Cancer Support Thread 98: support for those diagnosed and going through treatment

[FcukBreastCancer]

Hello 👋

Oh I should be working but I have just say this. I’ve been ordering NICE clothes quite alot ( not a huge online shopper for myself usually) and definitely did the dance like no one’s watching at the bowie tribute last week. Virtually first one up I was 😎😂 Going clothes shopping with my beautiful 12 year old granddaughter this week and she is getting SPOILT .
Right back to work see you later xxx

Can they do something proactive about the ovarian cancer @Bangersndmash? Presumably they can offer a double mastectomy? One of our number, @cannaecookrisottohas triple neg bc and young children.

i didn’t cold cap because I had the first few weeks as an inpatient so they couldn’t offer it. I lost most of my hair (although it’s actually okay because I’m finding the whole “wash and go” element quite freeing). I’ve been off the pax for 3 weeks now and I’m starting to notice my hair is thickening back up. How about you? Are you cold capping?

i realise you’ve been doing this a while now but please don’t underestimate just how tired and exhausted you get on chemo. I hope you have good support with your children- I can’t imagine having to do this and look after small children.

I have taken January off work. I’ve been sorting my life out - doing my LPAs and will and end of life and funeral arrangements, that sort of thing. Probably rather morbid but suits me. I’ve also just sorted an alcove in my bedroom with a lovely recliner and lots of the books I’ve not read yet. We’ve just booked a few days in Durham too. I’m looking forward to that. We’ve got a couple of other weekend breaks arranged too. They are dependent on our son passing his driving test next month (fingers crossed!)

I guess I have to go back to work at some point too!

How about you? What are your plans? It’s difficult when you have the weekly tie to the chemo ward. Good that you are doing Ocado and lots of treats😊 DH told the oncologist I was tanking the rest of the Christmas chocolates today - what a splitter. thanks DH!

Good for you! Enjoy that shopping trip @NonamelassI’m glad you were right up there for Bowie tribute 😎 Did you do the full make up?

Thanks @Ventress - pelvic MRI on Wednesday, then treatment starts early February. Slept very badly last night, but managed a run this morning, which cheered me up. Going to get them in while I can!

@Ventress flipping heck that hospital stay was a scary time to be told about. It sounds like you had great care and a great doctor.It can’t have been easy to hear 💕💕 I like the Montaigne quote !!
@Bangersndmash Get all treats everything you fancy absolutely. i second @Ventress two kids under three makes for busy days without throwing chemo in on top. How are you feeling ? I had bc at 35 and nurses told me that age was advantage in that respect as our bodies manage the effects better. Don’t know how actually true that is … I’ve had FEC ( first time) then second time taxol and another knackering chemo in between the taxols which I think was EC (?) radiotherapy and brachytherapy and loads of hormone therapy
@Onewildandpreciouslife like @Ventress I love your name🙂 and I agree that a recurrence might not be as bad as you imagine. It could still be fairly localized .

Really carpe diem should be everyone’s motto shouldn’t it? It just gets forgotten in the daily trudge of life. You never know what’s round the corner anyway .
If I could go back I would tell my younger self to stop worrying so much ( I don’t just mean cancer) and also tell myself I definitely wasn’t fat 😂

@Ventress I actually have no idea. They sent me my results of my genetic testing at Christmas and I have to wait until February to find out what this means and my options. Lovely isn’t it. Adds so much extra stress. No one has discussed my surgery, but I have an oncology appt soon so will be asking there or my surgeon. I assume it’s a DM. I also assume they might suggest removing my womb. I really don’t care what they need to do, just get it done.

i have EC coming up soon. My nurse said today they call it the Red Devil so that was nice of her… now I’m anxious and I never get anxious about chemo as it’s (hopefully) making m better.

Yes it’s truly and utterly exhausting. Running round after two littles, chemo weekly, I’m also working FT too. It’s not for the weak! I was also told my body could handle it as I’m young so they have given me a big dose as they said… it’s like the Ronan meeting song… life is a roller coaster just gotta ride it.

Doing the cold cap, with relative success, my hair has been and is falling out but if you looked at me you would never, ever know. It’s very long and reasonably thick, I look like a healthy person on the outside. You truely never know what someone’s going through.

how was the radio therapy? I’ve stayed off google as it’s a scary place, and only recently worked up the courage for this corner of MN. Perhaps someone who’s had surgery for DM or M could tell me the recovery time and how they felt?

Thanks all for reading my ramblings. Had my chemo today, hopefully kicking some ASS ✨

@ventress wow that was startling news from the oncologist.
i am brain fried after chemo so cant find sensible words but yes we should all be seizing the day.

@Bangersndmash because of brain fog i cant seem to see you until ventress mentions you, but sorry to see you hear and welcome and yes to treats for all of us.

also sorry cant mention all new comers, am back after long day of being nuked, but welcome and i will try to catch up when brain and body functioning properly

Gosh you’re doing chemo and working FT and two little kids? You absolute hero !! Can you have some sick leave? I had EC its the in FEC . Yep it’s a bit hard but you will get through it ,honestly, and with me it was hard for the first week then I felt better bit by bit( it’s usually every three weeks so you’re not knackered for the whole of that period you get time off ) xx
Radiotherapy is nowt at all. Easy peasy compared to chemo in my experience . I can’t tell’ you about mastectomy but will know more tomorrow after I see the surgeon ( I’m asking for a double) The op is in February so I’ll be able to tell you how it went 😉
Yep I was told they were giving me a big dose at 35 and at 50 ( other breast different type of cancer ) to stop it coming back and it’s worked really to be fair as I’m 59 now. The first breast is now playing up again so it’s off with its head!!

@Nonamelass sorry whats a FEC? Yes you will have to tell me about it, fingers crossed it all goes well. I think I’ll be having a double too, are u planning on reconstruction or just full “off with its head” 🤣 I am also a similar age to your first diagnosis. Hoping and praying I can live a bit more life for my babies! YES FT, chemo, babies, soft play carnage. I find it’s the best thing for me, keeps me active and not a lot of time to dwell, and when I put them to bed I collapse with them!!

I bet you collapse into bed !! I am in total admiration !! 😉
My first chemo was 24 years ago and it was called FEC.I only had that and no taxol that time So basically it was EC with something else mixed in. Tbh even though you are full of energy you might want to sort some time off for EC ( don’t be scared it’s doable but just a bit knackering for alot of people) Îm sure the hospital will explain that though and you might react differently anyway.
I am thinking of going flat at least for now. I’m very young in my head ( about 20😂) but Îm nearly 60 really , so not that bothered . Î ´ve been on line looking at padded bras that look pretty good . I want flat cos the terrible tits seem to be taking it in turns to have cancer and in my head it’ll look better than lopsided and be easier to manage . I’ll ask for an option of reconstruction in case I change my mind. îll see what the surgeon says tomorrow and report back 😊

Holy crap! Full time work, chemo and small children. I am also in awe @BangersndmashI’ve googled FEC and it says it’s a three way combo for bc- fluorourcil, epirubicin and cyclophosphamide. Sounds like it is very effective in early high risk or local advanced tumours.

the EC (or Red Devil) isn’t so bad or so I’m told. My sister had the 3 lots over 3 weeks version and found it less unpleasant than the taxol. Hope it goes well for you!

The taxol should have helped melt the bc. I know it did for me. I didn’t have any surgery (or haven’t as yet anyway). I think , for you both, that double sounds like the way forward. I hope you both get what you need. I hope the meeting goes well today @Nonamelass🤞

I did the genetic test (as my sister has also had bc recently) and we were both negative for genetic. But we were both hormone positive for the bc so very unlikely to be genetically based. Apparently only 5% of bc is genetic. Wouldn’t stop me having everything removed if it was likely to cause other cancer though. Perhaps easier for me to say at 50 though.

Hope chemo went well for you yesterday I @Bangersndmash

Have you had your rig out yet @ForestFlowerFairy? I hope that went smoothly if you have.

I’m back on the ribocyclib today after my week off it. I’m quite relieved as the Letrozole alone seemed to really enhance the menopause symptoms. Not sure why that would be. I’m going to stick with the 4mg steroid today too. Perhaps drop to 2mg tomorrow, we’ll see. I look like a German burgher with my round red face caused by the steroids 😂

The rig is out!
It now looks like I have 2 belly buttons, but it's far better than a horrible plastic tube dangling out. They said 7-10 days until it's healed so I'm counting down to having a bath!
I am back at work, mornings only and it's absolutely knocked me over....but we also have the builders in and we had a trip to IKEA this weekend, the van is still loaded as none of us have the urge to unload 🫣
I suspect I've done the usual thing of trying to do too much too quickly.

So glad you have your recliner and your quiet space.
Hello to all the new people, returning people - I finished chemo and radiotherapy end of October. I have head and neck cancer, recovery has been brutal but hopefully I'm on the mend, now it's the long wait to find out the results

Hooray! I’m pleased it is out @ForestFlowerFairy. It must be a big relief for you. And back to work part time too. Everything is going back to normal 😊 It won’t be long before those scans take place 🤞Are you able to eat again?

Did you get those jeans you wanted?

DH raised the “IKEA” word this morning as DS spilled a can of coke all over the living room rug at the weekend and cleaning it hasn’t really worked well. I am not sure I’m ready for IKEA yet, or work!

I’m back waited ages to see surgeon but it was really worth it. She’s so lovely and took so much time explaining everything. Talked through reconstruction. I could have it I wanted but I’m going with just mastectomy and she’s going to get back to me before the op about a double . ( they don’t make decisions like that alone it’s all team decided ) will see therapist to be sure but I know I’m sure. I want the easiest least invasive option and one tbat doesn’t increase the need for more hospital appointments and waiting rooms.. Once all treatment is behind me I might go back and have reconstruction but in my heart of hearts I can’t see myself bothering.
@Bangersndmash surgeon said simple mastectomy is about an hour op with one night in hospital and a drain with nurse checking it at home. A month off work. Can’t remember for a double but didn’t seem to be terribly long either.

@Nonamelass i had no idea recovery was so long. My surgery is in April and my surgeon said he would be in touch before then to discuss.

Im glad your appt went well and you got the answers you need, hopefully you can have a double.

I’m abit naïve, and do NOT google as it’s too stressful. What is the recovery like, are u able to drive or anything? Assuming it’s no heavy lifting.

with reconstruction do they just use fat from other places ? Or do they use an implant? I assumed it was just fat from your body or your breast.

that’s good to know. My chemo nurse also said that most people who can’t handle pacli go into EC and it’s not as bad, and I’ve managed this pretty well. Minus all the 50,000 side affects I have (had them all).

I am only 35 but also want everything removed if it means I get to live longer. Unfortunately I did want another baby; was planning one before I found out the news… and could have had ivf but delayed my treatment 6-8 weeks which no one wanted so doesn’t look like that’s on the cards anymore.

i also think my chemo is making me peri menopausal. My periods have stopped and the night sweats are CRAZY. I have to laugh otherwise I’ll cry 🤣😵‍💫😩

me to me weekly :WHAT NEXT BUDDY?!

Hi all,
I introduced myself a few weeks ago - stage 3 bowel cancer (it feels like this should be an appropriate thing to open with!)
I've had a right hemicolectomy and learned yesterday that I'll need chemo. Cancer was found in just ONE lymph node out of the 24 they removed, the traitorous little fucker!

What on EARTH will chemo look like??? I've been broadly told it'll be over 3 months, probably a mixture of infusion and tablets. I'll learn more in a couple of weeks when I meet my oncologist, but am I likely to be able to work at all?? I do face to face work in a company with 300 employees, so would I be wise to go sick for the full 3 months? And what's recovery going to look like?

It's a whole new world I'm about to step into - please give me some advice!

Hi everyone. Just a quick hello before my radio starts today

I've felt a bit like a fraud the last few weeks as fit and well, but stayed off sick...

I'm sorry to those who have had bad or stark news @Ventress and @watchadewin

(I have primary breast. 2 surgeries now radio. Should avoid chemotherapy. 2 fairly young kids)

I cried when discussing possible genetics referral due to the implications on my girls. Otherwise I've been fairly solid since the news of second surgery.

Right, better get ready for my cooking i.e radio.

@watchadewin ive only just recently joined and feel there are more seasoned vet’s in this group… but I’ll add my two cents

i started chemo in Nov, mix of drugs inc immuno drugs and chemo, pretty heavy duty dose, having it weekly. I am still working, but I am able to wfh. I wouldn’t want to go into the office as a) I’m not that presentable b) my commute is long and tiring and c) it’s a germ fest at the best of times, I absolutely would not want to pick up the office cold or worse.

i have infusions weekly. I also have experienced every single side effect from rashes; nausea, periods stopping; stomach cramps, mouth ulcers, hair loss (cold cap doing wonders though), and many more. Everyone’s journey is different and reacts differently. Is there any way at all they might let you work from home? Or flexible working from home two days a week and then off sick the 3? I would see what your options are. It’s accumulative so you might do ok to start but then after you might have lingering side effects so you might not be “done” after 3 months
i hope my perspective helps and there’s lots more on here too who are wonderful people helping me also along my journey.

They can also “tune down” the EC @Bangersndmashif you need it. I’m older and had begun to go through menopause (I’m still having the hot flushes on the Letrozole and ribocyclib) but my sister is having a similar but different combo and going through a “crash menopause “ which sounds awful. I’m sorry if you are going through this @FcukBreastCanceror @Bangersndmash

I hope the radio has gone well today @FcukBreastCancer 🤞

I’m sorry about the IVF @Bangersndmash- are you able to do an egg harvest?

hi @watchadewini don’t have bowel so I’m probably not much help to you about treatment plans. I did have weekly paclitaxel for 15 weeks. What I would say about weekly chemo is that it’s debilitating. You maybe don’t even notice that you are getting more tired and run down. I didn’t! I didn’t notice just how exhausted I was until Christmas and I got a break from work and real life. All I’d say is to stay aware of yourself - especially you ladies with younger children or having multiple different treatments.

If you are having treatment over 3 months you are probably going to have infusions every three weeks. So maybe three different types over 3 months? Or chemo then followed up with hormone tablets. I suspect you will be able to work , at least to start with. I would check out what your HR policy is for sick leave. I’m going to try and spread out my sick leave and my annual leave so that I don’t use too much and run out of money. Depends how I go I guess.

I went to see my solicitor today to update my will. I also had a phone call with the oncology nursing team. I need to go into the hospital to have an ECG on Friday but that can be anytime I like so I’ll fit in around dh’s meetings. I’m back on the anti-hormone treatment from yesterday as well. I feel okay except for the lack of sleep and neuropathy in my hands and feet. I’m very worried about the lymphangitis though. I’m on 4mg of steroids but I’m going to try and drop this to 2mg from Friday. We shall see how that goes 🤞

I'm really pleased to hear that you’ve been well @FcukBreastCancer. Please don’t worry about genetics- my sister and I had the tests, mainly because of my niece and also because dh’s mum died of bc when he was 12 so I was worried DS might be one of the few males who get bc. It’s very few who have the BRCA gene and they will tell you if it affects you or your loved ones.

@watchadewin ( Third round of BC for me)
I was fortunate to have not worked through FEC that was six three weekly sessions and I really really couldn’t have and didn’t want to either. When I was well I spent time with my kids.

2nd time was 18 weekly taxols ( well 17 cos bloods too low.) I think I could have dragged myself to work in beginning ( no wfh then as was before covid) but also had a stronger dose of another chemo ( ec I think) every three weeks and I just couldn’t have worked with that tbh.

I’ve had loads of radiotherapy ( 35 on each side at the time) it was much much easier than chemo, a doddle !! but I’m aware it’s different for some people and worse if they have it on more sensitive organs

I also had the crash menopause. Yep the hot sweats ain’t nice at all. My periods came back a while after treatment ended ( yes seriously!!) so I was actually going through menopause again at 50 when I had chemo again which knocked them on the head completely. The first menopause was much harder than the second

@FcukBreastCancer honestly if you can have time off and you want to ,don’t feel a fraud and just do it . Life’s too short in any case if you’re happy and can manage Id say just do it. if there is a gene ( touch wood) your girls will be forwarned. I’m doing it again too .I haven’t got the BRCA but new genes are found over time and it helps science too ( I think)
@Ventress I hope there’s some way of working it out so you can have the all the time you need off and not loose too much money. I suppose you’ve already though of any critical illness you may have on mortgage ? I’m not sure how it works in uk but that helped us my first time around.I ‘m so sorry about the lymphangitus ( sp) and understand but am so sorry you are worrying about it. I had never heard of it before at all. Your doctor and care sounds great though and thankfully seem to be keeping a good eye on you.
@Bangersndmash and everyone else sending best wishes 😊

@Nonamelass and @Ventress thank you so much for your replies. I'm hearing that some non contact work may be possible at the start of treatment, but I'm likely to feel progressively worse as it goes on. I'm already through the menopause so thankfully that shouldn't be an issue and the kids are grown up.

@Nonamelass is that the third time of bowel cancer (BC) for you??? Was it the same one returning? Whatever it was, God, cancer is SUCH a fucker.

Gosh no sorry @watchadewin it’s breast cancer . My breasts take it turns. Started at 35 then different one in the other tit at 50 now at 59 its back in the first one. It could have been alot worse . I’m very greatful to still be here tbh. But yeah it’s a big bag of shit xx

@watchadewin no contact work sounds good and not all chemos are so harsh I think especially now. You may feel ok, but ime you do get tired as the effects are a bit cumulative. It really depends on individual treatments and how you yourself react though so I’d defo go in with an open mind 😉

@Bangersndmashlike you the treatment seems to have sent me into perimenopause - we now play the fun game with symptoms of "Cancer or Menopause" everyone's a loser!
My treatment was just 6 weeks but I had a period mid treatment, that felt like a serious fuck you, seriously what sort of higher being thinks that is acceptable?!

@Ventressi did buy some jeans, but there wasn't much choice on account of me being 4ft 11! Ive lost quite a bit of weight over the last few months zoom wary to buy anything expensive incase I gain the weight back so stuck to good old Tesco for my jeans fix.

Sorry to see so many new faces, but welcome, I wonder if I'm a little bit of a fraud still being here as my treatment has stopped and I'm waiting for the swelling to go down enough for them to scan and confirm if the cancer is gone. Hopefully I'll know more in February 🤞