Oh Shocked, that does suck (as does cancer)! I hope you managed to get your money back so you can book to go another time?
Rosie, I’ve had sleep problems but sleeping pills help for me. I’m wondering if it’s worry that keeps waking you? Have you been offered counselling?
Geez Starfire, I certainly don’t envy you! You’re making my experiences seem like a walk in the park! I think some people do only have 4 rounds? I think Shi’s suggestion to ring the BCCF helpline is a good one, I’m sure they’ve had more experience of this sort of thing so should be able to advise? It’s way over my head anyway, good thing we’ve got this life raft to cling on to!
Hi shocked good luck Tuesday I was bombarded with the radiotherapy talk this week too though they did reassure me that they can be very specific around the organs and measure and target very specifically as mine is left side being targeted chest wall and collar bone but not axilla strangely as I’ve had total mastectomy and axillary clearance and apparently make lyphoedema worse there cos of clearance. They do make it sound scary with all the possible complications I know it’s worrying but I just focus that I’d rather they zap it and it not gone back try not to look too long at negative though it’s so easy to run off on it. I do find the mindfulness overwhelmed and relation app on here helpful for when over whelmed.
Aliand I was told regular paracetamol and ibuprofen from day after t and myalgia can last 5 or 6 days needing rest so keep taking. I was also given reducing dexamethasone s for this after the 3 days high strength to reduce bloating and myalgia if needed .I believe just take all you can to prevent feeling the worst. Had t yesterday 1st one not too bad so far just shakey and achey and bloated.oh yes knackered after no sleep on high dose steroids pre chemo so glad I got sleep last night.
Sorry lost thread name but I did find deep breathing relaxation helpful when can’t sleep after I’ve had a cup of peppermint tea and read my book to unwind back to sleep…not always though sympathise as gets you so out of it when no sleep at night then sleep in day then bad cycle…but it’s usually a phase and gets better again eventually.i resort to a mirtazepine on top of my usual duloxetine anti depressants as a one off ad hoc to finally get a nights sleep but as you say knocks you out a day bit usually does you good to get out of the cycle x
Ooh the thrills of it all.
Poor starfire what a time you having you definitely need to get some back up support and advice …you will get there eventually I’m sure. We are tough women just remember that and will get through these difficult times ! Sending big hugs to you and anyone else I’ve missed thread on xxx
Hi thought I’d posted a long thread rattling off but don’t think it posted! So hope this isnt repated.So from what I can remember…
Aliand and shocked on first t yesterday…i.just shiver shake bloated and achey so far but been taking regular ibuprofen and paracetamol as advised as continues for 5 or 6 days been told and think you’re better taking them all regularly to save having to go on the stronger cocodamol 're constipation though personally I’m looking forward to potential diarrhoea instead of the usual constipation! Watch this space…i also got given reducing dexamethasone after the 3 day high dose for few days if need it for the muscle pains neuropathy and bloating perhaps worth ask for that too for reducing side effects next time??
Shocked and Rosie I was mind blown on side effects of radiotherapy talk too but having digested it I’ve decided I’d rather be zapped and know I’m clear and was reassured they are very targeted at the x ray so as not to zap where shouldn’t e.g the heart etc. I too am having chest wall and collar bone but not axilla as had axillary clearance with mastectomy (im47). I think they prepare for worst scenario but not necessarily going to get all side effects and targeted…so keeping it positive and trying not to worry about what might not happen! I found the overwhelmed mindfulness app good at bringing me back a bit when completely stressed out.
Think I’m on my hyper positive steroid buzz…before the dip…
As for sleep issues we all have …like the sound of audio thanks. I usually resort to peppermint tea book then relaxation deep breathing…til those eyes pop open again though I do keep reserve mirtazepine for taking ad hoc to zonk me out for 24 hours if needed as refreshes me after that.already on antidepressant but it tops it up! Take what you need to get through this that s my motto.and remember this is a phase we are strong women and will keep fighting and get through this!
Sorry to hear about your dillemas starfire big hugs to you and all with treatment issues…its bad enough without having to make decisions as Well! Again big hugs to all as we all need them xxx
Hi shocked I know surgeons and onc are so disconnected I agree. Is pd physical disability? I suppose that does complicate things . It needs to be individually assessed for each person but the hardest bit is being given a an option as the decision rests on you then and I suppose we will never really know which way is best and only have hindsight afterwards.perhaps you could have a further chat at your radiotherapy planning appointment to discuss the risks xx
Ps I seem to of stopped losing hair after second Dec and possibly some fluff before this t still got eyebrows and lashes but thinning x
How frustrating for you shocked…definately get pd team on board to try and do a joint meeting with your concerns. Got to speak up for sure good luck but sooner the better…how stressful for you xx
Shocked do you have a breast care nurse ? Maybe she could loads with the oarkinsins team for you and get them to talk to the oncologist. It’s really bad that they are not talking to one another. Your care needs a bit more careful handling than the rest of us.
I’ve still got eyebrows and lashes too after 4 EC they are thinner but still visible. I shaved my head last weekend to go out bald and it’s regrown a bit. As does my leg hair.
Apart from not sleeping my golden 3rd week has been great. Now it’s sunday the impending doom of chemo Wednesday is looming and my first T
Hi shocked i agree with aliand I think I’d definitely get your previous breast care nurse at chester to look at it all as they should be able to liaise and I’m sure you will still be under their care despite the other treatment centres.
Keep on the raft ladies if swimming difficult at the moment…might get up and look out at the sun in a but before the day has passed me by day 3 t xx
Go for it moo moo it’s a lovely day. Just find somewhere comfy to lie and see the sun. It’s good for your soul !
Shocked if the breast care nurse is the wrong one, she will no doubt know the right one. Nurses are much more understanding and have more time for these sorts of issues xxx
I don’t think I’ve had any hair regrowth on my head yet, and I have none on my legs or underarms - it makes showering quick, I always think “this must be what it’s like being a bloke, no shaving or hair washing just in, body wash and out!” I’ve lost a few bottom lashes and my brows have really thinned out so I’ve started using my brow pomade on them.
I’ve also got 1st T on Tuesday. When I go tomorrow for bloods I am going to talk to the chemo nurses about only being given the IV steroids see what they say.
Should I be worried that I haven’t lost all my body hair after 3 fec ? My Arms are still really hairy . My legs still need a shave and my foof is still the same ??? I think my hair is growing back on my head too ?? Does this mean that it’s not working ? I may ask onc on Thursday , I’m a very hairy person and I did have number 1 and 3 at reduced dosage x
I think I’d just be pleased about the lack of hair loss Jamesy although I think everyone’s just so different with effects I’m still pretty hairy on legs and arms too after 3 fec not sure if does all go anyhow shame it’s never from where you want to lose it!
xxx
I know moo moo I was devastated about my head hair although tbh I couldn’t care less now , but I was looking forward to smooth legs !! Flippin chemo doesn’t cut is a break does it xx I’m going to be watching closely all you T starters , in starting to get really worried about it , like having the first fec all over again , just the unknown x
Jamsey I’ve had 4 EC still got hairstyles arms. Shaved legs a few times though they are thinner. The food is weird thin hair at front nine underneath ?!? I would t worry that it’s not working. We are all just different x
Shocked, you are assigned a breast care nurse from the moment you are diagnosed and you can ring the number for your breast care unit to speak to her, if she is not available one of the other breast care nurses in the team should be able to discuss any questions with you ??fec left most of us with arm, leg eyelash and brows jamsey and a Hollywood landing strip ???the t saw off the brows, lashes and remaining foof hair, so don’t think it’s not been working darling ?? ladies the ???are just st like going for a quick 5 minutes on a Sunbed honestly, you just need to ensure you drink fluids, keep area creamed regularly, no bra, you just have to let the air get to things as much as possible or wear vest under clothing, ladybowler tip was M&S vest, Mrs meow tip was silk square to go over zapped area under vest, also H&M do a decent vest too. Creams that people have slapped on are e45, Aveno, aloe Vera, aloe Vera with tea tree, moo goo also pace yourselves when in rads to avoid fatigue, but please trust me it’s really ok??another tip was to keep doing post op exercises too during rads, helps keep movement in arm good. Hope this helps my amazing swimmers, but I’ve visions of you doing the Hawaii 5 0 opening raft scene from the 70’s as you are all ???and will slap the chemo with those paddles if it doesn’t start behaving ???shi xx
Good luck with your first t on Tuesday Shocked, hope all goes well, mine is Thursday. Sorry to hear you have Parkinsons as well, what alot to deal with. Hope you get some answers. Jamesy, I’ve had 3 fec and still got hairy arms and legs too. Lost alot from eyebrow and foof though, in fact foof was the first to go before my head even. X
shocked I know how you feel about consultants not speaking to each other. My new oncologist appears to know nothing about my type of LGMD as I am apparently one of 1000 in the world as it’s so rare. I have kept updating my consultant about what’s going on with chemo but the message I receive is that she dose t understand cancer treatments. Although saying that she did advise that I wasn’t to have FEC as it is cardio toxic and dangerous for people with Muscular Dystrophy.
To all ladies starting T this week I wish you all the very best xxx
Hi ladies.
Sorry I’ve been offline this week. Looks like you’ve all been busy.
Had the worst chemo week yet (TCH cycle 4). Have never been so low in my life! Fatigue has hit hard this week and spent all day weds and Thurs in bed. Oral thrush back again too making everything taste horrid.
Beginning of the week me and the hubby had a discussion and decided to put everything aside and get me through the remaining 2 cycles. Once I’m done we will see where we are at relationship wise.
On a positive, it was my daughters 7th birthday on Saturday and I managed to make it out of bed and enjoy the day with her. She said it was the best present ever…made me cry bless her.
So yeah lots of tears this week. Really struggling and worried I don’t have enough steam left in the tank to do 2 more cycles… Will have to see what happens.
Just keep swimming… feeling like this is only temporary.
