Cancer Support Thread 96: It’s nearly Christmas - get the sprouts on.

[LemonDrizzle10]

New thread - old one nearly full!

sounds like good news @BatshitCrazyWoman hapoy for you!

my news.

met bcn on Tuesday. I am healing nicely. So the compression belt has to be worn at night time only now. Hoorah! She asked whether I wanted dressings off or to keep for another week. I opted for another week but hoping these will come off Tuesday for good. Then I can hopefully have a proper good long scrubby shower!

physio apt yesterday. Got beat up. I apparently gave some cording which she massaged out a bit! Ouch. But no pain no gain. My movement is coming back nicely thkugh.

I had a chat with work on Wednesday. About a potential plan to come back.

im still waiting for results of surgery to see if I need radiotherapy. But have said to work that I’m aiming to be back in time for may payday at the very earliest.

im going to initially be at home working mornings only. To ease myself back in. Then after a couple of weeks build up to full days. Then do half the week in office. Then get back to my “normal” schedule (4 days in office one day at home).

I also got told my annual appraisal got done whilst I’ve been off. (They didn’t want to disturb me so kept goals etc the same as last year). I “exceeded expectations” so have a nice 7% payrise and a 10% bonus winging my way at the end of the month. Not bad for only really working 7 months of last year.

Good news @ememem84 - that proper scrubby shower is going to feel great! Ouch about the cording though. And well done on the pay rise.

I've had my radiotherapy planning appointment, they were all lovely. Now have the list of dates and times for the sessions. Then I saw my surgeon, who is happy with me, then had my Herceptin injection. A Big Day Out for me 😂

Somehow I've lost 3 kg in the last three weeks, which is a bit of a worry....

Good stuff @ememem84 and proper decent work news too. Ouch on the cording but glad you have physio support there.

@BatshitCrazyWoman how is your mouth and appetite? Glad to hear your surgeon is happy with you. When does your radiotherapy take you up to? KBO.

My last radiotherapy is on 15th April. My mouth is no longer sore, thank goodness. My sense of taste is still 'off', but my appetite is better. I'm not eating as much as 'normal', I think because for six months my stomach was only getting small amounts and it's just not used to it.

I've not been here for a while, I felt so awful after EC 3 that I basically buried my head under my pillow for a bit and then the last week I was frantically trying to catch up with work and getting the garden sorted.

Despite being on a reduced dose my white cells were still low @ 3.2 rather than than the minimum of 4 that there was a bit of a discussion as to whether to go ahead with round 4. Anyway they did and I had that yesterday and feel like I've been hit by a train already, so I'm looking forward (not!) to 10 more days of feeling horrendous.

I've put on a bit of weight, mostly in the gap between my op and the start of chemo and it's getting me down - any one have any idea how long it might take to come off? Going from being really active (riding horses 5 days a week, walking dogs etc to being totally incapable after surgery for a while and now wiped out by chemo has totally messed me up. I am getting out and doing stuff while I can but it's miles away from what I used to do. I'm thinking about signing up for the gym once I'm done, can I do that while I'm having radiotherapy or is it best to wait till that's finished as well? My last chemo is due on 28th April if that all goes to plan so I was thinking to start end of May.

DH has his last chemo next week and an MRI and CT scan booked for the same week so at least they're getting things lined up there, and I just pray that his tumour has shrunk enough for surgery. It's going to be a tricky week waiting for that info.

Hope everyone else is coping ok,

@frostyfingers I think chemo is so so hard. Totally relate to the wiped out feeling.
I think my wbc are also really low - in fact they look weirdly low from what has been filled in in my book, but the treatment keeps going ahead so I guess they think it's okay?
On the weight thing I am no expert but my first thought is that you should be very kind to yourself. I'm not sure that we need to be berating ourselves about things like this when we're going through everything else. I need to take my own advice... maybe best to get through this shitstorm first, and then a health and fitness plan might even be enjoyable as part of recovery? Just an idea! You have so much to deal with right now.

@frostyfingers I’ve been meaning to lose the weight since I finished chemo in November. It took ages to get back to even walking 10k steps a day, I personally don’t have any energy to do more just yet. I felt like I got put back a month with taking tamoxifen- thank god im now off it - give yourself time & patience, you’ll get there.

@Iamallowedtodisagreewithyou welcome to the group. I’m fairly new here myself but everyone has been so welcoming and understanding.

@frostyfingers Sorry to hear you’re having a tough time. It’s really tough to deal with that on top of everything else. Be sure to ask the team for all the help they can give you. Not asking was my mistake.

I had my second round 12 days ago and only just starting to feel human. I was in so much pain I thought I couldn’t cope with any more. When I went for my weekly picc cleaning 7 days after chemo the lovely nurse took one look at me and was immediately in touch with the chemo unit to get pain relief sorted for me. My bones were so painful. Apparently the injections after chemo are what’s causing it rather than the chemo itself. My mouth is also really painful and I’m having medication for that. Still sore and I can’t taste anything apart from the medication which of course tastes foul…

When I spoke with chemo triage there was talk of possibly reducing the injections to 3 days only or even having none at all. However I saw the oncology team yesterday and they want me to try and continue with 5 days of injections and the extra pain relief. They said because my immunity is compromised and I’ve already got one infection (mouth) that fewer injections will expose me to a very high risk of other infections. So I’m going to try and hope the pain relief makes it bearable.

That sounds grim @gillybean2, the foul taste is one of the worst but those injections must be horrific. I'm not feeling so bad today, apart from the usual, so maybe it will be marginally easier this time, although I'm not counting any chickens.

@Littlecaf & @breastcancerpanic I think you're right, I'm going to have to park stressing about weight gain, it just feels so unfair that along with all the other shit there's that to think about as well.

Welcome to @Iamallowedtodisagreewithyou , the reasons for being here are no fun at all obviously, but everyone is very kind and helpful and you can say whatever you want and get useful information.

@frostyfingers everything crossed for DH’s last chemo and for the outcome of the scans. Sharing the weight thing with you but it’ll just have to sort in its own time. I’m two weeks pfc and realising I need to be so kind to myself. The drugs and less activity have made all my muscles weaker, as well as joint pain making it harder to move (I’ve not even started letrozole yet). Steroids and immediate impact of chemo will lead to water retention and sluggish bowels, which will ease and “drop” a bit more weight off. I hope you’re able to keep getting through the days and nights as well as possible.

@BatshitCrazyWoman glad your mouth is comfy. Lordy that budige cage mouth eh? I’ll be so pleased to lose that ick. I suspect some of it will sort when I start getting my mouth sorted next week but for the rest I need to be patient.

@gillybean2 that does sound awful. Glad you’ve had some support from the nurse but it’s no fun when you’re injecting on your own and having to deal with the side effects. FWIW I took a loratadine at night which seemed to help, as well as having a soak in some mineral salts at bedtime. During the day I lay on a heated blanket when I was able to, which helped ease the pain. It was worse on days I couldn’t move much. My final jab left me with a bruise the size of my hand, which I’m encouraging away with arnica cream. My injection technique must be rubbish!

Hello @Iamallowedtodisagreewithyou Im sorry you have to be here but it’s a great source of support.

I’m wondering about carrying on taking loratadine as there are a few studies ongoing about it as a protective factor. Must discuss with my oncologist https://pubmed.ncbi.nlm.nih.gov/32459128/

Thank you for your kind words everyone. I've name changed now so that I can be me here and then i'm someone else on the rest of mumsnet because the stuff here is so personal if that makes sense.

Had my 2nd of 18 chemotherapy sessions on Monday. I'm doing surprisingly well I have to say except for the muscle weakness. My primary was breast in 2019 but i've got secondary now, mainly in back of neck/spine and throat. Anyway, my plan is to manage it as best i can like a chronic illness.

Is anyone else on a Paxlicatel chemo regime?

I’m three weeks post op now. Dressings came off yesterday and it’s all healing really nicely. I had my (gentle) scrubby shower. What a delight!

got summoned to see surgeon this evening. Results of surgery are in. Minimal residual disease left. Clear margins. So. Radiotherapy is needed. But I’d always assumed it would be so it’s not a shock. need to get it planned etc but that’s the next steps.

@Iamallowedtodisagreewithyou i had 12 weeks of paclitaxel.

todays fun. Went on a class trip with my youngest (dd age 5.5). To the farm. Met the 400 strong herd of our lovely beautiful jersey cows. And some babies. Some only a couple of days old. Made butter. Learned about cows. Super fun.

@ememem84 how lovely to have that gorgeous scrubby shower. Sorry to hear re radiotherapy but at least it is an expected room in the ghost train.
the farm sounds wonderful.

@Iamallowedtodisagreewithyou I also had 12 weeks of paclitaxel. Then 4 cycles of EC 2 weeks apart. I had my surgery prior to chemo (ended up going in 3 times).

I was hoping you wouldn't have to have radiotherapy @ememem84 , as I think you have to come over here and stay for that? Do you know which hospital you'll be having it at? Bet the shower felt great, and the school trip sounds lovely, and I'm glad you're healing well.

@Iamallowedtodisagreewithyou I had 4 EC, followed by 12 paclitaxel. I was quite unlucky, as it badly affected my skin and mouth. My mouth was too painful to talk properly sometimes. I 'missed' one chemo as I had a mouth infection. I was given two strong antibiotics which made me feel really ill. But otherwise I felt okay on it, apart from the tiredness (when does that end??).

I've got physio tomorrow, and hopefully they will give me some idea how I can build up muscle again (have lost a lot). I had my port removed on Tuesday 🎉🎉 so happy about that. They weighed me before the procedure and I'd lost nearly a kilo since last Friday 😱 I thought I was eating better, so this is beginning to worry me.

@BatshitCrazyWoman @dancingwhilstfacingthemusic

i expected I’d have to have radio to be fair.

and yes you’re right I need to fly to Uk for it as it’s just not possible here.

annoyingly if I’m a private patient for radio I have to pay for my travel and accommodation. If I’m a “public” patient everything gets covered for me BUT I don’t get a choice of venue. As a private patient I can choose which centre I want to go to.

the go to for jersey is Southampton. But flights only go twice a day (one early morning and one late night) I think. And they are always delayed or cancelled.

if I go private I can go to London. Two airlines fly there. Loads of flights throughout the day.

so it’s a decision to make.

but at least we know next step.

@ememem84 I'm a private patient, and my radiotherapy is at Guy's private cancer care. I've had my planning CT and they are all absolutely lovely. I don't know if that's a recommendation?!!

@BatshitCrazyWoman I had my genetics testing done by the team at guys. Amazing team.

my oncologist favours the marsden or the Cromwell I think but to be honest I don’t care which hospital as long as it gets done!

apt with oncologist to discuss radio on Tuesday.

Oh crap I’ve found a small lump in my other boob. I’ll phone gp/ breast nurse first thing as I don’t know what the fastest route to being checked out will be. Hoping that it’s just hormonal changes / effects of chemo. I really don’t want to go through all this again at any point let alone so soon.

Sending love @dancingwhilstfacingthemusic hopefully itll be nothing. Xxx

are any of you in Manchester? Where would be good to go to get bras fitted post single mastectomy and reconstruction? I’m there in may and figured there might be better places

Sending positive vibes that it's nothing, @dancingwhilstfacingthemusic

Oh hell @dancingwhilstfacingthemusic , will be keeping everything crossed for you. I hope they see you in the shortest possible time.

Phew (understatement). Phoned breast nurse yesterday and they booked me in first thing this morning. I’ve had an examination by a highly experienced nurse who also reviewed the mammogram on that breast which was done last year. She’s happy that it’s a normal fatty lump.

This has made me more emotional than anything for a while as obviously it’s raised a load of the trauma. I just don’t trust my body right now, which is probably fairly normal. I’m so grateful it’s not sinister and am going to take things steady / be kind to myself for a few days to process it.

Thank you for your kind words.

I'm so pleased to hear that @dancingwhilstfacingthemusic , I can imagine how stressed you must have been.

We've had good news here too, DH's tumour has shrunk by almost 50% and they are confident that they can now do the surgery which was deemed too dangerous 3 months ago. We don't have a date yet and he will continue with chemo until they do. I know there's a long way to go, and that the surgery itself is massive thing but it does feel like there's a little light in the darkness that has been our lives for the last 6 months.

So glad to hear that @dancingwhilstfacingthemusic - what a relief! I have been reading about the not-trusting-your-body-after-cancer issue here (https://workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf) - maybe you've already read it? I know I would be the same. Need to work out how we can process the trauma...

And @frostyfingers that is really good to hear that they can do the surgery - v glad for you and your dh.

I guess in a much more minor way I have had some good news too. Sorry this is a bit long and please do skip as I am putting in detail just because it is helpful to write it out! The last I had heard the oncologist wanted full axilliary clearance (I think is the term), but the surgeon thought this was not needed as only 1 in 4 sentinel lymph nodes had cancer in, and a study showed that radiotherapy is just as effective in these cases. It seems that the oncologist has now decided to agree with the surgeon so there will be no more surgery. When I heard this it was a bit like a switch was flicked in my mind and I could suddenly see the pathway ahead of me and the light at the end of the tunnel. I think it's because I had been imagining that they would take the rest of the nodes out, and then if they found more cancer there might be more treatment so I didn't know what would happen, but if they are not taking them out then I can't see how any other info could come in and so the decisions are all made. (Unless they do e.g. a blood test or general scan of me to see if there is any cancer elsewhere... do they do this?). Anyway assuming that there is no more info to come then the pathway is...

STEP 1: Finish chemotherapy. I have done 3 EC and 1 Docetaxel - so 2 more Docetaxel to go.
STEP 2: Recover from chemotherapy and prepare for radiotherapy. (Am imagining this bit might be nice... perhaps my hair will fuzz back in where it has thinned? Perhaps my energy levels will rise and food will start tasting good again? I'd like a blood test to check iron/B12 levels and start taking supplements, etc...)
STEP 3: Have radiotherapy. I don't yet know how long this will take.
STEP 4: Final treatment things including recovering from radio, meeting with oncologist, starting whatever hormone treatment is prescribed, doing a 'moving on' course of 2 half day sessions, etc. (Anything else that should go in here?)

Possible STEP 5: breast reconstruction - but this is a while away and optional. I have a date in December to meet with the surgeon to discuss options. I already had one reconstruction with implant that got infected and needed to be removed, and am now flat on one side, so I guess options will be limited.

I started just vaguely lurking on the great recovery thread. When in this process do people join it? I know I am a long way off and don't want to tempt fate, but something about the springtime is making me want to look ahead and plan the future...

@ememem84 not sure if this works for you but I have booked a fitting with Nicola Jane: https://nicolajane.simplybook.it/v2/#
At first glance though there doesn't look to be a place to book in Manchester but perhaps I am missing something...