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'm rather shocked it is a recurrence of my OC rather than bladder C. I'm mostly sad and worried about everything. The bleeding is definitely coming from the urethra, my looxiety is raging and I watch every wee I do!

I'm pleased you got your pain meds sorted but sorry they aren't working as they should. I remember the appalling constipation from the first time around, it sounds so minor but was one of the worst things for me.

@Fantasea I understand. I was the same when my leiomysarcoma reoccurred. It was meant to have all been removed via the hysterectomy. To see it back again in my pelvis, within less than a year, was a shocker! I think my uretha may be obstructed by it too! ☹️

I won’t teach granny to suck eggs, but yourself a notebook and pen and make a list of all the questions you have for next week. Also lists of important names and numbers of CNS etc. Find out about your chemo and what it entails. You/ we can do this! 💪❤️x

@Enigma54 thank you for your kindness and understanding. I'm sorry to hear you think your urethra may be obstructed, it's always something isn't it. Any twinge is setting me off now. Good idea about the list of questions for the oncologist, I'll write them down as they come to me. I'm still under my original gynae-oncology team so I already know them and they know me, which makes it a little easier. However, the chemo line and all of those numbers will probably have changed.

How are you feeling now? I'm really hoping you can get something else for your pain X.

@Fantasea yes I always find a good notebook with lots of questions, helps me stay in control. Hopefully
the chemo won’t be too harsh on you. Ask about cold capping ( if it’s a hair losing chemo and you want to hang onto your hair?) Is your hospital far? Mine is between 45 and 60 minutes away; far enough! Do you have good support IRL? I do hope so 😊

I bought some lidocaine patches. They are okay but probably not strong enough. Not sure what the answer is yet, it seems never ending doesn’t it?

I’ve got my cardiologist appointment tomorrow. Hoping that they will allow me to recommence my chemo. I’ve been off it since June!

I do hope you can start your treatment soon @Fantasea you may feel more in control and proactive when you do. X

@Enigma54 I too take a notebook to appointments so I have my questions to hand and also to write things down, it's so easy to forget once I'm home. I'm also hoping the chemo won't be too bad, it's really worrying me. I didn't cold cap last time as I hate being cold. I lost it all and it's never really recovered - it's grown back really thin, like dolly hair and I keep it short as there's so little of it. It will be winter at least so a wooly hat won't look out of place. The hospital for the oncology appointments is about 15 minutes but the one for chemo and the PET scanner is about 45 minutes but I have to allow extra time in case of traffic. I have an adult DD who is a great support to me.

I'm pleased you could buy some lidocaine patches. Could your GP prescribe stronger ones for you? Pain is awful and totally consuming. It is never ending, I feel like all this is a bad dream that doesn't stop.

I am really hoping your cardiologist approves you to go back on the chemo tomorrow, I'd be desperate to get back on it too. I shall say a little prayer for you tonight and hope that helps. You're right about being in control, I think being on treatment makes us feel we are at least doing something about it X.

@Fantasea Thankyou for saying a little prayer for me, it is much appreciated 😊

I know, it does all seem like a bad dream that won’t go away. Somehow we must get through this, one step at a time .

Im glad you have your adult DD for support, that is reassuring to know.

I will certainly see if the lidocaine patches come in a higher strength at least x

@Enigma54 @Fantasea Sending more prayers your way. Saw my oncologist today. Nothing new to report aside from fairly elevated calcium level (what does tha mean in the big picture)? My heart goes out to you both. @Ventress are you doing ok?

@Sbmpp prayers gratefully received ❤️ Or any words of positivity right now!
When will you be able to have chemo now? ( or have you had it??) Thinking of you ( and everyone else on this thread).

@Enigma54 No chemo this week, next week instead if platelets come up. Oncologist mentioned bone marrow suppression. Are your doctors hopefully going to increase your pain meds? I’m not familiar with lidocaine patches. I do use fentanyl patches which I’m eternally grateful for. They were originally prescribed for chronic back pain (karate class:). I’m hoping relief comes sooner rather than later for everyone in pain.

@Enigma54 oh you're welcome and I hope it did the trick and your cardiologist has agreed to you going back on the chemo, what a terrible few months of worry you've had. I am thinking of you for your appointment and hope it went as you hoped it would X.

@Sbmpp thank you for your prayers. My calcium went up when I was on chemo before but I didn't find out the significance of it. I'm really hoping your platelets improve and you can get back on the chemo next week X.

Another blow! Cardiologist says I have to come off my chemo and oncology will have to find another drug to give me. Except drugs are in short supply for leiomysarcona; there aren’t a huge number of treatments available. I’m back at The Christie next week. God give me strength! ☹️🙈

@Enigma54 I'm really so sorry to hear this, you poor thing, just when you were hoping to go back onto the chemo. You must feel so defeated and fed up. I'm really hoping the oncologist can find something suitable for you xxx.

@Enigma54
Oh no, that's awful. What's the point of protecting your heart if it just means the cancer will get you quicker? Thinking of you.

Indeed, I agree. What IS the point?
It’s such a rubbishy crappy “ journey”

@Enigma54 Agree with you and Ohjoy. What’s the point? It is such a crappy journey. Crappy choices too. Do we, as patients, get to choose?

@Sbmpp I know. It’s so hard. Getting up each day, facing everything, losing my job, my old life, my freedom, my innocence around cancer, blah blah blah. When does it all end? ( well we know the answer to that one!)

Yes to all! Hang tough Enigma54.

When it feels all too much, eat chocolate cake! 🧁🧁 ( well I have to make it yet!)

@Enigma54 What a bloody vicious circle!!! 🤯 I hope your oncology team can put you on a clinical trial if nothing else. It is all so fucking scary. Can you feel any different due to heart damage? Glad to hear you managed to source your pain meds. It is awful that pharmacies can just shrug it off, they should be made into patients regularly and experience it from the other side. See who will shrug then. Bring on that cake!!! 🍰🍰🍰

@Sbmpp All the prayers are gratefully received. Fingers crossed your platelets can recover in time for your chemo next week. 🤞

@Fantasea So sorry to hear it is recurrence of ovarian cancer. Do you know what kind of chemo are you likely to have? My own loo inspection presented itself this morning when I finally looked when wiping (TMI), it was quite orange-y, not sure if tomato & lentil soup I had yesterday had anything to do with it. Dr Google also says it could be related to bile - upon hearing this my heart rate skyrocketed. I mean, the general anxiety over my scan results (due on 30th September) is off the scale. I have awful dreams, including a dream where I turned up for the results only to be told I got the date wrong. I have also been besieged by oral thrush on and off which has made my sense of taste awful. Whiling the time away by reading Malcolm McLaren’s biography.

In general, my brain just can’t get past the fact that I haven’t had a 3rd scan in a row that was good.

To top the general feeling of crappiness off is the fact I somehow managed to lose DS top retainers. I put both top and bottom sets in my zip up jacket pocket during a football match. Once back home I could only find bottom retainers. Which means a trip back to the orthodontist to order a new top set which they will charge me for (we are getting the whole treatment via NHS which at least is something). Again, it threw me sideways and I can’t stop thinking about it. I am trying to put it into perspective, that at least it can be fixed but my scan results cannot.

What did we call our virtual pub, I’ve forgotten! 🙈 Anyway, I’m in there, contemplating, whilst stuffing on peanuts and crisps. I can’t do
” this” for much longer. My brain and body, they are done in. My body hurts, my head hurts, I’ve nothing left of my old life and now that chemo has been swept from under my feet, it feels right to stop fighting. It’s all so consuming and painful. I can’t get my head round how or why this is happening to me. 😢

@Enigma54 Don’t give up! Please, where there’s life there has to be hope. I think everyone here are warriors and you all give me hope.

@Enigma54 Pass on some pork scratchings and a pint (screw you, liver). 💐💐💐 Your appointment with the oncology team next week may throw something up, however unlikely you may think this is at the moment. But I agree, it is 💩 beyond any belief, the constant “fights” and pain and crappiness and knowing that it is not for a cure but just “more time”. It really gets to me. I am reluctant to go to the dentist for a check up because I think what’s the point in paying £100 just so that I can have my teeth when I am going to be in “that place” not that long after.
I have no idea what to do if my scan is not good as I am on my last chance NHS saloon. 😭

@balkanscot the pork scratching are all yours. I say it’s never too early for a pint ( or 5!) 🍺🍻 I am willing your scan results on the 30th to be good!! I too hate the way we have to “ live” 3 months at a time; it’s just so so bloody unfair!

The “no cure” is just crushing to the soul, yet we’re meant to be upbeat and positive! Mmmmm… I think not! ☹️
( but I do try!)!

Hang onto those retainers when you get them!

Your scan results WILL be good!

@Sbmpp I try to follow the life and hope mantra. However, once the pain hits, that’s me, finished. I also think the heart and chemo business has added to finishing me off! Sigh 😮‍💨

@balkanscot I expect to find out which chemo I need at my oncology appointment this Wednesday. I'm really sorry about your looxiety, lentils and tomatoes always do that to me and I'm avoiding them at the moment for that reason. I can understand your anxiety over your scan results and the bad dreams. I totally get you fearing this one particularly, I would be the same. I am also willing your scan results to be good. I had oral thrush on my maintenance and it was so sore, do you have anything for it? The chemo unit gave me some drops which cleared it up.

What a pain about your DS's retainer, it's just another thing to have to sort when you're tired and frightened. I have lost all sense of perspective at the moment - I'm having to change to a new internet provider on Tuesday and I am so worried I'll be cut off and without internet, I'm worrying about that in between everything else.

@Enigma54 I think 'The Chemo Arms' was the one we were thinking of? I'll have a gin and tonic with salt and vinegar crisps. I'm really sorry you feel so defeated, hardly any wonder when you're in constant pain and have all this going on with your chemo and heart issues. I think the being 'positive' is really to make others feel better. I lost a good friend last time around, her insistence that I wasn't positive enough and was somehow hastening my own demise was something which killed off a long friendship and I am still sad about it now, five years later.

Lots of love to everyone xxx.

How is everyone doing?
@balkanscot I’ve EVERYTHING crossed for the 30th, EVERYTHING!! You WILL get to live! 💐🌺🌷🌹

@Fantasea I hope you enjoyed your G&T and crisps. I will be popping into Chemo Arms later to chill. I feel lousy, in pain, nauseous and just “ meh”. If anyone wants to join me, I will be sitting at the back, nursing a brandy & honey, along with a bag of crisps and nuts 🥜. I too have lost friends along the way; including my oldest school friend of 45 years. She just doesn’t have the emotional capacity to deal with me and I’m too old and far gone in cancer hell, to smooth things over, so we are done!

Ironically, it is the lady who helps with our garden, who is ace at “ getting it” She spares me 10/15 mins each time she comes round, to just rant away without judgement. I don’t really know her, but what a ⭐ she is!

Think I might be 🤮 so will say bye for now x