Yes, we do have to count our blessings even with our diagnosis, sadly there are many people worse off!
Sissy, I had no problems during the injections but the aces and pains showed up the day after the last injection. I had a sofa day, took some paracetamol and had a hot water bottle, too. The next day and after that the aches had gone and didn’t come back.
Im feeling better than yesterday but trying to be sensible and rest enough. The munchies and cravings are still plaguing me as well as aversions to various smells! Dry mouth and thirst has me drinking a litre of water each night which, along with the potty trips, are disturbing my sleep quite a lot!
My cancer is ER+ so it will be tamoxifen for me too, so your experiences once you start will be very interesting Gillian! My onc. Was saying it would probably be 10 years, as the thinking is turning to this giving more protection, my BCN said the feeling is too many ladies are having a recurrence at about 7 years or so.
I live in Kent, about 20 minutes drive from Canterbury.
I was told the same thing about the hormone treatment I’ll be having after chemo (started on Monday!) and radiotherapy. They said it would most likely be 7 years instead on the 5 it used to be and they expect that to be extended to 10 years. I’m not sure which one I’ll be put on. I think I may be through the menapause, as my periods stopped completely about 18 months ago although I’ve had very few menapausal symptoms (something to be thankful for!) I gather that they’ll give be a blood test to decide.
Take care everyone - I ofton drop in on you guys to see how you are getting on xxx
Sounds similar to what I was told, probably start with tamoxifen and change after about 7 years to something else (can’t remember what the name was!) as I would be through the menopause by then.
The research continues and they are adjusting their treatments accordingly, it’s reassuring that they are working away and developing the best best possible ways forward to tackle this horrible disease!
Maybe when we’ve been through chemo and then radiotherapy, we’ll have forgotten what feeling normal is like and cope brilliantly with the next set!! (Here’s hoping anyway! xxx
I have had three cycles of the bone marrow injection and each time had bone pain for one day following the last injection, controlable with paracetamol. First time was in A & E as the bone pain (throbbing pain rather than aches in my case} was in my ribs and sternum, and they thought it was a pulminary embolism, but turned out to be from injections. Pains have been in different parts of the body each time (neck, lower back and ribs etc as above so far) Had my first T on wednesday, and no real side effects yet except complete loss of taste. I was on Letrozole pre chemo to shrink lump, but had to stop during chemo as they think it may affect potency of the chemo drugs. Think I go back on it after chemo, or after rads. That is the next question for my onc! Have had quite a bad time on the administration and procedures side (they didn’t put me on the list twice, only putting it right when I asked how much longer I had to wait after waiting 3 1/2 first time and 1 1/2 hours 2nd time (first time they had the wrong medical information passed on by admin staff!), referrals to DN not getting through so no one turned up to give me injections (happened twice so now have been taught to self administer. Not nice or easy but at least I get the meds!) and wrong diagnosis on Onc report (said I had bi-lateral breast cancer when I have medial breast cancer in right breast only), which was after I had had a scan but before I got the results from it, so mind turned to worst case scenario. Turned out to be a mistake in the report and scan had no bad results, and now back to original diagnosis. However I am now onto 4th complaint to the hospital, hoping that procedures that work will be put in place for other patients. Luckily I have had very few side effects from chemo, just raised stress levels from hospital errors. Hope you are all doing well
Lizzy_bcc it isn’t illegal. You can get it on Amazon.co.uk. You couldn’t do that if the oil was illegal. There nothing illegal about it just so you can get the facts straight.
I have terrible aches all across my back and hips from the accrofil injections too. At least you know they are working. Always seem to catch a cold though.
Feeling fed up today with a sore throat from a cough and bunged up nose so breathed through mouth all night. Gotta just love all this haven’t you. Hope eveyone else is feeling ok today.
Hug Vicky
Thank you Anna, Lizzy and the team. Apology accepted. It is such a little known product as it is still quite new.
I am interested in knowing peoples opinions on this new product. I have myself done a lot of research into it. Although there is limited offical medical evidence there are a lot of testimonials that have been posted online. There was recently a case in America about a 2 year old child who was terminal who had been taking it alongside life prolonging chemo and appears to actually be getting better. I have read many a testimonial that say the same, terminal cancer and cured.
I have found out where the purest of these products can be bought from and myself have a bottle. I have been taking it since I had my operation back in October.
I believe myself that it helps. I must warn you though it doesn’t taste nice but then medicine usually doesn’t!
If anyone wants to read some information about it then CBD brothers website has a lot of useful information on it as well as some testimonials.
It can’t do you any harm so figured anything is worth a try. Just wish I knew about it when my mum was terminal. 11 years ago this april we lost her, 8 months after she was diagnosed. She was just turned 49 in the January. I was 24, my eldest was 14 months. Luckily she was there when he was born and they knew each other. She would have tried it.
Thinking of you Nadz. I was still rotten day 7 this last time. Felt bit better by day 9 after kicking my sleeping pattern back into touch. Hope you feel better soon xx
How are you doing Tina? I’m off out for a meal tonight and a night on the tiles with Leo. Have a rare day I feel up to it and the kids are at their dads! Time for a catch up with some kent friends.
How is everyone else? My next dreaded chemo is next friday 29th. Trying to keep my mind of it. Hoping the side effects get sorted that the steroids were giving me and that they don’t last longer again this time. Hate being off work and home on my own. Too much time with my own thoughts.
Thanks Tina. I only run if someone is chasing me or taken away my glass of something nice too! ?
I have booked onto the look good feel better herebin feb too although I am not sure if I can really go due to work. I am considering saying I have an appointment which technically is true as it is something to help the emotional/mental state isn’t it. The therapist and bcn suggested I book on. Just a shame they are always in the middle of the day. ?
I feel for you on your own after the chemo. Is there not a friend who could come and sit with you? I would be so scared to do it on my own. My temperature dips almost to dangerously low each time. Was 35.4 last time. 35 and you have mild hypothermia so I am really pleased Leo is with me.
Hugs xx
Hi! Wow. That was horrible. Woke up this morning feeling better, more me. Such a relief. I wasn’t completely alone this week, my mum flew over to help out while partner is deployed. But it was a nightmare, feel for her as I’m not easy and I’m sure looking after your daughter is not fun, especially when I’m all ocd about the house. There was no routine at all, and I was completely out of it the whole time. This has taken longer to get over than I had expected and it was harder.
Also missed company, yes my mum was here, but she would leave me alone and she isn’t tactile. Missed having someone to hug when needed, or even to just fall asleep on.
Also last night it really hit me that our dreams of having children won’t be happening if I want to avoid any chance of a reoccurrence.who would have thought the early 30s would have brought so much crap.
Anyway glad to see you are all getting through it.
Where do you take your temperatures? I started with mouth but got worried about repeated trauma resulting in an ulcers, so have moved to the armpit.
Has anyone else had family have ago about what you are eating? I’m a plus size lady, and being told off for eating my cravings, is getting to me. I have tried to explain that I have to eat what I can and refusing the crave makes it nausea feel worse. But it’s all you should be eating healthier etc etc. The thing is, I’m not refusing food, I’ve made it clear that it’s important I have a nutritious 3 meals, even though I don’t feel like eating I will do, and always feel better. But with the cravings, I’m seriously only having 2 shortbread a day and a mini snickers. I even crave fruit.
Fair play to you ladies managing to exercise! I am completely bed ridden after chemo. Can manage it to the sofa but that’s it! Once I start feeling better I go for walks and do a dvd but that’s the last week only!
Thanks Gillian… Can’t wait to see the back of FEC next week! My daughter is a student midwife loving every minute of it! Xxx so proud
Good to hear you’re out and about and about your hair!!! Yay!!! Xxxx Tina
Oh my gpd that was a late one. We didn’t get home to bed until 1am! Not done that in ages. Was so good to have a catch up with friends.
Yes Tina I went back to work properly. I am allowed to do what I want with work, but so far have managed to get in for the whole day when going back on. Possibly wouldn’t have got through the whole day on that last Friday I went back if it wasn’t for putting up displays in the afternoon. They are extremely flexible for me. If I went in and felt bad I can just go. If I wake up feeling rubbish after saying I am going in I can call again and say not going. Work are being incredibly supportive. They have the emergency procedures up in the office just in case. Can’t fault them. Constantly asking if the work load for afternoon interventions is ok and not too much for me etc. They have all been great.
Looking forward to last fec being out the way on Friday but dreading it in case se’s worse again. Especially the temperature dipping down. That scares me. Don’t want hypothermia. Hoping t isn’t as bad but scared it might be worse too. So many mixed emotions right now anyway but trying to wedding plan on top of that too. Trying to find a venue we like and can afford.
It’s all going on! Lol
Sorry some ladies feeling so rubbish. Hope you pick up soon.
Higs xxx
Tina you have to do what you have to do. I think the only reason they haven’t advised me not to go in is because I have two kids anyway and Leo also works in a school so he could being germs back, that me going in does doesn’t increase the risk any more. I think I am better for going into work as it gives me something to focus on and get my butt out of bed for. Yeah I get very tired after the first few days back, maybe I push myself to go back slightly to early but I do feel it helps me. I have had 2 possible colds after each chemo session but I am ok and it hasn’t affected bloodwork.
Don’t let this make you stay in. Be strong and go out. My hair has thinned so so much. I can notice it but by changing the way I do my hair noone else has noticed. I even got asked the other day if I had actually lost any hair. Even Leo’s mum can’t tell and I see her lots. People don’t really take that much notice. Don’t let it stop you seeing people. You have to have PMA to get through this. Thats Positive Mental Attitude! Go for it and do what you want to do Tina xxxx
Yes marina, started on 30dec, but had to miss next chemo as had a very bad cold and sinus trouble, so as I’m a very young 74, doctor said bit risky, so next the second one, is Wednesday 27 Jan. Was sick last night as ate a curry, so best avoid that. Started eating it as I had forgotten to avoid spicy foods! Take care we will all get through this. X
xxx