Cancer Support Thread 84 - gently crunching our way into autumn

[mowly77]

New thread as old one about to be full. As those who have been around far longer than me have said: Welcome. Pull up a chair, help yourself to a biscuit, a large gin, or a detox tea. Or all three. This is a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc., vent, scream, or discuss life in general.

Please feel free to join for support if you are going through tests as well, hopefully they will come back all clear, but if not we are here to hold your hand through the journey.

@ShuttersThatShut and @SierraSapphire thank you for the support and advice.

@fudgecat they advised me to have a picc line but there’s no time to have anything before Wednesday so that’ll be a catheter. I’m going to ask about a port now I’ve seen Shutters’ advice. If I can get my words out that is 😢 I hope all goes well for you.

Yesterday was nightmare. I couldn’t go to Marsden in person as my partner, whose turn it was to get up to take daughter to school, thought she was too sick to go (I would have sent her personally, it was borderline cold), and yep, sure enough, didn’t affect him anyway, as he went off to college at 9. I was supposed to be at the Marsden at 2.30.

I couldn’t take her, obviously & we have no family for last minute child care. They kindly arranged to make it a phone appointment. It was 9 minutes long. They said they can’t take me on as a patient. Can’t remember much else as everything I was going to ask was null and void from that point really.

I'm sorry @mowly77 That must be very disappointing for you. Have you any idea why they couldn't take you? I'm sorry, sending you strength and positivity x

That sounds crap all round @mowly77 - do you have another option for a better hospital? Can you contact PALS or appeal or anything? I got a second opinion from the Royal Marsden by paying for it, but the admin was a bit chaotic. I think they're really overstretched, not that that helps you.

Gosh - I can't keep up with the thread. Such a lot of tough news and worry - sending positive thoughts to everyone.

@mowly77 - that must be really hard (and worse because of not being able to have the conversation in person). I don't know how second opinions/referrals work, but are there any other options? I'm really sorry you've had yet another knockback - I remember you posting about all the shit with the prescription etc.

@WorryMcGee . I have my second EC chemo tomorrow. I did feel rough for a few days after the first round and slept a lot (my kids are teenagers, so easy for me to say, I know). And I got mouth ulcers and horrible constipation. But it wasn't the worst I've ever felt - I definitely felt poorlier with Covid, for example. And for the last 10 days or so I've felt pretty much completely normal. Plenty of energy - able to work, go out, exercise, etc. I felt pretty low to start with as I didn't see any light at the end of the tunnel. But I feel a bit better this time round, knowing that there will be patches of light here and there. Wishing you all the best.

@dotty2 this has really, really helped. Thank you ❤️

Good luck tomorrow @WorryMcGee you are on the same regime as me of dose dense fortnightly EC and P. It’s a compliment to your fitness and strength that they have decided you can cope with it. It goes quickly as you don't have much time to recover between rounds but you get through it and back to your life sooner. I have worked out now that I don’t have to be brave. It’s okay to be scared and tearful as long as you do turn up for treatment. In a way I found reducing my expectations of myself helped. I’m a big wimp and hate needles but I haven’t missed a dose. I’m feeling okay after round 6 now.

I have been visiting DM88 this week. She drove me to the garden centre to buy seeds for her gardener to plant and bought me tea and cake. She is awesome!
My new goal is to live to 88 and have a gardener!
Sending love to all having scans, waiting for plans, or enduring treatment.
Top

@mowly77 , that sounds like really disappointing news. Did they say what you can do from here? Make any suggestions or just say goodbye. It sounds like terrible patient care, I am so sorry you are dealing with this.

@TopOfTheCliff , I’m interested in what you say about that chemo schedule, it’s the one I had and I consider myself old, fat and fairly unfit! However I did cope with it quite well and feel much better now (after 15 radios as well) so I think I should be grateful for my body which must be stronger than I thought!
Have my second bone infusion today, at 8.30 am, not quite sure how I felt after first one as I received news of my dads death as I was having it, so everything a bit of a blur there!
Annoyingly ( but nothing in the scheme of things) I have that at 8.30 and a neurological appointment at 2.30 at same hospital, so today will simply be going back and forward to hospital. Luckily hospital is walkable and there is a great bus service so again, I am pretty lucky.

Love and light to everyone, particularly those who are going through bleak times.

@mowly77 I mean did the hospital just say goodbye, not that they suggested that’s what you should do , so sorry I really misspoke there, early morning brain.❤️❤️

Mowly that’s rubbish news about the hospital, how disappointing for you. I hope they at least explained why!

Last chemo for me tomorrow. My CA125 is even higher yet again so it’s really popped my last chemo high. I’m full of gloom again. It’s way higher than when I was originally diagnosed now, but how can that be when I’ve been on chemo and had a clear PET only 2 months ago (when it was already higher than at diagnosis). So worrying and frustrating.

Oh @Podgedodge I am sorry to hear about your dad. When I read your post first I thought he died yesterday but now I realise it was 6 months ago. We lost my DF 18 months ago and although DM is amazing she still cries every night. My best Zometa was the one they sneaked through with chemo.
@AGreatUsername those markers are more trouble than help. They just seem to bring terror to people without symptoms. Sending love and hoping for positive news for you and @thereisonlyoneofme who I am thinking of a lot at the moment.
@mowly77 I am so sorry to hear your news. Will there be a letter you can make sense of from the Marsden? It all sucks really. Who are your allies? Have you got a BCN to talk to? Our unit has a really lovely one for secondary BC . Or maybe Macmillan could help? Again sending love and hope and holding you in my thoughts.
@Podgedodge this is all bloody hard work but we must be grateful we tough old ladies are doing okay considering everything!
DM wants me to take her to Eye Clinic and Covid jab on day 4 after next chemo. Question is can I drive 150 miles that day? Usually I just lie around watching Pointless… But it will make time pass and I like driving so why not?
I’ve just been invited to a Xmas lunch the day after last chemo too. I’m just going to say yes after everything I’ve turned down. I shall get a new hat for the occasion
Love to all
Top

@TopOfTheCliff I took my DDs to a big fair 4 days after my last chemo. We stayed overnight in a wee hotel, and I have no idea what they would have made if the bin with gabapentin wrappers plus my injection paraphernalia from filograstim(? Luckily brain has blotted it ou) and inumerable tissues from my happy tears at actually having walked a mile and a half along the fair front, gone on a slow big wheel and still be standing at the end of it!Had a fish supper too, but that tasted horrible,cos of tastebuds.
It was so lovely to do something life affirming. So the Xmas lunch I might think yes to…the 150 mile drive…hmmm. That might be a challenge.But then again you are Top, so …🙂🙂🙂🙂

Top thanks for thinking of me ! I am pretty sure Im having a recurrence. Had a CT scan yesterday but no results for 2 weeks.
I am in total awe for those of you that are going through so much to keep going. Im not so brave as you all

@thereisonlyoneofme, I think of you as well when I’m going about my day and I’m sad that you may be having a recurrence.

I have received an appointment letter for 6th December. Its with medical oncology outpatients? I still have no clue what Im looking at. I want to be pleased I will have a plan but Im bloody dreading what they have found. It doesnt mention in the letter about bringing someone. I thought it would do.

From involvement with the hospital with my mum (not cancer) things seem to have gone back to it being okay for anyone to accompany anyone. I always try to take someone regardless @EachandEveryone - seems a while to wait to get your results though, seems they want to do chemo (or radio - do medical oncologists manage that?) before any surgery I'm guessing. Tough on you still not knowing .

@mowly77 I'm really sorry to hear that the Marsden aren't prepared to take you as a patient, so hard for you when you've been holding out for that. Sending love.

@thereisonlyoneofme I'm so sorry to hear that you are fearing a recurrence. I hope the next two weeks passes quickly for you, the waiting is the worst.

@AGreatUsername What an awful worry for you, when do you have your next appointment with your oncologist? I've read that some ladies elect to not be told their CA125 but for me, I think I would worry even more. Hope you get some reassurance soon.

@Fantasea I had my call with them yesterday for those blood results. I will have a face to face for the scan results and to consent to the hormone inhibitors I’ll be on then in about 4 weeks. My CA125 is over 500. I am still holding out hope it’s chemo driven as it was dropping nicely before chemo started and google says taxol causes systemic inflammation so surely it could be that? I’ll feel better if (please please) the next CT comes back clear too. I have had some ongoing lower back pain, but I’ve had that after the last few cycles too a few weeks on so I hope it’s that!

@AGreatUsername it sounds as though it really could be chemo driven. I've looked back in my chemo diary which they gave me and my CA125 was 289 the day before my first infusion and 1618 the day before my third which seems like a huge leap. I've had lower back pain since my surgery 18 months ago, it comes and goes and is worse when I've been on my feet a lot. I'm really hoping that your next CT is clear.

@Fantasea that post has helped me so much. The doctor is always like ooh this is very unusual so I assume it’s bad but to know that you experienced the same is really really helpful.

@AGreatUsername so happy that I've been able to help. I think the oncologists go on the typical profiles of patients. Not nearly so worrying but I get a very sore mouth and regular ulcers on Niraparib maintenance which is one of the well-known side-effects. I manage it with mouthwash I get from the GP but even with using this, the ulcers get so much worse when I'm tired and this has been the case for over a year now. I mentioned this to the oncologist in August and he was completely baffled as to why this should be.

I had a side effect on Niraparib that I couldnt stop eating and had hunger pangs all the time.Oncologist couldnt understand it,never heard it before. Reduced dose and it went away ! Have since seen reports from other people who had the same side effect. It seems as if it isnt on the side effect list that coles with the drug it doesnt exist !

@thereisonlyoneofme It's because many doctors don't bother listening to their patients. One of my oncologists is a master of it. I'll say something and he'll tell me that I've never mentioned it before. I can produce dates, and include what his replies were so he usually backs down but not everyone is as bolshy as I am.

The most famous one was when I was about to start chemo and I said I didn't want it at home - he told me I didn't really have a choice. Then after the incident happened and I brought it up - he told me that I'd never said that.
You can imagine how I had to be peeled off the ceiling - and now when he starts up I just remind him of it.
He keeps forgetting that I won't deal with that company at all and setting up video calls for me using their software and nurse in attendance.

@thereisonlyoneofme I had the extreme hunger too, around the same time as you and I think you're a couple of weeks ahead of me with starting on the Niraparib so it's a bit of a coincidence and also, we're a sample size of just two! I would eat a huge meal with pudding and then be stuffing down bowls of cereal just to try and 'fill myself up'. That level of hunger has subsided now but I still have a 'very good' appetite. When I have my chemo review, I always want to laugh when they ask if I need anti-sickness as I could really do with appetite suppressants.

When I had my first carbo/taxol infusion, a few days afterwards I had electric shock feelings in my left nipple and then the following day, the same in my right nipple! I'm certain that's not in the literature..

I had milk coming out of my nipples @Fantasea - after taxol / carboplatin, turns out prolactin secretion is an unwanted effect of the anti-emetic! I have electric shocks in less sensitive places though.