Great news Rosie and Amy. Thanks so much Shi for all your support, couldn't always work out what your signs meant, but your posts were great.
Still not got my taste back completely think it was the antibiotics I was given in hospital. Still can't enjoy gin and tonics or red wine.
Start radiotherapy on Monday have a journey of 100 miles each day but have transport arranged. Think I will also join the June Radiotherapy thread.
Last Saturday in September is ok with me.
Whoop whoop whoop...
I’ve kicked off my trainers no second lap for me 😀😀😀. Oncologist wants to go down the endocrine route with ovary suppression and a different drug to Tamoxifen but I was too happy about the no more chemo bit to remember what she said. She also said if I hadn’t of had the double mx she would have suggested having the other breast removed anyway as my cancer being Lobular is hard to detect!! Rads planning next week and seeing oncologist again the week after when she has the results of my hormone levels back....
i am so relieved....I know that the chemo not working makes my prognosis less favourable but I think once we’ve had this disease we are all living with the lottery of reoccurrence so time to crack on with getting stronger and back to some sort of normal....
The big meet up...shall I start with the last Saturday in September? Any other offers?
Shi I just wanted to follow up on what Shocked said...you have been an absolute star...so so kind and supportive...never underestimate how much difference you’ve made xxx
Great news Amy I’ve joined the June rads thread so I might see you guys over there. Hope the SE stay away Shocked and good luck once again for the Rosie.
I AM WOMAN HEAR ME ROOAAARRRR. 🤪💪🤪💪🤪💪🤪💪
Shi - thank you sooooo much for being there for us all and keeping us going through this rollercoaster of a ride - you are such an amazing positive lady and always have advice to point us in the right direction xxxx
Aliand - I am up for literally anything when we meet up - Rosie once you know your plan let’s get a date firmed up.
Feeling positive today - day 3 of Tamoxifen and still no real side effects (apart from the hot flushes I was already getting) hope it stays that way. Just need some hair now 😜
Phew...spry ladies been busy packing all the deck chairs away from the finish line. That’s amazing news Amy what a treat 😀...
Aliand I like your thinking but I think when we get together there will be far too much talking going on!!!....
So I’m all armed with my list of questions, so much more prepared now than ever before...it’s time I stepped up a bit and stopped just going with everything they say. Will update you tomorrow...sleep well lovely ladies xxx
Yay, so I was the last chemo finisher in the end.
So we are all chemo complete with the exception of Rosie who is getting extra tablet chemo and is going to be group Superwoman.
I've been feeling good so have done far too much and am totally fagged out !
Oncologist tomorrow, I dont know what for but I hope she doesnt say anything horrid as I'm on my own!
Lying on sun lounger G&T in hand served by Poldark who is now fanning me with long egyption like grass while Coldplay are playing live on the beachfront.
Hey when we meet up maybe we should do it in a spa, groupon do great offers we could try and bag, although I suppose it depends on when as I might still be in radio - might not be a good thought, also dont want to cost anyone a load of monety theyve not got, maybe scrap thatthinking out loud idea
Rosie - just to say good luck with your Onc appt tomorrow and getting your new plan in place - let us know how you get on xxxx
Thanks Shocked and Jamesy, I will take note of that for future reference!
So it would seem my big girl pants are not required! Saw onc today and I told her about my numb finger tips and she said that she can't guarantee it won't get worse and might be permanent and how did I feel about that, so I said that technically the next chemo they've prescribed is an extra one, so she had a look on her computer and said "so it is, well let's cancel it". Woop woop, so that means I'm finished chemo!! Can you beach dwellers please get some fizz on ice, I'm just floating to shore 😄
Rosie, not been to Canada before. Going to visit my son, who emigrated there last year, the week before I was diagnosed. He has settled well and seems to really love it. I sooooo don’t do skiing so no need for tears!!
good luck for tomorrow at the onc xx.
Dealdoh...Canada!! One of my favourite countries in the world. If you say you are also skiing while you are there I may just 😭 cry....
My legs ache loads and loads since chemo. Usually around my shins but all joints are fairly shot to bits!!
The last comment she read out on that cancer thing was mine...it’s crazy isn’t it, these disease is rife yet if it wasn’t for this forum we’d feel so alone. You look around when you’re out and about and everyone else looks fine!! Yet there are so many people battling for their treatment and health.
Thank goodness you remembered to ask...Shocked where did you get the insurance? Our trip is booked for the end of October and I haven’t sorted anything yet!!! X
I’m having fifteen sessions of radiotherapy, two down now. The sessions don’t take long, with most of it being taken up by the lovely staff getting you into the right position with the actual zapping only taking a couple of minutes. I found it a little uncomfortable having my arms positioned over my head in the first session but took a couple of paracetamol before today’s session and all was fine. No adverse effects as yet - long may that continue.
I have been getting some joint pain, which actually wakes me at night but this started before the radiotherapy and anastrazole and I am not really sure what is causing it. My legs sometimes feel as if they don’t belong to me as well. Just putting it down to the ongoing delights of chemo. Lost another nail today.
My hair is starting to sprout; mostly at the sides at the moment. Not quite sure whether I am going to have to shave this so the other areas can catch up.
I terrified myself reading about all the dire side effects of anastrazole but decided to cling on to the comments of a couple of women that said that people will usually only post if they are having a problem and not if everything is going ok and that there must be thousands of women out there who are doing ok on these drugs.
I listened to the Jeremy Vine show Rosie - it’s a truly horrible situation. On one hand there is what appears to be an effective drug that has been licensed for use by NICE subject to certain criteria but on the other hand people are having to meet additional onerous criteria laid down by the NHS in order to be able to access it, for what appears to be financial reasons. As we all know, the NHS does not have unlimited resources and someone there has to decide where the money goes. I wouldn’t want to be that person or those people but I know that I would be fighting to have that drug if me or mine met the NICE guidelines.
Amyjb - put your big girl knickers on for the final round and remember it will soon be over. 💪💪💪💪
And finally on this epic post, Shocked where did you go to get your insurance? We are trying to organise a trip to Canada later this and are having a few problems. A couple of companies won’t quote me until I have finish d the roads and the only quote I have at the moment is £450.00 😖
Hi Shocked...I see them Friday. I’ve reverted to crazy reading since the proverbial rug was pulled out from under me. Apparently hormone positive for both Estreogen (can’t ever spell) and Progesterone are a good thing. There’s evidence that suggests that the Pr blocks the action of the Es to an extent slowing down the growth of the tumour. I can’t believe I’m back at the waiting for a plan again phase!!!
Amy that’s lovely news that you’re finished next week 😀...it can be quite emotional and a tough week but when you turn that SE corner you’ll be so so happy and relieved.
Jamesy that’s great news too...
Did anyone listen to the Jeremy Vine show today? Xxx
Another step closer Jamesy and another target date to end your rads 🙂 when do you go on your hols??
Finally got a sensible insurance quote today just under £200 for annual family policy inc USA which isn't much more than what I paid last year so happy with that considering its covering all my many ailments :).
Amy yes time seemed to slow down since last October (when I git diagnosed) - funny how when your having fun it flies but when your having chemo it virtually stops.
I bought the lush red dot when we switched to T so have that but will also order the castor oil as well - I'll give anything a go now - I am not rocking the bald with little white spiky bits look 😄
Rosie - yes it was hormone positive, I'm trying to stay away from reading too much and just see what comes after scaring myself silly reading the side effects of Tamoxifen. The only side effects my Onc mentioned for the Tamoxifen was hot flushes and weight gain JOY. He described the Zoladex as a step up in treatment if needed. When do you see your Onc is it this week? - you'll soon have your plan in place
Nice one Dealdoh, how many rads sessions do you have to do? I hope you don't get any awful SE's from the Anastrazole.
Thanks Starfire, yeah it's more than twice the price on eBay! I think I'll get some of the castor oil instead.
I'm desperate for a bit of coverage as I've started getting hot flushes (yay another gift) and wearing a hat makes it worse
I should really be exercising but don't get much time. I've got a wedding to go to in July and I don't really want to be larger than normal AND bald 😐
My nails are a bit discoloured and there is a strange ridge on one of my thumb nails quite close to the nail bed so must be recent, maybe from the Abraxane - Starfire, did it affect your nails?
Rosie, that's a good attitude to have. It is funny how we have to be grateful for being put through this hell 🤔
Yes Shocked, yay! This time next week I'll be done. Wow, hasn't time flown...NOT!!!
Shocked I’ve been reading loads about Zoladex and Tamoxifen as well. I take it you were hormone positive? Loads of woman on the American sites talk about ovary suppression!! I’m so desperate to start my Tamoxifen but not allowed until I’ve seen the Onco on Friday. Just want to be doing something!!
Dealdoh what was the Radiotherapy like?
Aliand my hairs like weeds, I’ve spent as much time as I can outside because I’m absolutely convinced that helps...mind you all other hair has now sprouted including those lovely 40 something face hairs. How long before your surgery?
Michelle I got the oil after chemo, not for any other reason but I’d finished when I heard about it!! Xx
Aliand - you've just reminded me to get my fitbit back out to count the steps (hid it as I didn't want to know whilst on chemo - something telling me to get off my backside was not what I wanted to see). I've been walking 3 times a day this week but flipping heck I'm shattered all of the time and everywhere aches I'm just so unfit now.
Jamesy hope you start to feel better very soon.
Amy - not long now until your last session
Right back to changing addresses on everything - didn't realise how much effort this moving house lark would be!!
Dealdoh - hope your first rads session went OK and the first anastrazole.
I started Tamoxifen last night first of 10 years worth 🙂 Been told I may need monthly Zoladex (think thats right) injections as well but they are just going to start me with the Tamoxifen and if my periods return then its on to Zoladex as well.
Cancer+chemo = the gifts that just keep giving 🤪
Started radiotherapy today plus ttook my first dose of anastrazole. Ho hum.
The red dot Lush shampoo is on eBay but more expensive. I bought off eBay as needs must x Hair just starting to come through after finishing chemo 7 weeks ago. Eye brows and eye lashes sprouting faster xx
Hi Jamsey...here’s the link
Michelle my eyebrows left me after my second FEC. I had T first lost loads after the first and then it grew after the second. It was the FEC that had the biggest effect.
The oil is nice because my scalp was a bit sore and crusty too...unfortunately if I have more chemo it may well thin or stop growing again!! Although being alive is probably more appealing than hair right now...x
Michelle my eyebrows started to go properly on round 4 (I could get away without the pencil before that even though they were thinning) then eyelashes round 5 but I was 3x FEC 1x T then 2 x FEC.
Dealdoh they look sore even if they aren’t I bet it’s hard to open cans etc - that’s what I’ve been struggling with. And I can visibly see them rising out of the nail bed so it’s a matter of time - when you start chemo all you can think about is your hair but as you go along there is such an assortment of unpleasant side effects.
Oh Dealdoh they look sore...
Toptip if you can’t get your RedDot stuff. Jamaican Black Castor oil. Got mine off Amazon and lather my hair and eyebrows in it every night...
Remember I never went completely bald all over just in patches and I only shaved to number four but I swear this stuff is working...
Sadly, despite trying to protect my nails, they are well and truly ruined as you can see
I have lost the thumb nail on my right hand. It wasn’t as bad as I thought it would be but I did cover it with tubigauze to stop it catching on stuff. When the time came, it came off without any pain. I anticipate losing at least five more of my nails. They look worse than they feel but I do struggle with doings things that need nails!