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Cancer Support thread #78 - Newbies welcome

999 replies

MrsPnut · 03/03/2021 08:10

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

OP posts:
DuckingCancer · 16/04/2021 13:58

Sorry I name changed for a different post from @ChickandLamb and it seems to have stuck me here.

quinin · 16/04/2021 14:07

I've just had my 3rd round of chemo. I'm feeling tired but not unwell, so grateful for that. I've got completely off hot food so I'm sitting in bed eating peanuts. H has taken the DC's out. I'm trying to muster up the strengths for a walk.

I have one more round of chemo, then a PET scan and hopefully surgery. Then more chemo.
Feels like such a long road but I am 3/4 through my first bit of chemo already. It's all moved so fast. I still have hair though and I am chuffed about that!

KitchenFishCurry · 16/04/2021 15:28

@MrsPnut I had my drain out this morning, the nurses were going to keep it in until Monday but changed their minds. I feel like a new woman no longer a (drain) bag lady. They've taken off the dressings and I just have one small one where the drain was. I'm allowed a shower on Monday I can't wait.

MrsPnut · 16/04/2021 18:00

@KitchenFishCurry I am so jealous, I have to wait longer for my shower. DD2 washed my hair in the kitchen sink again this morning.

OP posts:
KitchenFishCurry · 16/04/2021 18:44

I can wash my hair in the kitchen sink its very short, but its not the same as a shower. I've booked a haircut for next weekend and will have to face the wrath of my hairdresser I promised not to cut it myself again after the first lockdown but I gave in , there's plenty of random sticky out bits for him to do that I can't see round the back so hopefully I can play the sympathy card.

Acinonyx2 · 16/04/2021 19:17

This is one time having no hair will be handy. No phone call - so guess it will be Monday to find out what surgery I'm having.

HumphreysCorner · 16/04/2021 19:41

Hi all, a week into the EC and slowly feeling human. Going to catch up with you all.

Much love

HC x

balkanscot · 16/04/2021 20:47

@Acinonyx2 @MrsPnut @FizzyOrange waving at you all with my empty wallet!

Waving at @DuckingCancer I am also oestrogen +, apparently this is one of the slower growing type of BC. On the 1-8 scale of oestrogen receptiveness mine registers at the top. Shock Sending you good vibes for the forthcoming surgery.

@quinin well done for getting through 3/4 of the treatment! Flowers I had been ticking mine off like a prisoner awaiting her release.

balkanscot · 16/04/2021 21:01

@Acinonyx2 ugh, making you wait all weekend! Hope they get back to you first thing on Monday morning.

@HumphreysCorner good to hear you are getting back to human state again. I usually felt like death for the first 6 days, then reasonably fine for the next 7 days, before the torture would begin again (rinse & repeat for 4 cycles). I would feel nauseous straight after the nurses would start injecting me with the Red Devil. 🤢🤮

I am feeling SO meh about the relaxation of travel restrictions (Scotland) from today. I have no real desire to rush anywhere, or do anything “exciting”. I went into a particular shopping centre for the first time since the shitshow of my cancer reoccurrence (August 2020) and I shed a few tears under my sunglasses. I felt so stupidly emotional! Confused I used to go there a lot (to M&S in there as they were the only shop open) during the first lockdown, all the while the bastard had already been making itself comfortable in my axilla, and I was completely oblivious to it. So, yes, emotions. Damn! I sometimes think how will I be able to cope in the newly reopened society knowing that I have irrevocably changed forever? Seeing all those people sitting on picnic blankets in parks made me feel... well, actually, I didn’t feel anything and I just wanted the world to go back to its quiet lockdown self. I mean, I can’t believe I am even saying this!!!!

Acinonyx2 · 16/04/2021 21:12

@balkanscot can't remember the last time I was in M & S. Happy days.

Some friends discussing/moaning about holidays this year Hmm Yes very hard to get worked up about that. (We have got a short UK break booked in August.) I guess we're in our very own private lockdown.

Sometimes I find myself looking at stuff and just thinking about the fact that I'm able to do it at all: 'The wonder of the world, the beauty and the power, the shapes of things, their colours, lights and shades; these I saw. Look ye also while life lasts.' - Alexander Morton's memorial. It's not a miserable kind of thinking - just an observation.

I'm hoping no news might be good news - that they're trying to make it work - and it's not just that the lady went home and forgot/didn't have time to call me.

Acinonyx2 · 16/04/2021 21:13

@HumphreysCorner EC can be tough going - wishing you well.

AlbertCampion · 16/04/2021 22:09

Keep on keeping on @HumphreysCorner!

@Acinonyx2 Thanks for your reassurance about work - I think I am maybe expecting too much of myself, too soon! I'm sure your chapter will be brilliant when you are well enough to write it!

I have had my FINAL EC chemo! Wept a little bit as I walked out of the unit - I hadn't realised quite how desperate I had been to finish. Of course, now I am feeling headachey and nauseous and tired and foggy and like shit, but it is for the last time. Have been told I can't take paracetamol still as liver function not quite there (although good enough to risk chemo) so the only option left is codeine as my UC doesn't tolerate ibuprofen. Trying to hold off for as long as possible but may well cave.

Sending lots of love to everyone. xx

HumphreysCorner · 17/04/2021 09:59

Morning ladies

Really sad to hear about Helen McCrory passing away. 🥲

@balkanscot I'm the same, spending like a lunatic as I feel life is too short. My PayPal credit is rocketing.

@Acinonyx2 hope you get everything done in one op.

@JeanLannes welcome, I am 51 and have triple negative invasive Ductal BC diagnosed a few days before Christmas. I've had 9 chemos and 1 of 3 EC Red Devil chemos. My cancer was not given a stage even though I asked. Good for you in Barclays, I am a timid person who daren't say boo to a goose

@KitchenFishCurry hope your recovery is speedy.

@HerbalRefreshment bummer at self isolating at this time. Fingers crossed your counts are high enough.

@merlotbythefire fab that surgery removed all cancer and the lymph nodes are clear.

The EC has given me ulcers on my lips and spots full of pus which I'm avoiding squeezing but thankful my mask covers them. They are so sore.

Went to have my PICC flushed yesterday and of course it's blocked so have an extended appointment for the 26th so they can put drain cleaner down it and flush it out an hour later to hopefully clear it ready for EC the following day. If not I'll be cannulated again.

I've started doing exercises on the Wii Fit but every time it weighs me it screams too high. 😂

Big wave to everyone else. 👋

Enjoy the sunshine 🌞

HC x

Acinonyx2 · 17/04/2021 10:00

@AlbertCampion that's great that you finished your chemo I am really pleased to hear that. I think you had your surgery up front already? So what's next - are you done?!

Bloodybridget · 17/04/2021 10:00

Morning all! Sorry about silence, have been feeling very sorry for myself because of beastly mouth ulcers. The final chemo seems to be unleashing its worst, one or two side effects at a time, it's like the plagues visited on the Egyptians Sad

@HauntedDishcloth how lovely to have Devon to look forward to! Definitely get in that hot tub, you might even feel like a glass of something fizzy while you're there!

@DuckingCancer I am sorry about your diagnosis; waiting for more appointments and a treatment plan is horrible. Hopefully you will feel calmer once you know what's coming up.

@Lunificent hope your first chemo treatment goes OK for you on Monday. I got my hair cut very short before I started my first lot of chemo in 2019, and as soon as it started falling out had a head shave, I'm squeamish about loose hairs and couldn't bear seeing it drifting around me.

@AlbertCampion congrats on finishing EC chemo. Hope you aren't feeling too grim now. Also that you feel able to crack on with your novel! I am so impressed by people who can write.

@Lizdeflores quite understand you feeling anxious re new job. Is there an occupational health person you could talk too about it - do you think you could ease into the post gradually?

@merlotbythefire that's great that the surgery was completely successful, and I hope the rest of the treatment is very manageable for you.

@thereisonlyoneofme glad to hear you are making progress with recovery, sounds like you're pretty strong now, walking the dog!

@JeanLannes well done for managing to talk to your DDs. How was the meeting with your oncologist? RE keeping family and friends up to date, I set up an email group as soon as I was diagnosed, and send updates whenever there's anything to say. It's a very big group, I figured people don't have to read the messages but if they want to know what's happening, they can. It does trigger an avalanche of responses every time, and I have to tell myself I don't need to reply to everyone . . although I nearly always do!

@HerbalRefreshment it's good that you have a date for surgery, hope you're feeling OK about it. Do you know how long you'll be in?

@cupcakesandcoffee hope the phone appointment tomorrow answers all your questions.

@rrf I have no experience of breast cancer - are you in the UK? Have you been linked with a nurse specialist?

@balkanscot your scan is just four days after mine, holding out a hand to you. I keep going over the best scenario/worst scenario in my head, trying to mentally prepare myself for anything! But glad to hear you have been reassured about the old injury.

@KitchenFishCurry going for a stroll and a coffee so soon after surgery is amazing! Wishing you many more lovely walks and slices of cake!

Also waving and sending good wishes to everyone else.

As well as the mouth ulcers, a thousand curses on them, I'm very breathless again, wondering if I am anaemic and if so will it just resolve itself? I've been assuming it will, but I might give the chemo hotline a ring just to mention it. I had my second covid vaccination yesterday, which I'm v pleased about.

Acinonyx2 · 17/04/2021 10:06

@HumphreysCorner just 2 more to go - the end is in sight! Yup - they don't call it the red devil for nothing. Hope your PICC gets flushed OK.

Acinonyx2 · 17/04/2021 10:08

@HumphreysCorner do you have access to your blood test results to check your iron/haemoglobin counts for anaemia? It does tend to slide that way and mine did - I reckon one more round and I'd have needed a transfusion.

thereisonlyoneofme · 17/04/2021 10:40

I had to ring the hospital yesterday as no follow up appointments given to me, nearly 4 weeks post op. There was a bit of sucking in of breath and silence, then a sort of apologetic mumbling of we'll speak to the doctor and let you know. Think they might have let m,e slip off the radar, good job I contacted them.

AlbertCampion · 17/04/2021 10:47

Thanks for the congrats, all! Feeling quite crap at the moment but soooo relieved this bit is over.

@Acinonyx2, I'm so sorry to hear they are keeping you waiting over the weekend. I still think that despite all the unpleasantness and pain of the physical ordeals we experience, the psychological torture of waiting is one of the worst bits. Hope they call you nice and early on Monday!

And also, yeah, my chemo was adjuvant so I had my two ops first. II have a radiotherapy booking appt at the end of the month and after 31 days I'll do 15 sessions of radiotherapy over three weeks. Then it's Tamoxifen for five years. Desperately hoping I can get some weight off before Tamoxifen starts as the consultant has warned it leads to weight gain. So fed up with being fat!

@HumphreysCorner sending you oodles of sympathy about the PICC. Mine blocked half way through and had to be removed and then refitted, and it was gutting. For all that it was a nuisance, I did love my PICC for its ease when getting treatment. Got everything crossed the drain cleaner works!

@Bloodybridget think you are definitely right to call the chemo unit. Particularly given that you had the second vaccination recently. It's probably fine but definitely as well to check and I guess if anaemia, it can be sorted quite quickly?

And v relieved that I am not the only one spending too much. It is awful because although my job is being excellent about sick pay, I also did some self-employed tutoring which I have had to give up, so our overall income is down. Plus, the roof on our conservatory started to leak very badly, so we are having to get that replaced. I really shouldn't be buying stuff. But I am starting to think about looking presentable for when all this is over, and so have splashed out on a couple of new tops this week. I need to adjust to my new enormous stomach! 😂

Sending lots of love and healing vibes to everyone. xx

Acinonyx2 · 17/04/2021 11:22

@Bloodybridget my comments to humphrey wrt anaemia were for you - I got mixed up!

Bloodybridget · 17/04/2021 12:34

@Acinonyx2 I read them as being for me! Thanks - I checked my oxygen levels which are fine, but I think I will call the hotline anyway.

HumphreysCorner · 17/04/2021 19:49

@AlbertCampion I'm on my 2nd and last PICC. If it doesn't work it's cannula only for the next 2 EC's. X

AlbertCampion · 17/04/2021 22:52

@HumphreysCorner I remember now! That really sucks. Got everything crossed for it unblocking.

On that note, I have a waterproof PICC cover (for use in shower/bath) and several plain coloured jersey PICC covers (and one floral). If anyone is about to get a PICC and would like them I would happily post them on. Just drop me a PM.

JeanLannes · 18/04/2021 07:56

Hi
@HumphreysCorner - I am mostly feisty and my current situation is slightly exacerbating that!

@AlbertCampion - well done on finishing chemo

@Acinonyx2 - hope you get your call early tomorrow

@pnut and @KitchenFishCurry - I’m sure you’re counting down the hours to your showers. Not long now.

@Bloodybridget - you do well with your email updates and responses. There are very few people irl I can enter into dialogue with at the moment.

The meeting with the onc was fine. Not a lot he can say without scans. He said the usual stage 3 we’ll be looking for a cure, stage 4 to treat. I am hoping for 3 but definitely expecting 4. Prognosis will also depend on extent and how I respond to treatment regardless of stage. Had a slight panic that I naturally have slight neutropenia but I texted the nurse and she said that shouldn’t cause too much of a problem. I’m also slightly worried my enthusiastic lockdown wine consumption will cause issues! But I’m putting that firmly at the feet of COVID. I also said that I’d he ever thinks I have less than 12 months I’d like a prognosis so I can claim my life insurance. When I first got home from my initial diagnosis DSis was here with the girls. As she left she said they should be able to keep me going for at least 5-7 years. It was a clumsy comment and not at all intentional - everyone is in shock. I’m thinking I’d be privileged to get that at the moment.

Had my CT scan which was fine as I’ve seen it a lot in 24 hours in a &e!

My eldest girl is struggling. Like me she keeps everything in but is moody and burst into tears in the kitchen yesterday afternoon. The counselling team at school will help. It’s hard being buoyant all the time as I feel the same way as them. Anxious of the unknown but hiding it. When I distill my fears it all comes down to them. Everything else is sortable on one level or another or I’m a peace with. I have lots of good friends and family but I just want to be around for them. DH is a cool, fun Dad with a lot of interests. We generally talk about all sorts. I’ve told them he has to discuss, boys (or girls) boobs, sex, friendships etc etc. Nothing should be off the table.

Was very saddened to see the news of Helen McCrory. She was a tour de force. Beautiful tribute from her husband.

Echo and MRI on Tuesday before meeting onc again.

This forum is a wonderful place to find solace, it has helped immeasurably over the past 10 days.

HumphreysCorner · 18/04/2021 09:07

@JeanLannes my permanent lockdown wine consumption has not stopped since diagnosis and throughout chemo. On the odd occasion I couldn't drink it but to DH's despair I seem to handle it well and enjoy it. I have reduced it slightly as my girls agree with DH and don't like me drinking. It just helps a bit during these difficult times. When did you find your lump and whereabouts is it? I found a pound coin size at the end of November and by the time I got the diagnosis 3 weeks later it was 44mm across and by January was 65 mm across. The chemo shrunk it quickly thankfully.

Morning all

HC x

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