It’s going to take me a while to understand how to use the site again but i will. I couldn’t bear to lose you all. I did post on the temporary site so thank you Lori, Judy and Lynn it was good to hear from you in my moment of panic. My goodness reading some of the ladies posts for August it seems we were very lucky to get the meds we did when we started. Most are having to ask for them and sound like they are suffering for it. Must be down to the cutbacks.
Lori, Pauline and anyone else who has finished chemo for a while, please tell me this rotten taste goes. Ive had it now all the time even since the last Docetaxol. Fingers and toes are numb as is the tip of my tougue and all food now tastes awful. OH wants to take me out for a meal next thursday for my birthday but whats the point. Everything else is just about manageable for now.
Mel can’t believe you’ve started rads already. I feel soooooooo left behind but just as pleased for all moving on at the same time:womanhappy:. Right going to drag my sorry ass (Judy, like you finding it hard to go too far without aches and fatigue) to see my lovely horse Starlight who never fails to cheer me up. Should be better when I get back, promise Angels. Lv & Hugs to you all. Sandy x
Hi Angels
I’ve just got back on here after having problems resetting my password on my phone, seems the password reset has caused a few of you problems too.
I’m now in Weymouth having left Cornwall this morning…I’ve done the driving as unfortunately my OH had an acute attack of Gout in his ankle start on Tuesday so he won’t be driving for a few more days. It does mean he can’t walk too fast for me to keep up with now though!
Welcome to the platform Roz, hope your SE’s are kept to a minimum for your last cycle.
Hope you all have a good weekend and perhaps some sunshine
Kate
X
Arrived early for Rads today and got taken , boost in and out in no time. 5 down 14 to go at least I’ve got the weekend off. Went to Jamie Oliver’s for lunch, one more meal out tomorrow then it’s serious healthy eating!
Iam just over 4 weeks post chemo and have had my taste buds back for nearly 2 weeks, it’s so great to be able to taste food again, can definately relate to the coffee thing had a Starbucks this afternoon mmmm…
Judy , have a picture in my head of your sons bedroom …as long as he is happy that’s all that matters.
Mel how are you getting on with Radiotheraphy?
Still trying to get used to this site, now I can’t remember all the posts. Can we still post and look back at the previous ones?
Anyway, hope everyone has a lovely weekend and s/e are minimal xxxx
Ps. Still got the aching legs any idea how long it lasts, I feel like I’ve aged 10 years!
Hi Sandy dont worry as Amber said the taste comes back - hooray!
On the negative side the aches are lasting ages and I lost my thumb nail today, thankfully I managed to keep it long enough for skinny new nail to grow just over half way underneath!!
Lori x
Hi Debra sorry your feeling low but your doing the right thing carrying on with it. How many more to go or is this last one?
Hang in there kiddo - wish we were all nearer too but we’re thinking about you.
Big hug Lori xx
I had CMF yesterday too Debra- we’re on the same days now. was yours the 1st or 2nd in this cycle? I’ve got disgusting mouth already and co-ordination is shot to pieces- keep bumping into walls and missing my mouth. have you got difflam and gelclair? start using them straight away as it’s supposed to be preventative as well. i got tablets for oral thrush this time as well, and was told to start taking them as a preventative measure too, before it kicks in. I haven’t yet because just too many tablets!! when i had new PICC line put in on Wednesday it was covered with a different dressing. had a really bad allergic reaction to it and when they took it off on Friday my skin had blistered so badly it all came off with the dressing. Very VERY sore- that’s my worst issue at the moment. Feeling a bit sorry for self and glum, so I’m with you Debra. Things will get better, Glad you stuck with it. Thinking of youand sending big hugs.
I have numb fingers and toes but registrar says it’s not an se of drugs I’m on- any ideas?
Also had rads planning and have been tattooed. Seems easier than chemo, but I always think now that they really play down the side effects so you don’t worry. Radiotherapist said that it doesn’t cause burning, just a bit of pinkness/itching. Not what I’ve heard from others. Especially worried having it in the middle of chemo, because i 've read that they can both make the reactions to each worse. Too much googling- I’m not doing it again!! I’m rambling now and have gone down the endless worries road so I’ll go…
Hope you’re all ok and se’s are beginning to wear off. So glad taste comes back!!!
Morning Angels. I hope Debra and Mell you manage your side effects and pain well it is half the battle, I had Nystan for thrush it is in liquid form with a dropper tastes of almonds at least not another tablet to swallow. My throat still has a tickle with all the tablet. Swallowing I did , I got the doc to check it out the other day said my chest was clear I had been feeling a bit breathless too. I did not have a good day yesterday I was absolutely exhausted doing nothing. I went to supermarket and had to go an lie down when I got in slept for 3 hours. Keep thinking I should feel better than this by now day 16 since last chemo . Going to go out for a while this afternoon with my daughter hope I have more energy than yesterday. Hope everyone is ok . Take care Lynn x
Hi everyone
Debra and Mel hope you are both feeling a little bit better today. Hang in there both of you , as you both doing so well.
Judy/Lyn/Angie - hope the leg aches and pains subside soon. Have you tried co-codamol ? I found this worked for the pain caused by my arthritic hip In the beginning. soaking in a warm bath followed by a warm wheat bag is soothing, although I’m not sure if this will help with the hot flushes!
Hi everyone. I just noticed my quick reply to Mel’s post posted randomly on the thread. I guess that doesn’t work like I thought - lol.
Good to be back folks. I’ve had a lovely break and it felt so nice to have a distraction from bc for a while. I’ve managed a few days out, much better than my Trafford centre trip, though I needed lots of rest breaks and a day in between to recover. Like some of you my legs don’t want to play. They’re very achy and weak as are my arms on and off. I know what you mean about the stairs and breathlessness too Judy. My legs don’t like bending too much, which usually results in my flopping into chairs when I sit down. My OH isno better at the mo with his MS flair up. We must look a right pair when we’re out - such a healthy couple!
I’ve got my rads planning appointment on Wednesday. Glad to hear yours are going well Philomena and Amber. Poor you Mel having to have rads and chemo at the same time. On topof that having an allergic reaction to the dressing on your picc line.
Lynn I’m sorry to hear about your eye. Sounds like more of you are picking up added extras, though Philomena tops the bill with that one
Sorry not finished yet. I kept losing my pkace in my post and thought I had better post it before I lost the lot.
Lori and Kim well done for the weight loss. I’ve had to break my healthy eating routine a bit whilst on holiday as it was so difficult to find food tnat was non dairy whilst eating out.Back to it this week.
Rozz well done for getting to the platform. Plenty of room for more folks. Keep coming. Not long for you now Debra. Well done for persevering. Enjoy the rest from work. This damn disease forces us to make some tough decisions Debra, but your a survivor and no matter how hard you are finding all this you are doing everything you can to beat it and you should be very proud of yourself!
In terms of SEs, leg and arm aches aside, my fingers and toes are very tingly and my nails are suffering - starting to lift and go bumpy and one of my toe nails looks bruised, as if I,ve dropped something heavy on it. I’m also getting heartburn and hiccoughs when I eat - mad. Fortunately they behaved at the wedding meal last night.
Well, I’m back on the sofa again! In my head I’m getting quite excited about what I’m going to be doing when I’m over this cycle, especially in the middle of the night when I can’t sleep and left my phone downstairs… Lose weight, get fitter, train my dog, anniversary break, have some fun … now I just have to wait for my body to join in too. I’m also looking forward to looking like me again. I’ve got the water retention SE so my face has gone chubby, my eyes look really bare and weird with no lashes, my hair sticks straight up in the air like Stan Laurel’s at the least excuse and looks really comical! I’m sharing the tv with OH and son so I’ve been watching MotoGP, the Grand Prix and now football. I’d rather have the company than what I want to watch though. SE wise not too bad, I’m on the big pink ibuprofens but zero energy is the biggie.
Sorry to see you struggling Mel and Debra, hope you feel better & brighter soon.
I may have to play the chemo card soon - they’ve put the cricket on!
Lori - Thanks, it’s good to know the taste comes back eventually, unlike your poor thumb nail. Hope you don’t lose any more.
Rozz - Well done on reaching the platform. Your chemo card post made me laugh. Never crossed my mind to use it for the TV remote.
I do love to follow MotoGP though with OH, and we went to watch British Superbikes qualifying at Cadwell Park yesterday which is not far from us and we took picnic and chairs. Good job too as it’s in the heart of the wolds and I could only get up half the hills at a time before having to sit on them to get my breath back and my legs felt like lead weights with my heart pumping hideously. My taste is slowly returning though as the burgers were soooo good. Had to have 2 just to make sure.
Angie - Thank you too for your low down of se’s on day 25. Gives me something to go on and that little extra push for the last chemo a week tommorrow.
Mel A- Glad you had a good break away this time.
Debra - Not long for us now reaching that platform.
Hope you have a good bank holiday too Kim with all the other Angels. Sandy. x
Glad things are going well with the rads Amber. That’s good to know. I’m still a little nervous about starting mine. I think it’s the usual fear of the unknown. Once I start it I’ll just deal with what comes and hopefully be fine.
Somebody forgot to tell my mouth that I’ve not had chemo this time as my tongue has gone white and furry again. What’s that all about? I’ve got some nystatin left over so I’ve started taking that to stop oral thrush taking hold again.
IOn a brighter note we’ve just had a lovely evening out with my son and a couple of his friends for his 15th birthday. They had a go at go carting, then we went to Frankie and Benny’s for a meal. I really enjoyed it. xx
Angie I had those after my last chemo. It seemed to go for just over a week but is flaring up again. My sense of smell has gone the opposite way and is heightened to the extent that I find some smells unbearable. It’s like being pregnant again -lol.
My hair is growing fairly quickly and evenly, but without any special shampoo. It always grew fairly quick before so I wonder if it depends on what your hair was like before. I’m a bit dubious about how a shampoo can make your hair grow more quickly, though I have heard a few people talk about the fast shampoo.
I’m off for rads planning today so hopefully I will get my start date…fingers crossed for next Monday.
Amber, I started tamoxifen on 7th aug, only thing I’ve noticed is being hotter, all day and all night but that seems to be manageable with not wearing many clothes and a fan on at night. My OH reckons we won’t need heating in winter now as he will just sit near me!
Angie, my calf muscles ache in a morning more now than they did throughout chemo, I’m 34 days past final chemo. Not sure if its because I’m walking more or the chemo…I’m just hoping it goes away soon. Enjoy your McDonalds…is that part of your healthy diet?
Hope everyone had a good weekend, my OH is slowing getting over the gout so should be able to walk again by the weekend, luckily he can work from home as he couldn’t get to the train never mind the office!
Thanks for sharing that thread with us Amber. I feel better knowing that it’s just another SE that will eventually go, though it is frustrating when you want to do something.
It’s reassuring to know that rads are easier than chemo too Philomena. I hope your hospital get a sense of urgency about them soon.
Caz thanks for the tip about massaging the scalp. My husband always said I needed my head feeling
Enjoy your Micky D’s Angie. Enjoy a burger for me
Philomena - Really glad youre feeling better and the meds are working. Your white whiskered chin made me laugh and I for one am going to continue to use the chemo card for quiet some time post chemo as I was always pre-disposed to the condition anyway.
Amber - Three hours round trip. Im looking at the same as our nearest Hospital for rads is an hour away. With regard to tenderness with rads how is wearing the seat belt accross that area? Thanks for the heads up on the muscle thing I will take a look.
Carol - Wow 40 lenghts that is impressive and a good idea as it must help strengthen the muscles.
I love swiming and were going to centre parcs with OH’s family in Nov but im worried about what to wear in the pool. Does anyone know if chlorine effects the new hairgrowth or do you wear a swimcap. Im also going to be white and overweight.
Lynn - Baby brush is a good idea to massage the scalp. Anything to help it along.
Angie - I hope the Rads run went ok today and …
Kate - I hope your Rads planning goes ok.
Hope everyone else is ok and best wishes. Lv & Hugs. Sandyxx
Amber that thread is great, very reassuring that the leg and arm pain is a side effect and not down to being too fat. Ive noticed today that even though I’ve got really bad leg and arm pain, it does seem to be better the longer I’m using my limbs. It’s when I stop and sit down, and then get up, that they really ache.
Lynn I’ve dug out the baby brush and I’m brushing my hair as I type, hope it works. My hairs still not grown any more from the initial sprouting of white hair.
It’s good to read that your all doing well with the rads and that so far the fatigue is the only problem.
I’ve been to the hospital for my pre assessment ready for surgery on Tuesday, they’ve said that if there’s o problems with anaesthetic and I don’t have any problems with fluid drainage, I might be able to go home on the same day as surgery, if not it will definitely be the day after.
Carol, your really putting us to shame with the swimming. If I didn’t look such a beached whale I might give it a go. I’m debating if I should go on the treadmill when I have finished typing this … Could get something to eat while I’m walking on it lol!
Wow Caz - 40 lengths is fantastic!
Judy - I was home on the same day as my surgery. I had never stayed over in hospital before chemo, but knowing what I know now it was not only great to be in my own home but I got to sleep too. I’ve found that you don’t get too much of that in hospital.
I went for my rads planning and tattoos today. 15 sessions starting tomorrow. The oncologist said to give it a couple of months before going back to work after rads. I felt a real fool though as I kept going really light headed and dizzy whilst I was there. I was fine this morning but have been the same since I got back. Very bizarre. I hope I’m alright tomorrow. I think I’m going to be spending the rest of the evening on my backside. Is it too late to play the chemo card?
