Cancer support thread #77 - newbies welcome

[InOtterNews]

I couldn't see new thread so here we go...

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)

@ElaineMarieBenes The hair will return! Mine started growing again on the taxol. I finished chemo 3 months ago and now have a good two inches in some places. Grey/white, wavy and quite thick. Are you doing anything special with your scalp etc?

Oh yes, the fatigue is real and can last some time. I would say now my days are 50:50 fatigue:more energy. If you don't already, get out for a walk every day and drink loads of water. Also look at supplements that may help recovery. It seems like you are doing great all things considered!

Hi @loubieloo4. It's brilliant that you're being so calm - it must be v hard with your DH's situation but like you say, the odds are currently v much in your favour! My lump was near the nipple and felt like the flesh had "thickened" - it didn't move particularly. Both the nurse and registrar I was referred to thought it was nothing, originally. I'd definitely get it checked out but have everything crossed for you!

@Noidea2114 I know what you mean about breast shapes - I'd love to get my right side adjusted to the size and shape of my left! I had my last op in October and my breast is still blue - it's weird how long it stays. My scar goes into my armpit which raises the interesting problem of shaving - I simply can't do it in that armpit at the moment as the scar is still v red and new, and I have no sensation. Of course chemo has banished hair from my head and groin, but has decided to let that armpit grow unfettered! Typical!

@Acinonyx2 It's so great that your cough is finally starting to go, but scary that it took so long for them to pinpoint what the problem is. Is penicillin more hardcore than antibiotics (sorry - my medical knowledge is fairly woeful)? I have what looks a bit like eczema around my PICC - is that what your infection looked like? I'm just wondering if it could be something I should watch out for. I'm on day three of my second cycle and my temp has been slightly raised for me, but not above 37. Usually I sit around 35.6 though, so I am wondering if something is up.

I'm also feeling v nervous about return to school now. Both DH and DS are at the same primary but in separate bubbles - so they will each have contact with 60+ people each day. This new variant sounds v scary. I definitely share your desire to hibernate acinonyx2! But they have also been bickering a fair bit for the last few days and I am desperate for some peace and quiet while I feel so knackered. The whole situation sucks.

@Acinonyx2 they know I'm off until at least September but not sure they will pay sick pay.

Those of you who have had chemo, can you actually feel your tumour shrinking after each treatment?

@HumphreysCorner not got to chemo for the breast cancer yet but mine has shrunk a bit on the zoladex/anastrozole combination.

@HumphreysCorner yes I have felt tumour changing/shrinking but gradually over the months not specifically after each treatment - and for the first couple of rounds i couldn't feel anything changing at all. Re work, you might be surprised how much you feel up to, expecially if you enjoy your job and can do any work from home? I am 4 months in to chemo I'm in a good pattern of doing a day a week (from home), before I got my series of infections i was managing more.

@Bloodybridget I have had one session with a counsellor - I'm eligible for 4 sessions all together and we agreed the time I'm likely to need the rest is at the end of active treatment. I basically spent the session describing what's happened to me and found that alone very helpful. I think I needed a neutral audience iyswim. I seem unable to talk go anyone who cares without putting a positive spin on everything! I still feel pretty numb about everything really. The only time I've properly cried was my 3rd visit to A&E on about the 6th canulation attempt and I felt pretty cross with the universe then.

@loubieloo4 my lump was smooth and mobile, until the scan everyone was confident it was a cyst. You're doing just the right thing, almost certainly it's not a problem but getting it checked properly is the right thing to do.

@HauntedDishcloth is it IV chemo they'd offer at home? For me, I think I'd welcome any home treatment that's offered given the covid situation but I do like being able to see people face to face (or mask to mask!) when possible too. If someone will come to you to administer treatment that could be best of both worlds?

@Acinonyx2 I'm reassured to hear that about your nails - mine have been fine until last week and my index finger nail is starting to come away. Really hope it doesn't progress! 3 doses of paclitaxel left to go so fingers crossed.

@AlbertCampion penicillin was the first antibiotic discovered - the granddaddy of them all! Upside of all this is - I had been thinking I was being depressingly weak and ill since last cycle - but actually - given the infections it's amazing I haven't been a lot worse.

The prescription was just for the port incision infection - nurse referred to dr but has not got back to me about the cough . Unlike a picc, port is entirely under the skin - it's the 2 surgical incisions to put it in that are infected.

I gather piccs can be prone to infections - what has worked well for me is to take regular photos so you can compare over time and send to nurse. So I had sent 3 photos over 4 weeks before nurse said call my local practice because there was no improvement - then local GP could also look at the photos to compare.

@HumphreysCorner I've never been able to feel my breast lumps but my main node, which was humungous went down after the first treatment. I also got a pain in breast and nodes - but less so going forward. All will be revealed on pre-op MRI

You are probably due some sick pay - depending on your employer, how long you've been there etc. I had no clue about this and was pleasantly surprised.

@Lubballoo are you oiling your nails? Like pp I use polybalm and another oil and I think it helps.

Trying to think about organising my days going forward so the months are not just written off in a blur of unwellness.

Hi gang I have been lying low and trying to do nothing all week.
My armpit wound is so swollen and sore I am going to plead with the nurses to drain it tomorrow. I know they don’t want to but I have been so stoic and the wounds are so well healed and healthy it can’t be a huge infection risk. I can’t sleep at night or walk without my arm stuck out sideways.
Otherwise I’m doing okay, just fed up of inactivity.

@HumphreysCorner my lump was very innocent and I thought it was just another benign cyst. My DH felt it and was worried so to humour him I got referred. It was soft smooth and mobile and in the same place as a previously innocent one so I probably delayed about two months during Lockdown and I am GP and ought to know better!
The chemotherapy saw it off in 2 rounds and at my scans after round 5 it had disappeared and so had the lymph node.

Happy New Year to you all. I’m off for my daily very short walk.
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@Acinonyx2 I'm now diligently using some Jennifer Young nail oil that I was given! I've read good things about polybalm but by the looks of it, it'd cost me forty quid (as min order is 2 bottles) which doesn't seem worth it given i have 18 days (& counting!) til last chemo.

Do you know when your pre-op MRI will be? I think mine is likely to be last week of Jan tho I'm trying not to think too far ahead here at the moment, slightly worried that going back to scans, waiting for results etc, will send me over the edge. Must start preemptively reminding myself knowledge is power!!

@Lubballoo It's due between my last 2 chemos so early March. I know what you mean about the scanxiety.

@TopOfTheCliff do they generally like to wait to drain? (The entire concept of drains makes me

@Lubballoo I'm a preschool teacher so can't work from home but I am going to send planning ideas in. I did get sick pay when I was off self isolating for 2 weeks.

Really worried about my children going back to school and college due to possible germs coming home. School have also said nobody else is allowed to collect your child but on the days I can't do the school run I have one of my team of helpers that will collect my son.

Oncology appointment tomorrow afternoon, fingers crossed I get a chemo appointment. DH bought me a big power-bank today so I'll be fully charged with my phone, watch and AirPods during chemo.

@HumphreysCorner it sounds like you're well prepared for chemo - charge pack is a great idea. Re work I bet your colleagues will really appreciate any planning you do, as and when you feel up to it. Will keep fingers crossed you get your chemo appointment tomorrow, I felt so much better once I had that!

@Acinonyx2 I'd assumed my MRI would be after my last chemo, maybe it'll be sooner? Despite what I said about the scanxiety I am desperate to get on and have my surgery (just so it's done, without the worry that covid will stop everything) so that wouldn't be a bad thing if it speeds things up. Oncology clinic on Tuesday so I will ask!

@citybumpkin thanks for the reassurance! I have started to rub castor oil (with either a few drops of peppermint or rosemary oil added) into my scalp! I do have a tiny pathetic covering of hair (that never left - but is awful!). I used to need my hair thinning every 6 weeks and the first person to realise something must be wrong was my hairdresser when I hadn’t seen him in 8 weeks!!

Im also hoping the reviews of Perfectil ‘hair, skin and nails’ are true as start a course tomorrow! I do drink lots and go for daily walks (and agree this does seem to help energise me - albeit temporarily!).

I had the maintenance herceptin etc. yesterday and almost unbelievably my cbc results (whilst low end of the scale) are all in normal range except haemaglobin - but even that is highest it’s been for 4 months. DH made me some delicious chicken liver pate and I’ve been having it for breakfast! It was also suggested it may be ok for me to get the vaccine sooner rather than later. Not so good is am now returning to work full time (but only 3 months before I hand my notice in!).

Hope it’s not too cold in Europe but any other advice or tips most welcome!

Belted happy new year ladies. I hope 2021 is kind to you all

@AlbertCampion it might not be eczema. My skin around the PICC became so dry (after 7 months of PICC) - I switched to sensitive skin dressings and also got the nurses to moisturise the area when they changed my dressing.

Day102 post transplant I have nearly 0.5cm of hair on my head. My leg hair is now longer 😂

@ElaineMarieBenes Good news re the bloods! Bad news re the work but great you get to leave soon. I've not worked since going on maternity leave which will be 2 years ago next month. The plan was to get a job here but obviously cancer and covid got in the way. Actually I do work. SAHM is a full time job and then some!

Your hair will reemerge hopefully thicker and healthier. Mine was long, fine but loads of it. Its growing back thick and loads of it! Rub the castor oil on your eyebrows and along your eyelashes. People also use biotin alone. See how it goes with the Perfectil. I'm veggie and have a pretty good diet. I've upped my zinc (pumpkin seeds), iron (dried apricots) and added various anti oxidants (flax; green tea). I think these might have helped the hair progress.

Whereabouts are you again?

@Lubballoo The side effects of chemo can last beyond treatment. I know someone whose nails were ok during treatment but then went very brittle in the months following chemo/rads. If chemo has put you into a menopausal state then everything will be dry. I carried on the every day nail maintenance a month after rads finished (they can affect your body too). Polybalm is a bit pricey but you don't need much of it. The Jennifer Young stuff is supposed to be good. I'm now using Herome Exit nails every so often.

@HumphreysCorner have you tried Macmillan to see if there's any financial support you can get. I get ESA and if they hadn't of flagged that up I wouldn't of had a clue what I was entitled too.
End of chemo scan for me today scanxiety has hit home for me today,my next appointment with onc is f2f in 12 weeks I hope I don't have to wait that long for results.

@ElaineMarieBenes and others - how are the side effects with just maintenance Herceptin?

@Lizdeflores dear god - surely you can't be expected to wait 12 weeks!

Still checking on the incision infection and cough situation - just concerned not to delay 4th chemo on Monday.

Anyone else getting terrible chemo skin breakouts? I’ve struggled with acne on and off my whole adult life, but this week (wk 3 after first chemo) my skin has been the worst I’ve had in AGES. Thank god in a way for mandatory masking here, which at least covers some of it!

@backformore weirdly when i was having the EC chemo, my skin was the best it's been possibly ever, where spots are concerned at least. Then with paclitaxel my spots returned, then when over Xmas (possibly as I had the odd drink too) I had a few days when my spots were just awful, now back to normal.
I only get spots on my chin really so yes the mask wearing is helpful! And I feel like chemo has aged me about a decade but maybe lines are just more noticeable without eyebriws/lashes?!

@citybumpkin good point about the ongoing after effects. Sigh!

@Lizdeflores hope the scan itself was ok. Surely they will get results to you by phone, 12 weeks is crazy?!

@Lubballoo I thought I’d heard people say that they had great skin on chemo! Maybe this is just my detoxing phase and I’ll wake up one morning with a glowing complexion...(fec-d is the chemo I’m on)...

Hopefully they will phone and to be fair they haven't said I will have to wait that long it just my catastrophic thinking. @lubballoo the scan itself was fine, but scan rooms are bloody cold not what I wanted on a cold miserable day.

@backformore My skin is dreadful but I’m wearing a mask for hours every day to go to and from radio and that doesn’t help.

Can anyone tell me if I have a PICC line inserted tomorrow, whether I am likely to be able to drive home. Having it inserted in my right arm hopefully and drive a manual.
The veins in the back of my hands are too bruised to cannulate any more and I have chemo on Wednesday.

Hi @citybumpkin I’m in Dubai. SAHP is much more than a FT job (and then some!). Toddlers are so lovely but hats off to everyone undergoing treatment with young children. It must be tough. I can hear a toddler on some of my treatment days (not having treatment thankfully though mother is) - although the laughter from the toddler is lovely!

I’ve added rubbing in the oil to my eyebrows (which I still mostly have - though only top row of lashes!). I found the ‘top 8 foods to eat whilst on chemo’ and pumpkin and flax were on the list and so put in my overnight oats (also on the list!) but will get DH to get some dried apricots. Just started on moringa tea (can’t drink ‘real’ tea or coffee as makes me ill!). I’m also now lactose intolerant and can’t tell you how much I miss yogurt (though have discovered Alpro!). I also made a lovely Greek salad yesterday with a delicious vegan feta I found this week (who knew!). My Oncologist recommended a mostly plant based diet and I have stuck to his plan.

Have spent a small fortune on a 7 day gut restoration probiotics course. Still feeling the affects of the taxol on my stomach lining so will try it next week. No idea if it will help but hey worth a try - what could possibly go wrong (other than I just wasted £80!!).

@Acinonyx2 it’s only day 2 post H&P maintenance but no flushed cheeks or skin rash / new spots to be seen. Pretty sure runny nose is easing too. I am tired still - but again I think this is mainly because of the final taxol side effects party from last week (although hopefully on the road to feeling better overall). I did take weekly photos and can’t believe how shite I look after 5 months of chemo so I guess the only way is up! Gave us a little bit amusement and made me realise I might not be ready to go out and meet some friends in 3 weeks time! Also I was only in the hospital for about 2 hours! It’s definitely better than chemo sessions!

@InOtterNews good news on head hair (ignore the legs!)

Hope everyone else has a good week x

Hi all, I'm new and not sure if I should be posting as I've not been diagnosed. I found a small lump at the back of my tongue last week (had a poke around as it was suddenly painful one morning). Was bloody but seems to have settled. Had a video GP appt this morning and showed photos and have been referred to Max Fax under 2 week pathway. Swinging between absolute terror and resignation at the moment. Not sure when I'll be seen but can't stop checking my lump for changes/googling which I know I shouldn't. Have only told DH and one friends IRL as obviously dont know if there is anything to tell yet.

Not really sure what I'm seeking by posting here but its good to share with others who have been through it x

@PeachScone welcome to our club that no-one wants to join. Settle down and we’ll hold your hand whilst you wait.