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Original poster

Cancer support thread 91 - don’t borrow tomorrow’s worries

991 replies

LemonDrizzle10 · 27/10/2023 07:39

New thread

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22
Tilllly · 03/12/2023 15:56

@DilemmaDelilah
Have your breast cancer nurses not been able to offer any advice?
I'm not sure I had dermatitis, but I had some sort of problem with my skin with radiation after breast cancer, the Aveeno green top was a bit of a game changer for me. It was very soothing and moisturised it and seem to help it heal.

Tilllly · 03/12/2023 16:01

I have just been discharged from hospital after getting a temperature in the night

I, rather stupidly I now know, decided to wait and see if it would come down, it didn't it went up

I can't believe how poorly I felt and how fast

I rang the 24 hour Helpline, who weren't really much use, just told me to go to the ED

They did the blood test very quickly for neutropenia, but I'm fine for that, but the doctor said I dodged a bullet for sepsis

Apparently when Oncology say go to the ED if your temperature goes above 37.5, they don't mean hang around because you think you know better and you've just got a cold...

They had me in a pressure positive room and on some IVs and have let me come home with some more antibiotics on the grounds that I am sensible. Allegedly

Temperature check every two hours, straight back in if it hits 37.5

Lesson learned
Apparently, I don't know better than the oncologist 🤣

Silkiefloof · 03/12/2023 16:44

Glad you are home at least Tillly Yes ours said 38C and above during chemo phone chemo line immediately even at 2am. They said the people they get very seriously ill are the ones who think I won't bother anyone until morning. Though I was only told that as I asked.

Octopus45 · 03/12/2023 17:14

Sorry to hear about your hospital stay @Tilllly. Fingers crossed your temperature doesn't go up again.

@DilemmaDelilah sorry to hear you're struggling. Hope that they can give you some decent advice that will help.

@KentishMama take care, drink lots of orange juice. Hope that you feel better and that you're still able to have your surgery as planned.

DilemmaDelilah · 03/12/2023 21:23

@Tilllly I was advised to use only E45 and to stop using that if my skin broke down, which it has. Once it heals properly - whenever that might be - then I can start to moisturize again.

I'm sorry to hear you have been unwell. I think sometimes we forget just how vulnerable we are to infections and we need to be just a bit more careful of ourselves.

nappybrained · 03/12/2023 22:33

Love this. It's like ours!

nappybrained · 03/12/2023 22:40

@Tilllly sorry re hospital visit. I have a fever with each chemo which they think was due to the GCSF injections so they had to reduce the last one ... And I didn't need injections but heading into next lot of chemo will... So not looking forward too potentially feeling so rough with fever... And being in and out of hospital but so grateful for all the fab care I have had

Tilllly · 04/12/2023 08:00

Man I'm grumpy

How long will I feel sick for? I hate it

#havingapaddy

KentishMama · 04/12/2023 08:38

@Tilllly If you ask @TopOfTheCliff nicely, she might open the virtual rage room for you.

Steroids gave me the rage, by the way. You're not on Dexamethasone by any chance?

Silkiefloof · 04/12/2023 08:41

I would give your chemo line another call Tillly to see if they can do anything or want more checks. I had ondasetron and never felt that sick. Check your temp if you haven't already. They did tell me though if you don't take the anti sickness before you feel sick it's much harder. Hope you feel better soon.

Tilllly · 04/12/2023 09:00

@Silkiefloof I was given the cyclizine anti-sickness tablets, and it just says take if needed, so I didn't take them until I actually was feeling sick
I had the chemo and immuno on the Wednesday and the sickness kicked in during the night Friday night to Saturday

@KentishMama yes I'm on those, but I only had them for three days. The day before the chemo, the day of the chemo and the day after. So I had the last dose on Thursday, then over Friday, started to go a bit rubbish and by Saturday felt grim.

TopOfTheCliff · 04/12/2023 10:31

@Tilllly there are loads more options if you ask. I had Aprepitain (sp?) before during and after the IV chemo, and ondansetron for three days. I never felt sick at all but had domperidone if I needed it. The first one is very expensive but effective. Not all centres use it because of cost but you are worth it! Only side effects were constipation I think, although hard to ascribe blame to one thing.
Rage Room open all week, with extra Christmas baubles to smash.

I’m Oop North in a Holiday Inn. I knocked over my coffee at breakfast and had a lovely chat with the waitress about slippery fingers after chemo. She was a 13 year BC survivor so we bonded. If you know you know!
DH has gone cycling in the sleet (!) so I shall go for a short session in the fitness centre before checkout. Later we move to York for some Christmas cheesiness.
Sending patience and strength to those who need it.
Top x

Tilllly · 04/12/2023 10:40

Thank you everyone
Am feeling unexpectedly low and mangy, have been a brave soldier till now
Getting out of bed would probably help

Top, have a lovely time in God's own county :D
I like York. If you get chance, go to the treasurers house next to Yorkminster, it's all nicely done up for Christmas and the café is charming.

I avoid the shambles though, it's just really really busy

HauntedDishcloth · 04/12/2023 10:49

@Tilly I had the most awful nausea & vomiting with chemo to the extent that my oncologist even tried sedatives, which I threw up! In the end what worked for me was a travel sickness patch called Scopaderm which I put on before the chemo & left on for about 5 days. It was prescribed for me but can be bought over the counter too I believe. I don't get travel sickness usually so don't know what that's about. Might be worth adding into the mix for your next session.

TopOfTheCliff · 04/12/2023 12:32

@HauntedDishcloth I use the patches when sailing. They are great apart from they make you a bit chatty as they contain scopolamine which was used as a truth drug by the CIA!

SewingBees · 04/12/2023 12:56

@Tilllly you're definitely allowed to feel sorry for yourself. Are you being looked after by anyone?

Tilllly · 04/12/2023 13:00

Thanks Haunted
I think I will ring the nurses and see if there's anything else. I daren't try getting something over the counter because I'm allergic to metoclopramide.

I'm on the sofa in my nighty watching Doctor Who, I'm going to give myself today to feel crap and miserable

Tilllly · 04/12/2023 13:02

@SewingBees
No, I'm all on my lonesome but to be fair that's my choice.
DH could have worked from home, but he's getting on my nerves. He's doing really annoying things, you know, like asking me if there's anything I need. Making suggestions of things he thinks might help. Trying to cheer me up. You know really irritating things like that.🤣

TopOfTheCliff · 04/12/2023 13:12

My DH has just started talking about how he felt watching me go through chemotherapy. I hadn’t realised how hard he found it feeling helpless while I suffered. He is a lovely cheerful man but it got to him. He’s blossoming again now I’m recovering. It’s hard for empaths living with a poorly partner. The answer here was to send him out for a long bike ride with his mates.

KentishMama · 04/12/2023 13:38

@Tilllly How dare DH irritate you with unnecessary helpfulness! Mine was similar, and I got quite annoyed with the constant "how are you feeling" check-ins. However, my mum decided to come and stay during my third chemo cycle and I quickly realised that DH was nothing compared to my mum!

I guess I have that to look forward to for next week. If this surgery goes ahead. I'm waiting for a phone call to confirm that they have a bed for me. And a watched phone never rings!

SummerCycling · 04/12/2023 16:02

Hello everyone x My very best wishes to all.

@Tilllly

Like @TopOfTheCliff I was also on Aprepitant. A tablet an hour before the chemo infusion, then one on day 2 and again on day 3.

Also on days 1-4 I had Ondansetron twice a day and Domperidone 3 times a day.

I didn't get any nausea at all, although my stomach is one of the few parts of my body that is very robust generally, so might not be a general indication as to how effective that regime is for others.

That was while on Epirubicin and Cyclophosphamide.

When I switched to Paclitaxel and Abraxane, I didn't need anything. For some reason they gave me Metoclopramide as a pre-med and three packs of the stuff which I didn't even open so I refused to take them home after the first infusion of those chemos.

@lucysmam

When you mentioned the bus routes to hospital I thought I'd let you know my experience of hospital patient transport. It was free and worked very well; I used it sometimes during my weeks of radiotherapy.

AFAIK all NHS hospitals provide it to eligible patients and you should be eligible as a chemo / recent chemo patient. The only limitation is that it seems to stop early, so your appointment would have to be over before 4pm if it's like the hospital I was at.

They collect you from your home and take you back afterwards.

Tilllly · 04/12/2023 16:05

They are giving me some ondansetron to take a alongside the cyclizine

SummerCycling · 04/12/2023 16:06

Just realised, I should have added I was also on 8mg Dexamethesone on days 1-4 when on Epribicin and Cyclophosphamide.

SummerCycling · 04/12/2023 16:07

@Tilllly I hope the Ondansetron helps. An A&E consultant told me it's the one they prefer.

Silkiefloof · 04/12/2023 16:14

That's good you've got ondasetron. Its really strong. I have a sickness phobia but after taking the 7 ondansetron they gave me to take with first weekly Pax I quickly shifted to just one at the chemo and one a day after then only more if needed. Obviously you need to find what works for you but I definitely had no fear of being sick after one of those. They strongly recommended one just before or at chemo.