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Cancer Support Thread 95 - No googling allowed 😊

978 replies

LemonDrizzle10 · 16/08/2024 13:56

New thread - we need to stick together!

OP posts:
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winetimenow · 08/11/2024 19:20

Hmmm looks like there is lots to think about either the implant vs diep for recovery

Nomorebear · 08/11/2024 19:32

@winetimenow i had smx and immediate diep. I spent 3 nights in hospital. Didn’t go home with any drains. But I did very little for the first week at home and couldn’t stand properly upright until about 3 weeks post op.

Penguinsa · 08/11/2024 20:33

The surgical drains it varies a bit by surgeon and also its when there's not much fluid in them you can get them taken out. They drain fluid which is blood stained from the breast and the abdomen if you have DIEP, and have long thin tubes coming from you to them, about half a metre long. I had 4 after DIEP and only got to level could take last 2 out on day 7. When I just had mastectomy and then just lymph node clearance I had no drains at either but this varies by surgeon. I did have to go in once to be drained after mastectomy but not after DIEP. At my hospital with DIEP they say to allow for 7 nights in but it can be anything from 3 nights to 7 nights. I could have gone home a night earlier with the drains in but didn't want to as I have a giant Maine Coon cat who would have been using me as a giant cat toy. Also after DIEP at my NHS hospital as they like the room super hot you get your own room and bathroom and I got a view to the air ambulance and the city. The results with DIEP look more natural than an implant and I would go for the same again but it is a bit longer on recovery. My hospital are very strict and its 12 weeks of nothing but walking allowed. Its worth checking with your hospital. I have had no complications and once a week checks.

Definitely get as much done as possible like a cleaner pre operation and might be good to get Christmas sorted before operation if its pre Christmas. Its definitely something can work around but it was quite dull at first until I booked in gardens, fireworks etc. Energy wise I have normal levels at 7 weeks though most people don't return to work until 12 weeks. I am back in on Monday and hoping to negotiate more things pre 12 weeks. I am starting a new job at 10 weeks so will be doing more but they have OK'd that.

There's a Diep Reconstruction UK Facebook group with about 4,000 members with lots of experience of different hospitals though it can get a bit overwhelming pre operation.

tothelefttotheleft · 08/11/2024 22:40

@Mintymood

Absolutely it's fine to message me x

tothelefttotheleft · 08/11/2024 22:43

@Mintymood yes provided by the nhs but had no info from them. My daughter researched it all for me and made sure the cap was on properly each time. I had no hair loss.

BatshitCrazyWoman · 09/11/2024 06:14

There's lots of info about cold capping on the Paxman Scalp Cooling site and Facebook page. The nurses on my chemo unit are very experienced about fitting it and so on, but there's lots of info out there to help.

It's the morning after my first pax and I feel fine. Mind you I used to feel fine after the evil Red Devil (the 'E' in EC) then gradually feel worse and worse. But fingers crossed. Had Phesgo injection yesterday and came home with loads more meds from the lovely pharmacist for all the side effects I 'might' get - Naproxen (can't take this it makes me so sick!), Buscopan and Loperimide. Fun. Hopefully I will need none of it. I take Omeprazole daily otherwise I can't eat, but don't really want a cocktail of other drugs on top of the chemo!

For my sore mouth I was given Corsodyl, which I wasn't expecting - is this what other people have been given? When I spoke to the nurse on Monday, she said I'd get something for the ulcers, too. Hmmm. Will call again if I get them back. Corsodyl stains your teeth, and I need no more appearance-wrecking stuff in my life.

I've lost another kilo, and have been talked to seriously by the dietitian, but I don't have an appetite 🤷‍♀️

LemonDrizzle10 · 09/11/2024 17:51

@BatshitCrazyWoman the standard corsodyl stains your teeth, my dentist said you need to get the ‘Corsodyl Daily’. I used Listerine zero alcohol - I rinsed my mouth really frequently when I got mouth ulcers and it sorted them out. My dentist gave me a prescription for the high fluoride toothpaste too.

OP posts:
dancingwhilstfacingthemusic · 09/11/2024 18:18

@BatshitCrazyWoman i was given benzydamine hydrochloride which has really helped. Also given gelclair, which coats the mouth and helps with comfort. I’ve not looked up side effects - must do as I don’t fancy any risk of discolouring or weakening.

BatshitCrazyWoman · 09/11/2024 19:02

dancingwhilstfacingthemusic · 09/11/2024 18:18

@BatshitCrazyWoman i was given benzydamine hydrochloride which has really helped. Also given gelclair, which coats the mouth and helps with comfort. I’ve not looked up side effects - must do as I don’t fancy any risk of discolouring or weakening.

That's what the nurse I spoke to on Monday said I would get. Corsodyl (the one I've been given) has alcohol in it, so it's ... not great ... with a sore mouth 😬 I have some alcohol free mouthwash already, but it does nothing for the soreness.

Somehow the prescription didn't get through, as the pharmacist just gave me the Corsodyl with no label on it. Never mind. Will get it sorted. Still feeling okay 🤞which is an improvement on my post-EC experience. Maybe I'll get out for breakfast tomorrow!

Mintymood · 09/11/2024 19:20

Thank you so much @BatshitCrazyWoman and wishing you well on your upcoming treatments 💪🏻 I'm seeing oncologist Monday so hoping to get a plan in place. At least I'll feel like something is happening!

@tothelefttotheleft much appreciated thank you will do. Amazing that you managed no hair loss with the cold capping.

dancingwhilstfacingthemusic · 09/11/2024 19:42

Can any of you share experiences / thoughts on neuropathy? I’m only 3 paclitaxel in and feel like my ring finger nail has been shut in a drawer. I’ve ordered some cool mitts as I see that Christie’s are using cooling to the hands and feet.

@BatshitCrazyWoman glad you’re still feeling ok.

BatshitCrazyWoman · 10/11/2024 09:30

I hope you get some answers about this, @dancingwhilstfacingthemusic . I'm not looking forward to that as a side effect 😕

Still feeling okay (although haven't slept well) and am out for breakfast 2 days after chemo, which is a result! Quick trip to Waitrose afterwards, too. A proper 'day out' 😂

londondragonite · 10/11/2024 10:10

dancingwhilstfacingthemusic · 09/11/2024 19:42

Can any of you share experiences / thoughts on neuropathy? I’m only 3 paclitaxel in and feel like my ring finger nail has been shut in a drawer. I’ve ordered some cool mitts as I see that Christie’s are using cooling to the hands and feet.

@BatshitCrazyWoman glad you’re still feeling ok.

I'm not totally sure whether the nail damage (which is also common) is the same as neuropathy.

It would definitely be worth asking your BCN!

I have used ice gloves and ice socks throughout and have no peripheral neuropathy but I do have a few sore nails which I kind of thought was more from damage to the nail bed. My best friend was on Paclitaxel a few years ago and several of her nails fell out afterwards.

Is it just the nail, or do you have any numbness of tingling on the skin of the finger as well?

dancingwhilstfacingthemusic · 10/11/2024 10:31

Thanks, @londondragonite it feels like the aftermath of slamming a finger in the door, centred on the nail of my ring finger but with the pressure sensation down to the top joint. I can feel similar on the tops of the ring and little finger either side.

Glad to hear no neuropathy for you. It feels horribly early having only had 3/16 cycles. I’ve been using polybalm since the week before my first chemo.

I have a pair of cool mitts on order but am waiting on the right size of a suzzi hands/ feet kit to come into stock for the socks. I’ll get something else if they don’t reappear on the website this week.

Penguinsa · 10/11/2024 12:22

When I did Pax I used things like ice, frozen peas and ice lollies with an ice box, ones you get from camping type shops and the chemo gloves and socks, just searching on Amazon saying that. Always say to your team quickly if you get neuropathy or any symptoms so they can adjust things, neuropathy can be permanent if not controlled properly but if team know should be able to minimise risk of that. 2 years out mine is minimal, I have slight tingling in ends of fingers, part of face and numbness around wrists but nothing that interferes with anything.

The ice lollies meant no mouth issues at all, and taste normal, well worth also seeing a dentist pre chemo, which may well need to be private given the state of NHS dentistry and they can prescribe high fluoride toothpaste and things to help if get any mouth issues. Probably still worth doing in chemo if not done already but ideal time is to go before, also get any fillings or work done, chemo and radiotherapy can be both rough on teeth as is Tamoxifen and I have had all 3 but teeth have been fine. Very important mouth doesn't get too dry my dentist said, I never had issues but dentist can prescribe something if do, think it's something like saliva replacement, sounded lovely.

Not sure if nails will be neuropathy or something else but say to team, I do think the ice or similar, there's frozen gel packs you can get from Amazon would help future damage. Basically the cold reduces chemo to that area I think. Some people use nail varnish but I didn't and nails are perfect and it seemed to split opinion if it helped.

I also found generally drinking a lot pre chemo day on the day and eating a bit before helped and with eating generally little and often was easier for me than meals and I tried to get iron rich foods though it will vary by person.

ememem84 · 10/11/2024 13:06

Quick question.

we’re hoping to go on a trip after chemo has finished. But my usual travel insurance with my bank won’t cover me. They’ve said I need specialist insurance. Anyone else got this? And who did you go with?

londondragonite · 10/11/2024 13:16

dancingwhilstfacingthemusic · 10/11/2024 10:31

Thanks, @londondragonite it feels like the aftermath of slamming a finger in the door, centred on the nail of my ring finger but with the pressure sensation down to the top joint. I can feel similar on the tops of the ring and little finger either side.

Glad to hear no neuropathy for you. It feels horribly early having only had 3/16 cycles. I’ve been using polybalm since the week before my first chemo.

I have a pair of cool mitts on order but am waiting on the right size of a suzzi hands/ feet kit to come into stock for the socks. I’ll get something else if they don’t reappear on the website this week.

I would say it doesn't matter too much if they are the right size (Suzzipads) as long as you can get your hands and feet in, eg large rather than medium would be fine.

Sorry to hear your fingers are so sore, that doesn't sound nice. I have had slightly sore toe nails on my big toes but not the whole toe if that makes sense it is definitely just the nail.

Penguinsa · 10/11/2024 15:19

For insurance I have used Insurancewith which is specialist though after chemotherapy the holiday I went on initially was in UK so didn't bother with insurance. Chemo effects I was told can go on for 3 months after chemo so I was advised to book an easy holiday.

ememem84 · 10/11/2024 16:53

Penguinsa · 10/11/2024 15:19

For insurance I have used Insurancewith which is specialist though after chemotherapy the holiday I went on initially was in UK so didn't bother with insurance. Chemo effects I was told can go on for 3 months after chemo so I was advised to book an easy holiday.

Thanks! I’ll check them out!

oh it’ll be an easy holiday for sure. A week in Tenerife all inclusive. I plan on making my way to the pool and then sitting whilst the kids play.

Littlecaf · 10/11/2024 18:32

I have PN in my hands and feet, although it’s fades towards the end of each cycle then back again the day after chemo. I’m on TCHP. I’m cold capping and didn’t know about freezing hands and feet until I read about it on the Paxman Facebook group. I’ve now ordered compression socks and gloves for my last round - the oncologist reduced my carboplatin dose to 80% as that causes more PN than docetaxel apparently. I’m hoping it’ll fade completely afterwards. It’s annoying but not too painful. Not sure I could do cold cap AND cold hands and feet. Brrrrr!

On another note, just bumped into an ex boyfriend of many many (20!) years ago (split on good mutual terms after 6 months so was never serious) - had a friendly chat in Sainsbury’s meat aisle for 10 mins - he asked me how I was and I just blabbed about work and the kids and totally forgot that I have cancer! Anyone else done this? - I just had an automatic response that “yeah I’m good kids are loving school, we’ve just had the patio done, looking forward to Christmas….” Etc! Was rather refreshing. One day I hopefully will be able to truthfully say “I’m good thanks!”

EachandEveryone · 10/11/2024 20:01

I was quoted £850 for six days in Tenerife for January I just don’t think I can justify that insurance

dancingwhilstfacingthemusic · 10/11/2024 20:47

Sorry to hear of that quote @EachandEveryone - can you remind me where you’ll be with treatment at that point?

I’ll have an insurance issue if I’m well enough to go on ds’ 25th birthday celebrations in Paris as I won’t quite have finished chemo, even in the unlikely event I get no holdups.

Is anyone aware of how inflated insurance is once treatment is over? Eg once chemo has finished and whether costs go down after a certain amount of time?

EachandEveryone · 10/11/2024 23:04

It will be the end of 12 rounds of chemo where they are giving me a break before they decide what the third line will be ☹️

dancingwhilstfacingthemusic · 10/11/2024 23:28

Just the point where you absolutely deserve a break @EachandEveryone

Penguinsa · 11/11/2024 09:21

Have a lovely time in Tenerife ememem84

I think costs do go down a lot once not in active treatment (Tamoxifen or similar is not counted as active) - I was given an option of 3 policies for a weeks cover on a global location (2.5 years since active treatment ended now) and I took cheapest one which was roughly £51. I have done some trips uninsured but had husband with me and savings and low risk for things happening out there. There was a lady on here who was stage 4 and paid about £500 for insurance for US 6 week trip and she needed £5000 worth of scans etc out there and they paid it fine (InsuranceWith). I have used InsureandGo pre cancer but when covid happened it didn't pay out despite booked in 2019 for 2020 and had to chase £6k of expenditure myself. Well I could have filled in lots of forms and got about £30 back. I got almost all back eventually directly but took a year. Not sure if there's a certain period after active treatment, would just try online and see what it says.

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