Blimey lots going on since I last checked in!!
Daisy first. I'm glad to hear that your itchy symptoms seem to be clearing up. Nothing worse than an itch!!!
Marlyn I'm super confused as to why your elbow "sticking out" stopped the rads? Did they explain? When do you get to try again? You have to be re-tattooed? Sounds like the whole palaver put a total stink on your day :/
Did the temp and BP only shoot up when you had the herceptin? Could it be a reaction? (Ah you already answered no to that theory further up thread) All very stressful for you glad they have let you go home!!!
Being in a hot hospital definitely doesn't help temp! When I was desperately trying to escape hospital the other week the room I was in was BOILING like a sauna. They would come in and check my temp and it was too high. Then I asked to go and stand in the much cooler corridor for 5 mins and they checked again and it had gone right down....
Sonia- believe it or not there was one new receptionist at the GP today who was all smiles and the usual one who is usually a right old grump was also super nice for once. The new woman must be a good role model they sorted me out the form in 2 seconds flat and said it will be done within a week.... that was easy!
MBJ recording with/for Madness!!! How exciting!! My big sister lived in Camden back in the 80s and often saw them in her local pub. She was quite friendly with Suggs. Got me some free records and promotional swag which I was super chuffed with when I was in my early teens....
Seaside a long stressy day for you too I also mentioned a theatre cap to my nurses the last time I cold capped as by that point I was near enough totally bald on top, but they didn't know what I was on about either. They just slapped the cold cap straight on and it was super uncomfortable.
Susie lovely flower photos, thank you!
Rosina you really are an inspiration. All I seem to crave throughout chemo is carbs and cheese. Cheese toasties. Macaroni cheese. Pizzas. Ritz biscuits with cheese. Cheese and onion sausage rolls. You get the picture!!! No wonder I'm piling it on!!! But nothing else tastes right or takes the edge off my mild but still ever present nausea..... oh and I start and end the day with fruit salad so that is better.
I am having to force myself to eat veg though which is most unlike me. I love my veggies usually!!!
Drinking plenty of water and v weak squash though so at least I am well hydrated.
Been avoiding feta and goats cheese though, I thought they were on the naughty list?
As for me I wanted to get a lot done today as if last cycle is anything to go by, tomorrow I will start to feel pretty Barry..
But I ended up not getting to sleep last night till gone 2am because I took my steroids too late, so had a long lie in. Then I got up and did housework till my son got up and he didn't manage that till 2pm!! Which didn't leave us time to do all I wanted to do in the afternoon before his 4pm jiu jitsu class. So our trip to the local tip got canned. We did manage to visit the GP, pick up a parcel from the sorting office and do a big supermarket shop though, so not too bad.
I'm now out on my daily walk. Not a long one today, 8k steps or so, as I am really starting to flag now.
Saw a cute goose family though:
Next step home and maybe start on a painting I have promised a friend . Or I might just go straight to bed and watch TV
Hope everyone is mainly ok x
Oh dear what a worrying day for so many of my lovelies. I do hope tomorrow is a better one. 🙏🏻. Xxx
That's a day I don't want to repeat! Just got home, they only let me go if I promised to call the helpline if I felt ill.....all I need is a good night sleep...in me own bed....so damn relieved I'm not staying in.....will check in with you beautiful ladies tomorrow......xxxx
catching up on posts.
Marlyn and Seasidesar hope the Hospital visits have sorted. Long day for you both 🥴
Edinbird and Trixielady so sorry to hear that you are not feeling well.
Implausible thanks for asking about the prescription card. I haven’t got one either but I do remember the bc nurse mentioning it re. Tamoxifen although now I am wondering whether it will be Tamoxifen or Anastrazole as I am sure I have been kicked through the menopause and out the other side 🤪 Nettinoo Thanks for telling us it’s a form filling task, I will get on to it.
SusieB thanks for the flower pics ( mock orange smells lovely).
I picked Leith Hill for our walk today ( thinking it is only a short one) H1 drove us there ( had never been before) it was beautiful but the ‘hill’ bit was a challenge and I really had to focus on my breathing , so much so I must have sounded like a cart horse snorting away .
Weight wise , apart from dark chocolate I am off chips and crisps.
Butter is peanut or almond, cheese has to be soft white ( feta, goats , sheep’s) olive oil.
I have been eating plenty of fruit ( went berserk for citrus) and veg. soups especially ( spinach and nutmeg was on tap after each chemotherapy dose.)
For sweet stuff it’s been dates and flame raisins and molasses. No white stuff.
No alcohol, plus walking so so far my weight has been stable.
Plenty of nuts and beans and up to 4 slices of whole grain bread.
No water retention or nail loss either.
Soya milk ( not cows milk).
I eat pasta and potatoes.
I don’t ever feel hungry or deprived.
I ate chicken at the pub when my brother came but I would say I am vegetarian most of the time as last time I had chicken was over a year ago.
I like salmon with scrambled eggs and will eat them when I get a craving for them.
Juncky food is definitely out though.
What a mixed bag of posts at the moment. I can't keep up!
MJB, recording a video for Madness, you lucky thing we love them.
Marlyn, hope things improve soon and you're not having some kind of reaction to the herceptin. Mind you, I think if I was in your situation my BP would be sky high too. All this stuff that's supposed to help us seems designed to make us worse. Someone somewhere must have some kind of warped sense of humour.
Edinbird and Trixielady, hope you're both feeling a bit brighter.
Implausible, I think doctors' receptionists are a breed apart. Be as unhelpful as possible and the job is yours.
Daisydi, glad to know you feel a bit more 'with it' today.
Sonia28, hope you enjoyed your lunch. My own diet will start next Monday. My body is going to accept salads and apples🍎🍏🍅 whether it likes it or not. They're just a couple of things I completely went off during chemo, but surely after 5 weeks I should be back to normal by now?
Hope everyone else I haven't spoken to today is ok. Take care xxxxx
Mjb, that's the puzzling thing....it been a pretty steady 36 ( something) throughout chemo....now it's 37.9 ( nurse just took it again) I'm defo staying here until At least 4 pm.... I'm putting it down to stress over rads this morning....absolutely no sleep last night and a pretty warm chemo unit....xxx
Seaside....sorry your having a time of it too....I've been here since 8am....iPad battery nearly out....oh the joys....hope we're both home soon...really want me jimjams....xx
personally I think it's the palaver of rads ( or no rads) this morning....plus zero sleep last night....I actually feel ok except for feeling knackered! Got appointment Tuesday with nurse to see about my high pressure....may need meds.....hey ho.....xxx
Thanks Daisy and Susie, I will make sure they let me continue for my last session. Not giving up after all this hard work! X
I am sorry I did not see your earlier post. Gosh I hope you will be better soon. Do they think it's a reaction to the Herceptin?
Seaside Sar, I cold capped using a blue theatre cap for my 3rd and 4th chemo sessions as my hair is extremely thin on top - standard practice - and recommended by cold cap company. Best the nurse brushes up on her knowledge.
Seaside get the nurse to ring the cold cap company for advice. She is wrong! This is what happened to my friend and she got on to Paxman but it was then too late as all her hair had fallen out.
Oh Marlyn, souns like you're having a right Barry day!
Mine isn't great either. Been here since 10am only to find my drugs weren't ready. Just got the Herceptin started and cold cap on at 1pm. I'm in for a long day. Also, the nurse reckons my hair is getting too thin on top so I may not be able to cold cap next time. I mentioned wearing a theatre cap but she hadn't heard of that before. Hopefully I'll have a different nurse next time.
Sending big hugs to all you lovely ladies.
Still here.....not only is my blood pressure not coming down my temp is now reading 37.9 !!! Wtf??? Iv been ok throughout chemo.....give me 4 weeks and look what happens.....hope to god I'm not staying in!!! Boo hoo xx
My sister used to be in the Rock Choir MBJ. She absolutely loved it until they changed their choir leader and the times and she just couldnt settle. Well my hair has survived another wash. It is still shedding but it is still there albeit a bit thinner. A memory just came up on Facebook and it was 6 years ago when I bought my campervan. I absolutely loved it but had to sell it when my mum developed dementia and we really couldnt go away and leave her and now I have car phobic dogs so wouldnt be able to do that again but at least I did it!
I am sorry you feel rubbish Trixi and Edinbird, I hope you both have a better day today. Living in Wales we all get free prescriptions and I don't think we realize how lucky we are sometimes. Although I do think that the majority of you have had better care during chemo than me, so maybe the prescription monies could be spent better in Wales who knows?
Off to Rock Choir tonight, don't know if I shared some really exciting news girls. But on Monday we are recording a video for the group MADNESS for their tour. They are playing in Wales in May exciting stuff hey.
Trixlelady, sending you bug hugs, but like you say it helps when the weather is better.
Marliyn, fingers cross your day gets better xx
Susie, I feel like a webble now
Daisydi, I feel your pin with the scabs, I have a lovely few around my neck, im hoping i fair better this time, although I am sporting very rosey cheeks again today.
Pastasmissus, you have made me feel a bit better with the weight gain, It goes on so quickly then take so long to come off, but hey ho with everthing else were going through.
Implausible, you made me smile when you mentionedt he smiley receptionist., they are so joyful.
Well im helping my weight loss NOT today as my daughter is taking em out to lunch
Getting worried about the weight gain caused by steroids whilst on T. I'm only 5ft and currently around 8st 10, well 9st since holiday! I could end up looking like one of those weebles, I think that's what the kids toy was called, that don't fall down😭😭
Well, what a palaver today is turning into. Rads didn't go ahead due to my elbow sticking out?! This is despite being measured and tattooed last week....so got it all to do again at some point....
sat here in chemo unit , had herceptin injection.....blood pressure high and temp high....they are checking me every 15 mins.....gonna be a loooooong day!
To all all my beautiful sisters.....thinking of you....those who have had chemo and those who have it coming up....I love you all xxxx
Morning all yes a friend of mine told me about the exemption certificate otherwise I wouldnt have known. We just got the form from the pharmacy at the GPs filled it in and sent it off and I got a little card in the post. It has saved me an absolute fortune over the last few months with all the lotions and potions I have had to get, even mouthwashes. I am feeling almost human today better make the most of the next few days. I am about to wash my hair. I had a major panic yesterday as my head was really hurting and I was expecting to wake up with no hair this morning as T has thrown everything else at me but it is still there,for now. I got a windscreen chip the other day coming home from the hospital and I may have the energy to sort it out today. My spots and scabs have stopped itching and seem to be calming down. Hope everyone has a decent day x
Trixielady, sending you a cuddle. We are all here with you however long it takes. Lots of love. Xxx
Thank you Pastasmissus. I'll do that today.
I was on track to put on 3 stone too. Exactly half a stone up over each of my first three cycles. Very disapproving looks from the onco nurses at each weigh in!
But I tried harder on this latest cycle and managed to stay the same. Hoping to do the same over this one and #6. Fingers crossed.
The remaining one and a half stone I should be able to shift once treatment is over and I can get back to the gym and the pool. I hope!
I put on 3 stone with chemo :-(
Re exemption from prescriptions - you don't need a doctors appointment, go to the reception and ask for a form. Fill in your bit, then they will get the doctor to fill in their bit and send it off
Good to hear from you Trixielady but sorry you are struggling
It's a case of gritting your teeth, and waiting it out, I guess.
I wonder how many oncologists have actually gone through chemo themselves.... they read all the side effects from a list but I bet they can't really visualise just how rotten it actually feels....
But like I said before, here's hoping we all come out stronger the other side.... I really believe we will x
I'm much the same as you all putting on weight, having more bad days than good ones trying not to fixate but when the weather is so beautiful and finding it difficult to make use of it, concentration not good. Still another 6 chemos to go xx
Thinking about you xxx
Oh that's not so bad. I will pop in and see if I can get a form from the oh so helpful and smiley receptionist
You just need to pick up a form I think or maybe you can apply online. Then a doc or nurse signs and sends it off for you. Well that’s how it works at mine. I’m pretty sure you won’t need an appointment. They will have info about diagnosis that’s all they need. Xx
PS same here too with reading. My books and comics are piling up as the chemo makes my eyes fuzzy
Am listening to podcasts more and also reading on the kindle app on my iPad as I can enlarge that to proper old lady giant type
I applied and have the free prescription charge, it’s saved me a fortune, as I’ve had to get bits from the gp, that have been all all caused by cancer but you get all your prescription free. I’m now getting Eczema shower gel bath stuff and cream to keep my skin from drying out before radiotherapy.
🍀good luck seaside and Marilyn,
sorry Edinbird that your feeling so cra*py today, your a few days ahead of me, so have it all to come. I’m more for warned this time on what to expect so have arranged lifts for the kids all weekend and other half is away.
Trixielady lady hope your okay, haven’t heard much from you.
Nettinoo and MJB. I love audiobooks, they’ve been a god send as haven’t had the concentration level either.
Well I think I’m the winner or rather unluckiest in the weight gain. I’ve put on just over 2 stone, was speaking to nurse yesterday and she said there’s not a lot you can do about it, just don’t worry at this stage( easier said than done) hoping some of it is the swelling in my legs too. I can pray.
Its been lovely to hear all the good news and lovely pictures over the last few days, this Barry won’t knock us ladies down. It will be so lovely to see you all when we get to meet up.
It really does feel like light at the end of the tunnel I know there’s radiotherapy, then hormone and I’ll have my
2 surgeries after that but feel like it will all be a breeze after chemo 💕💕
Hole you all have a lovely day ladies
So I get it from my GP? This exemption thing?
I'd better start the ordeal of attempting to get a non urgent appointment then. 4 to 5 weeks wait at least..... sigh..... I hate trying to get in there!
Glad to know I'm not alone in the inability to concentrate on reading books, I even have problems reading all the posts sometimes☹. Like you, my books are just sat neglected on our book shelf. I only hope my son and husband don't take it personally and think I don't like them.
Sarah, flipping hec girl get yourself sorted with an nhs exemption card. Docs will sort. I had one from 5 years ago when I had my first bc op (felt a bit of a fraud as I only had a lumpectomy and no further treatment the breast care team were adamant though). It was just about to run out when bc returned so the bc nurses sorted out a renewal and it just turned up in the post. I’ve been very glad of it as am now on 2 regular meds from docs and sometimes other things during chemo as sometimes I can’t get to the hospital for a prescription. Who knows what prescriptions we might need in the future? We’ve all earned it and been taxed for it so don’t feel guilty. X
Edinbird, I hope you managed to get car in, rest well now sweetie. Xx
It's great that so many of us now are either finished chemo or approaching the last hurdle. Lots of us with only 1 left to go already or will have after this week. Go us!!!
Feels nice to be on the homeward stretch, of this stage anyway. And this has to be the worst bit, right??? My cousin assures me that rads are a total doddle after chemo, and I'm not worried about the last bit of surgery.
Hormone treatment for 10 years is a little off putting just because 10 years sounds like a lot! But still not as **bleep** as chemo
(Oops I got bleeped )
This ordeal will make us all stronger simply because we can spend the rest of our lives saying "I can get through anything. Because it's not as **bleep** as chemo"
A completely (ish) unrelated question. Have any of you been given or applied for a prescription charge exemption certificate?
I very vaguely recollect someone mentioning them before, but I didn't bother pursuing it because I thought it only related to cancer specific medicines (the steroids, anti sickness meds etc.), and my hospital just hands me a goody bag with all those in at each chemo session, so I don't have to pick them up from the pharmacy or pay for them....
But the lady in the next bed to me said this week that she thinks it covers ALL prescriptions, and lasts for 5 years with the option to extend it to 10.... I currently pay £9 (or however much it is now after the latest price hike) every 28 days prescription charge for my regular high blood pressure pills. So over 5 /10 years that could save me a pretty penny! These are nowt to do with the cancer though.
Does anyone know if these would be covered and how I go about getting one of the exemption certificates if so?
(NB I would feel much more guilty about depriving the NHS of that £9 a month if they hadn't messed me about so much 3 weeks ago!!! I still haven't recovered from those 9.5 hours sitting in pain in the world's most uncomfortable waiting room chair attached to a drip I didn't even need! )
Good luck today Seaside and Marlyn!
Morning guys xx
Again so much has gone on... so glad that Veronica is done with chemo finally and I hope that the job doors swing open now Sandra
So many lovely photos and it seems like plenty of treatment going on to kick Barry squarely up the behind!
I had a busy day yesterday which culminated in a nice relax on besties roof in the sun but kinda went downhill from there...
Last night I barely slept with a really sore toe and nail, big old bruise from climbing in the window funny, a sore throat that has developed into a snot fest and a whole new load of night sweats! Let’s just say I feel rough but I need to get up right now and take the car to the garage for MOT 😕 thankfully it’s at the end of the road but I just want to stay in bed. I even took paracetamol in the night and I never touched it once through T ache last cycle. That’s how much I wanted to sleep and ladies, it hardly worked at all.
So might not hear much from me today if I can snooze on the sofa, and hopefully my old banger passes it’s test... not sure which is more clapped out tbh 😬
Ps. Weightwise during early chemo days my weight dropped to 8 st 11. My normal healthy weight is about 9st 4/9st 5 and I looked awful. I’m now 9st 12 so have a half stone to drop but I’m not bothering too much at the moment as fighting a losing battle with the steroids. I’m just trying to stop snacking on rubbish. Never used to before chemo 🙄 x
Marie, Audible is my new best friend. I find it difficult to concentrate on written books for any length of time at the moment. I’m normally such a book worm and have a backlog of books I was given at Christmas that are still sat there waiting to be read....flipping chemo has had so many unexpected effects. Listening to audio books is great, I still get my fix but with less effort. My husband bought me some super duper, noise cancelling, very lightweight Bose headphones for my 60th. Perfect present at this time. Bless him. I listen to meditation, Yoga Nidra type recordings on them too. I’m so glad to hear you are out and about living life again and having fun and have a holiday to look forward to. Lots of love and hugs. Xxx
Well it's good news everywhere it seems. I am so pleased that Veronica can stop her chemo now Sandra you must be so relieved. I hope you find what you both need in Edinburgh.
You are all moving forward at a great pace now with the end of chemo in sight for lots of you. I am so proud of how strong and determine you all are and just wish I could have remained on the same journey as you all.
I have been out and about a lot this week, lunch three times, then tonight a play in our local Am Dram theater. Oh and Slimming World is not going so good girls well what can I expect if I keep on eating out. But I am determined to loose at least 5,lbs before my cruise in June. I will have to as nothing fits.
Barry BC ruins everything, hair, waistline my brain (full of worry crap). Hope to see more lovely garden photos soon. I will spare you mine as it's like a building site. Off to listen to my audio book now. Isn't Amazon great.
Sonia, how could I have forgotten you? Big hugs my darling for no. 5. Well done. You’ve not had things easy at all have you but the end is in sight now? Xxx
Sonia, how could I have forgotten you? Big hugs my darling for no. 5. Well done. You’ve not had things easy at all have you but the end is in sight now. Xxx
Hope all goes good for you girls tomorrow, Marlyn and Seaside. I’ll be thinking of you. Susie, I have serious Wisteria envy, well whole garden envy. I can’t wait to see your cosy place too. It all sounds so wonderful.
Sandra and Veronica, so happy and relieved for you both. I can’t wait to hear how things pan out for you both. You have survived such a traumatic, awful time with each other’s support and love and a new start is just what you both need. Although, like most of us, there is further, treatment/drug regimes planned for the future, I have no doubt that you both will be able to cope well with whatever comes next. Edinburgh is beautiful and inspiring. Happy times coming my loves. Xx
Sandra, that's fantastic news! So relieved for you both I'm doing a little jig induced by steroids so not pretty but well meant nonetheless. Seriously though, things are looking up and I couldn't be happier for you 😊
Sonia, one more to go. Yippee!! Light at the end of the tunnel.
Lovely garden, Susie. Thank you for sharing. I need some inspiration for mine so keep the photos coming.
Good luck for rads tomorrow, Marlyn. I'll be thinking of you.
Rosina, I loved my bike ride. I went along the trimtrail nearby which runs beside a river with ducks. Very peaceful. Had to make the most of it as I will be far too wobbly after my treatment so will be back to short walks instead.
Sleep well if you can, everyone. Or join the early morning wakers and we can have a chat!