Cancer support thread #82

[MrsPnut]

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh

@MissSmiley thank you for the picc line info; I’ll get on it & get them to make me an appointment to get one in … some of my old pre-menopause clothes fit too! The cancer weight loss finally kicking in. I don’t have anywhere to wear them though except when I go to hospital to cry but hey why not get dressed up eh.

@MrsWooster sounds good! I think my body now impervious to morphine I could do with a change of painkillers. Calm and a bit stoned sounds like an ideal state of mind to me.

@mowly77 I had a PICC line in during covid as my bowel/ crohns/ tumour needed super strength antibiotics and I had 'hospital at home' so was seen here daily.
I found it ok once it was in- I wasn't expecting it so it was a bit of a shock when the team arrived to do it in out patients. The only issue I had was that the long wire/ pipe attached to it get caught on everything.... kitchen cupboards, doors etc. I was aware it was there put it that way!
Sorry the man was an arse. There is nothing worse. It just shows me when someone treats me like that that my notes have not been read, they know nothing of my history, I am just another 'body'...

@Stomacharmeleon yes indeed he was just some random the man administering the chemo drip got in from another part of the hospital on a bank holiday Saturday to come with the ultrasound machine. He didn’t know anything about me or my history - fair enough - but the longer I think about the more appalled I am at they way he treated me and what he said. At the time I was at my lowest ebb and just grateful to get the drugs in me finally. But now I’m very cross indeed! I will be making a specific complaint about him; I think I will be on record as the most complaining patient in history. I do not care. My care has been appalling in so many ways so far but mostly it’s the system not the staff. But when I contrast this man’s manner to the way every other specialist trying to find a vein has treated me - with kindness and compassion and understanding - the chasm is vast.

I will also look out for my picc line getting caught on things … thank you for the advice … I thought there were things to cover it when not in use; not just in the shower but in daily life …? Ah yes it’s another instalment of Things I Never Wanted To Find Out About But Now I Must.

@mowly77 not sure about others, but my picc line was dressed and wrapped back up with dressings and a sleeve every time it was exposed, eg bloods, flushes, chemo administration etc so I never had any part exposed.

Hope everyone had as good an Easter as they can.

I am 3 weekly Pax chemo in and 9 to go, restarting again at 11am today. Had to be stopped last Monday due to severe neuropathy for a week but that had pretty much all resolved in week so starting again today. Am starting to lose hair quite fast now so have cut hair to ear length, miss my long hair but was getting everywhere in my mouth, and much better like this. Will imagine will all go now though falling out much slower at the moment. It fell out much faster at the back where no frozen peas.

As a week we decided to add 2 nights on to the free night in hotel we got paid by the cancer charity, which was lovely, room with river view, lovely dinner and breakfast. We went on to Pembrokeshire and stayed in a lovely farm B&B with lovely homecooked meals (owner used to be a chef) and went on a boat trip to Skomer and Skokholm and saw puffins, seals, gannets, lighthouses and lovely coastal scenery, on a sunny day and sun plus water from boat made lots of rainbows.

DH did when dropping me off first for the boat after he took DS and I to the boat try to do a three point turn on a stony beach Car got trapped with tide coming in. Took about 4 hours, 20 big strong men, and 1 tractor to get it out, 30 mins before it would have flooded. Then the B&B made us dinner even though were late and had put drinks in our room and the lovely people who helped us checked we were back OK. Photos below.

Car on beach

Puffins, seals and dessert at B&B

Car rescue

[quote TwoBigNoisyBoys]@mowly77 not sure about others, but my picc line was dressed and wrapped back up with dressings and a sleeve every time it was exposed, eg bloods, flushes, chemo administration etc so I never had any part exposed.[/quote]
Same here, it didn't have a long thing just two connectors and then I had a kind of stretchy tube bandage thing that went over it when not in use, I have a picture of you like?

@Silkierabbit wow what an adventure you've had! Sounds lovely (apart from getting your car stuck) x

Hello everyone, thanks for my welcoming advice from @Silkierabbit ((sorry about your cat) and @MothralovesGojira.
I’m waiting to hear if my covid test is negative and hopefully I will be going tomorrow to have a radioactive dye injection in my lymph nodes and then I go to another hospital in the afternoon for lumpectomy and removal of lymph nodes. Dreading it but be glad when it’s all over.

Hello @MissSmiley yes picture please that would be great - DM me if you don’t want to put it on thread, would like to know where on arm it is too - I mean I am sure they will tell me all this before I have it but I would like to be prepared!

I am very faint positive line on my covid test today so think will be negative tomorrow. My sister has finally inevitably succumbed to it; DP is on day 7/8 hasn’t tested but obviously is being an arse with it (“I’m ill too!”… we ) so we are really limping along as a household now with no help. I am praying my DD will test negative tonight (she seems fine, slight cough) so she can go to nursery tomorrow!!! We all need it.

Today’s problem is terrible nausea AND I haven’t even started any chemo. It must be anemia / blood disease. Anyone else with this issue a chemo nurse recommended something called Queasy Drops which you can order from notanotherbunchofflowers. I’ll let you know if they’re any cop. Have orders three tins so let’s hope so. Meds wise I’m using cyclizine as it worked well in hospital in my cannula - I just got nauseous before mealtimes; had that; ate and was ok for a few hours. Now it’s constant and miserable - I just can’t imagine what the chemo is going to do to me. Wow what a long moany message.

@Silkierabbit lovely to hear about your holiday and adventures and see some of your pictures!! Glad you all had a great time.

Here you go @mowly77 not sure if you can tell, it's upper inside arm

Thank you @TwoBigNoisyBoys for the info and reassurance about PICC lines. I'm having one fitted next Monday due to having very sad weedy veins in my right hand - left hand is fine and dandy but not an option because of the lymph mode removal on my left side. I had my first Herceptin on the 7th and it took four attempts to get a cannula in before they gave up and went in further up my arm but I had to go back the next day to start TC chemo so not getting the cannula in was not an option. It took four attempts again but it did go in on the fourth go but was agonisingly painful on each try so an urgent request for a PICC was put in before I went home. My poor hand was so sore and bruised that it looked like it had been run over by a bus so I sympathise @mowly77.

Predictably enough the arrangements for my chemo continued to be a shit show but do seem to be getting better now although I am still getting told things that I should have 'known' that I don't. I feel as rough as f**k still even 10 days post first cycle but that could probably be down to bring excessively tired from working right up to the night before and the huge amount of stress the hospital has put me through.

You're very welcome @Mycatispretty. I hope that everything goes ok tomorrow.

@mowly77 sorry I didn't mean to worry you. I didn't always have a sleeve on but they are well protected.

Has anyone had radiotherapy as an inpatient and can I ask if so how it was?

Ondansetron has been a real help for nausea, Mowly.

I had aprepitant as my first line anti sickness med and they worked brilliantly. I didn’t like Ondansetron because it made me feel like I had a hangover.

I had a PICC line with my first round of chemo, it was easy to put in. Mine was done privately by a consultant radiologist under just a local anaesthetic and I drove myself home. The only problem was it needing a weekly clean and flush.
I used to use hypafix tape to hold the end in place and wore long sleeves as it was winter.
Hope everyone has had a good Easter weekend, ours has been full of house jobs and gin. I start radiotherapy tomorrow finally and I need to chase up my port removal as I now have a second hole and I’ll be able to remove it myself soon.

@MrsPnut are you having it as an inpatient?

I had my fourth weekly chemo today and they said will need a PICC before next weekly one, urgh but necessary I guess. Kids back at school tomorrow.

Mowly I have ondasentron and another one dom something, the dom one seems not at strong. Never had nausea or sickness with pax so tend not to take either. Get side effects from ondasentron of constipation to point of pain and bleeding by end of week, indigestion, chest pains from indigestion though I find its fine in small quantities so I do 1 they give you at the chemo and 1 after now, not 5 after but try them and see how get on. It certainly stops sickness and nausea. They have lots of different tablets though so one will definitely work and think its just trial and error on quantities but pax does not really cause nausea and sickness well at least for me.

They told me PICC going in will be about 2 hours but its only about 25 mins fitting it but they said do x-ray after. I saw someone having theirs removed in chemo session and was a few minutes and seemed OK.

Hope radio goes OK tomorrow MrsPNut good its happening at last.

Mycat Hope operation goes OK. I had mastectomy and SNB and then second full lymph node clearance. Both were fine and minimal pain from first, more pain from second but resolved in a week and pain killers stopped it. Get some painkillers in though, paracetamol and ibuprofen, was sent home with none first op, second op NHS sent me private and got a carrier bag full.

Mothra Hope chemo effects improve, they should do in theory, if not give chemo line a call and see if can help.

Love to everyone.

@Stomacharmeleon No outpatient. I know some people having brachytherapy for cervical cancer have it as inpatient.

I’ve got 20 sessions to do but I did 25 sessions before for my other cancer. I’m an old hand at this.

Thanks @MrsPnut and @MrsWooster excitingly I haven’t tried those two (although tried ondansetron with first cancer ten years ago I think and didn’t work but am hopeful things could change).

I’ve tried Metoclopramide on advice of the hospice nurse who came round to assess my drugs but it gave me the worst diarrhoea of my life and I can’t even remember if it stopped the nausea so no thank you. Then prochlorperazine which you supposed to melt in your mouth to bypass stomach and usually for migraines, but I was taking that to no avail before I ended up in A&E after vomiting myself half dead so I’ve got bad memories of that one.

I just might have to start them again one by one though … weirdly it eased off tonight after had to go to hospital and get bloods done; maybe it was the 3 seconds of fresh air between car and back door. It’s coming back now, I feel it, but hopefully I’ll be asleep soon.

Meh.

Thank you @MissSmiley for the pics of the picc! Yes looks doable covered up. Maybe I can get a jazzy summer cover if I am ever well enough to leave the house again. Im only thinking about things in 12 week blocks as my brain just can’t compute that these things are actually “indefinitely”. And nor should it be frankly! I can deal with thinking about having Pax and having a picc line for 12 weeks and then we’ll see.

The clinic day for putting picc lines in at my hospital is usually tomorrow; it’s my birthday (not that I give a shit) but really … what a way to spend a birthday. But I’ll probably still be a bit covidy so they did say they could probably arrange another appointment on a different day.

@Mycatispretty yes totally agree re: getting DRUGS to go home with/making sure you’ll have some at home. Do you have a good GP? When I had my ovaries out (waste of fucking time that was) they sent me home without any but the next day I called my GP and he immediately made sure I was prescribed strong painkillers & even oramorph which I didn’t ask for or need! But still nice of him to think of it I guess …

Happy birthday @mowly77

Good luck @Mycatispretty - I think you were diagnosed at the same time as me, so good they've got on with it. I'm going for my first meeting with the consultant about my hysterectomy, though she's a Dr so I think that means she won't be doing the surgery, I'm not quite sure what to expect.

Happy Birthday Mowly I also had a chemo birthday thankfully not on chemo day, one poor person they were wishing happy birthday to on her chemo session and it was a long one. We can always have a day later I guess though mine was seeing the puffins and night in hotel from cancer charity so had mine. Hope you get to do something nice at some point before too long, I find you have to grab things last minute as soon as you feel reasonable. The charity SomethingToLookForwardTo on website has lots of gifts and gives preference to stage 4.

@SierraSapphire

Are you at a cancer centre or a local general hospital? You really need a gynae-oncologist for your surgery. Mine doesn't have one but refers to St Thomas'. It does make a difference in outcomes or avoiding a second surgery.

Re painkillers, I had a TAH, vertical incision. Tommy's wary of heavy duty painkillers. Just ibuprofen and paracetamol on strict timetable. Was fine. Local hospital dished out morphine like sweeties and sent me doolally.

Has anyone heard from Top? Tiggering down the English Channel? Or up? Inspired me to get off laptop and mow lawn. Use it or lose it.