lung. Fast forward to November 2024, the f**r was back in pelvis and uterine cavity. Inoperable. So two incurable cancers have landed on my plate. Two DC, 18.5 and 21.5, shit for them but @balkanscot has a 14 year old DS and that’s shit too, as with @SewingBeeswho has a young DD. I’ve spent so much “ why me” that im
either raging or crying ( or both!) Being in pain, makes it all real.

Are you still working @Fantasea or medically retired ( no need to reply to that) I know what you mean re: the bleeding post hysterectomy. My first
( failed ) chemo made me bleed. Well I totally freaked out as you have, what a shock!

Okay, time to hit the supermarket and pharmacies 💪🤞

@Sbmpp happy to be added to any list which prays for me. I’m sorry your chemo has been delayed, it is most frustrating isn’t it? Hugs x

@SewingBees I hope you are still comfortable and pain free? That’s most important I think xxx

@Enigma54 please don't apologise, it was me not being clear. Yes, a full hysterectomy in 2021 together with my omentum and peritoneal mets. I was told I was incurable then but I've had a clear run up until now and I'm conscious that's a lot longer than most people get. If they decide this recent episode is bladder C, then I too will have had two incurable cancers. I do really feel for those with younger DC, my DD is grown up. Nothing is fair and I too have thought, and am thinking, 'why me' - I've never smoked, don't drink, vegetarian, reasonably active and an acceptable weight, also BRCA negative. I decided to retire in 2021, I was self-employed. Thank you for understanding about the bleeding, it's driving me bonkers.

Best of luck with the supermarket and pharmacy, hoping you can get your meds quickly and easily xxx.

@Enigma54 @Fantasea I wasn’t clear about the chemo. I thought yesterday was Tuesday. I was a day ahead 🤷🏻‍♀️. I was presuming that I wouldn’t (or won’t) get chemo tomorrow (Wednesday). I still don’t think I’m making sense. Enigma I hope you were able to get your pain meds. I hate seeing anyone in pain when there is treatment for it @Fantasea Hope those results come today.

@Sbmpp I get my days muddled too! Thank you, the CNS said to me last week that she would ring me tomorrow or Thursday. I think Thursday is more likely as it's the MDT and clinics tomorrow, plus she mentioned she's on her own this week, there are usually two CNSs in the department.

@Fantasea any news on your tissue samples yet? X

@Sbmpp how are
you getting on?

@Enigma54 thank you for asking. I've just come on here to update you all - I've had a call from the CNS to say that I was discussed at the Royal London MDT and they have decided it's a recurrence of my ovarian cancer. I have an appointment to see my usual oncologist next Wednesday to discuss chemo. This wasn't the outcome I was expecting as I thought it was bladder C, but relieved that I'm with the team I've known for the last 6 years. I'm now onto my next worry which is the side effects of chemo even though I don't know which drugs I will be getting. Mostly, I want it all to go away.

How did you get on sourcing your meds? I really hope you had fast success X.

@Fantasea how do you feel about it being a recurrence of OC? I’m guessing the bleeding is coming from the vagina (?) if you’ve had everything removed? Hopefully the chemo regimen won’t be too harsh on you.

I got my pain meds sorted thanks. However, I’m not convinced that they are working as well as they should be. Maybe I need a higher dose, but with that, comes more constipation! Urggh! 🙈