Cancer Support Thread 92 - Christmas Happy Hour at the Patience Inn 7pm tonight 🎄

[LemonDrizzle10]

Old thread nearly full!

@TopOfTheCliff

🤣🤣🤣🤣 what're you going to influence tho?
You know you have to have lip filler to be an influencer? It's the law

DD says lip filler and cleavage and pouting is very 2018. This year is about Frank truths and challenging stereotypes she says. I guess instead of settling down with my knitting like a decent pensioner I will be on my bike extolling “Motion is Lotion”

Yes...

@TopOfTheCliff
@BreakfastClub80

Can I ask when you started to lose your hair on EC?

I've had one round of EC. Used the cold cap but the machine said error while I was using it. I've also just found out I needed to keep the cap on for 90 mins after chemo. Not the 30 mins my nurse said.

Good start @TopOfTheCliff

I'm so sad for her @TwigTheWonderKid , it sounds horrific

Tonight I've discovered that horlicks is VILE 🤮

@tothelefttotheleft I am also cold capping but a lady doing the same chemo as me isn’t and she basically lost it all on day 21, so the day before the second dose. I met her on day 20 and most of it had gone by then. I experienced a big shed on day 21 too but not the same. I have lost a lot of hair though. Currently, I have a thin covering of baby hair (the sort that is growing all the time but you don’t notice it) plus a sort of Mohican of longer hair that hasn’t shed. It’s an odd look, for sure, but my DD thinks it’s working for me 🤨. When is your next session?

@TopOfTheCliff and @Tilllly what the heck? I’ve just started knitting and crocheting since having chemo and have found lots to watch on insta. It’s very soothing when speeded up, like watching paint dry 😉.

@tothelefttotheleft it was around day 18 for me, it started coming out in clumps so I had it sheared.

@Tilllly I disagree. Horlicks is lovely and I miss those tablets you used to get too. At boarding school I was the headteacher’s pet and very pale and skinny. When I had flu she thought I might die so she brought me Horlicks and biscuits at bedtime. I felt very special!

@BreakfastClub80 I am sure watching me on an exercise bike would be even more dull than watching paint dry. I was on BBC1 news doing it though during lockdown in 2021 being interviewed by Hugh Pym as A Cancer Patient whose Diagnosis Was Delayed By Covid. Fun Times! 🙄

@BreakfastClub80

Second round is next Tuesday. Monday will be day 21 for me.

@BreakfastClub80

How long did you spend wearing the cold cap after the chemo?

@TopOfTheCliff

Did you cold cap?

@tothelefttotheleft nope. It wasn’t available during Covid times then I couldn’t be bothered second time. I did use the ice gloves and socks though.

@TopOfTheCliff

Did you buy the ice gloves and socks or were they provided?

I bought them on Amazon. If you PM me your address I can post them to you as I hope never to need them again!

What're ice gloves and socks for?

I've just had the cathartic experience of filling in a questionnaire about my stay in the emergency hospital after my spine first collapsed. I think I rejoined this thread a few days after that experience, when I found the referral to the consultant orthopaedic surgeon hadn't been made, so I probably won't have shared the gory details here. I won't bore you with it all, but I realise with hindsight that I am quite traumatised by how poorly I was treated and how much I needed to advocate for myself to get the scans I needed and was originally promised, even though I couldn't walk, sit or stand, and was in huge amounts of pain.

It felt good to get it all out on an online form, even though I don't believe for a second it will make any difference whatsoever.

I hope someone learns from it @SewingBees

I've found my MP incredible in holding the NHS to account. She's not been arsey, just asked why X has happened / not happened and how it can be better. And I've seen some small changes because of it.

Im sure that water in my abdo is getting bigger. Im waking up with hiccups as well could that be related?

@tothelefttotheleft with EC, I had the cap on for 90 mins post chemo. With paclitaxol, it’s down to an hour but the chemo takes longer so still the same in total. Ie 30 mins before, chemo (0.5/1 hr) and after (90/60mins). You might be ok, EC is definitely worse for the hair and it has started growing back during taxol, whether using the cold cap or not.

I’ve just started using the cold gloves to try and prevent my neuropathy getting worse. I’m not finding them easy @TopOfTheCliff. Couldn’t bear to try the socks last week. DH had to keep turning the page on my kindle for an hour 🤣as they’re so massive!

@Tilllly hope the gamma knife experience is ok today. The cold gloves and socks are to try and keep your blood vessels tiny so the chemo doesn’t damage them.

@SewingBees glad that you’ve had a chance to feed back your experiences. Sometimes we don’t realise how traumatising different procedures are until a while afterwards. I can’t quite remember your diagnosis but think it was spinal? My BIL had a chordoma removed from his neck in 2020, he’s in Australia but I remember it was rare and surgery was tough. I hope you’re feeling better daily now.

@EachandEveryone do you think the fluid is chemo belly (I’ve had some bloating on and off)?

I am back from gamma knife. It wasn't horrific but wasn't much fun either

They did the MRI beforehand and found another 5 tumours, tiny but still.
So SEVEN of the fuckers overall.

So was in for nearly 2 hours but hopefully they got them all. What bothers me is how 5 new ones appeared as I was on chemo and immuno. This suggests they're going to keep happening?

The brain doctor said cells just dislodge from the tumour and land elsewhere, which sounds terrifying, I could have tumours all over???

@Tilllly I just don't know what to say. Cancer is just bad news occasionally interspersed with rays of hope isn't it. At varying times the good outweighs the bad and vice versa. No wonder our emotions are up and down so much.

@BreakfastClub80 The surgery I went through was fine really, and the recovery is going well and I'm planning my return to work for the start of March. The traumatic experience was when I first presented to A&E with severe back pain and leg numbness and an MRI identified the bone mets. No trolleys and I couldn't sit stand or walk, so ended up lying on various corridor floors at different times. I collapsed onto the floor of the triage room because they did not have a bed in there, of all places! But the most traumatic bit was the radiology registrar deciding I didn't need an in patient CT scan to see if the cancer was anywhere else, and should be discharged. I had to really fight my corner on that one, despite being completely immobile and in horrific pain. To add insult to injury they then failed to send on my referral to the orthopaedic surgeon.

At the time I was too busy looking forward to really dwell on it but now looking back I realise that experience scarred me deeply. I just felt sidelined, ignored, like I was being too demanding, that I wasn't worthy of anyone's time or effort. I'm glad to report that more recent experiences have been far far better.

@TopOfTheCliff

I have messaged you. Thankyou.

@BreakfastClub80

Thankyou for sharing how EC cold capping was for you. I'll try and get them to leave it on for 90 mins this time.

What kind of side effects did you get from EC?

When you have Paclitaxol are you also having Carboplatin? I will be after 3 months of EC.

@BreakfastClub80 that was a drawback of the gloves. I couldn’t read or do puzzles I had to watch crap TV or chat to my neighbours.

@tothelefttotheleft I got your PM and will post you a parcel. You won’t need them till you start the paclitaxel.

@Tilllly well done getting through a tough day! You rock

Just quickly popping in to congratulate @Tilllly on zapping her bastard tumors today! Well done for getting through this day. And hopefully the tiny ones they found are now well and truly fried!

@Tilllly what a day! Well done for coping and getting through it, you must be so shocked and p**d off about the MRI. Good that they got at it all with the gamma knife but another roller coaster (as Pp said). If the cells dislodge, then now they’ve been blasted hopefully that’s it? Or can they move anywhere? If so, surely they’ll do a PET scan or something? The uncertainty is crippling sometimes.

@SewingBees thanks for explaining, your experience does sound harrowing. I feel lucky so far that my doctors do seem to think much further ahead than me but A&E isn’t always like that and when you’re in pain and vulnerable it can be terrifying. I once saw a TV programme where they said that everyone becomes a ‘patient’ and it changes you. So even a CEO (for example) will find it hard to express what they need when they’re very ill or in pain. You’re so dependent on them then. I’m so glad it’s been better since.

@tothelefttotheleft i had 4 cycles of EC and each was different, it was a bit weird. The first was my worst but actually I had a really bad headache for a week which was from dropping the steroids to quickly. So I started weaning off and that got rid of that. Second time I was exhausted and got breathless (again first week) so my heart was checked and cleared to carry on. Third and fourth were fairly straightforward, I would get acid reflux rather than nausea and so took omezaprole throughout which worked. I was mainly worried about my hair 🙄!
I’m just having paclitaxol now, I don’t have carboplatin so not sure what that’s like. For me, the taxol is ok, I just struggle to sleep and now have a bit of peripheral neuropathy in my hands.
It’s a long haul but you will get there, have you had surgery yet? I’ve got that next so another hill to climb.