Just back from Norfolk today. I can’t say we had a lovely holiday as we spent it all doing DIY – fun to start with, but I’m glad to be home to a “finished” house! (Deeply regretting turning the heating off while we were away though! Its freezing!!) I only overdid it once, and had to down-tools (a wet paintbrush) and sit down for ½ hour to recover. That was the first time I’ve felt chemo-tired in ages. My remaining SEs are painless & only have nuisance value, so I feel quite lucky. Sorry some of you are still suffering. My biggest issue at the moment is tendonitis which I had before DX and would be a lot better if I remembered to do the sodding exercises!
Philomena, I see from your post that your cough is better now, sorry not to see you but completely understand. I’ll be at the cottage again on Friday if you’re free, or Thursday the following week (21st).
Mel – so glad you’re finally off that train! Be patient with yourself over the next few weeks – your head will be about 2 weeks ahead of your body!
11 Angels want 2 nights each. To save money we could book 3 rooms at full price, and 3 with the 20% discount. Everyone would pay £59 now, which is an 11th share of the discounted, non-cancellable rooms. Please note:
Alternatively, I could just book the rooms at the full price. No deposit needed and can be cancelled the day before.
So, let me know if you want go for the lower-cost option and I’ll book accordingly. (e.g. I”ll go for 2 rooms at discount and 2 at full rate if 8 Angels want to go discounted etc.).
Sorry if the above is a bit confusing, I’m an accountant so I can get a bit **bleep** about this kind of thing! Happy to answer any questions!!
The Spa seems quite relaxed about bookings, I’ll book the treatment lengths you asked for but they only want a day’s notice if you can’t make it and don’t want payment up front. I’ll also ask for more details of the actual treatments, but seems to be massage, facial or manicure/pedicure.
Mel – good if you could sort out the evening! I’m up for the meal as well as the show. I’ll make sure all the treatments are finished by 4 so there’s time to un-chill and get ready!
Love & hugs,
Sorry not posted for a while. Been trying to keep up with all your post tho....
Can certainly relate to the fuzzy downy face and achey limbs think Tamoxifen to blame there.
My oncologist did say my body could get used to the aches after 3-12 months (but not definate - eeek!) and to try evening primrose oil as well as the painkillers in the meantime, doing all that but to be honest does not seem to be making much of a difference. I'm still trying to decide what to try for my downy face the new no-no is a tad too expensive me thinks!!
Had Herceptin No.5 on Monday and got some great news....New Injection now available at my Hospital so future administrations will be injected into the thigh over 2-5 mins no more infusions - Happy Days!!! Hopefully give my arm a chance to recover. On advice from my physio my other half has been working frantically on a evening doing massage to try and soften and stretch my hardened veins so they are starting to be less visible.
The Acupuncture for Hot Flushes is going well too I have had 4 so half way through and they seem to have reduced quite alot.
Have an appointment to discuss reconstruction again on 10th December, I think I am veering toward the tummy procedure but worried with all these aches then surgery I will not be able to move. Plastic surgeon also said she would probably not do this option until after I complete Herceptin which will be next August. I think if I consider the back procedure I could probably have that done sooner as not so invasive, but a huge Op all the same....I have some time to ponder!
Strange thing happened the other day, took a bleed, I thought (hoped) I'd seen the last of periods after this on slaught of treatment....any other ladies experienced this, could it be that or something else? I mentioned it to nurse and she said it can happen?
Rozz, thanks for all the info on Spa Day - I hope to make it but can't really confirm for sure as yet, depending on what/when recon I decide upon. If I can make it I would stay 2 nights and would like 50min treatment time.
Diggy Wiggy, have you got the option to change to the new injection of herceptin, I hope so?
Sandy, your fireworks night sounds like one to remember (precious moments!) hope you are recovering well and feeling ok since starting your tamoxifen.
Amber, sorry to hear about your daughter, hope she is recovering ok and that your ok too after the worry of it all!
Mel, so chuffed that's you off the train....its been a long time for you and a struggle to say the least so I'm really pleased for you!
Judy, hope you are feeling ok since completing your rads.
Hope all you other ladies are doing ok - glad to hear some of you are off on hols, on hols or back safely from enjoying your hols ha!
Take care, love Lori xx
p.s just done a spell check on the above and would you believe 'Tamoxifen' want's to change to 'Damnation' Ha!!
Yaaaaaaayyyyyyyyyyyyyyy. Absolutely well done Mel. Gentle hugs all round on the platform. Hope your not feeling too bad. It won't be long before your taste buds are back and you feel a little less tired each week. You really have been through the mill so take it easy sweetie and look forward to us all meeting up.
I went to see the oncologist yesterday morning who would like me to start radiotherapy as soon as the last implant fill is finished a week on Weds. I thought I'd ducked out of that particular therapy but it seems not.
Mel - The meal and the show would be something OH and I would love so you can count us in for that. xxxxxx
Yeeeeaaaaahhhh!!! Fantastic news, well done Mel!
Hope the next week or so goes really well and then you can enjoy celebrating with your favourite food and drink too! Loving the image of you arriving at the station, or maybe I should say tumbling out the carriage to all us waiting angels xxxx
FINALLY FINALLY MY TRAIN HAS ARRIVED AT THE STATION. THE DOOR HAS CREAKED OPEN AND I HAVE FALLEN OUT ONTO THE PLATFORM IN A CRUMPLED HEAP!!!
Only slept about half an hour and have now given up lying there staring at the ceiling. It's great to log on and find that you are all planning for meeting up. Thanks Rozz you're a star!! Have chemo brain so better go for cancellable stuff. I would like to come for 2 nights with the 55min spa treatment- I think! is the room and treatment deal cancellable? If so I think I'll do this with lunch - can't really process the info atm but PLEASE put me down.
Can't really believe I've finished chemo- feel slightly euphoric ( as well as sick, tired, aching and worried I'll end up back in with neutropenia)
couldn't celebrate with food or drink, but did sing all the way back in car!
Picc line out next Friday if I am not admitted.
love you all Mel xxx
I will be travelling over with OH on the Saturday and staying with a relative in Manchester so won't book for anything just in case there are any problems on the farm and we have to return suddenly. We would love to meet up with you all and join in the Saturday night plans though if that's ok with everyone. Just can't wait. Lv to you all. Sandy xxx
Rozz, thank you for doing all the leg work. I would like to stay for both nights and have a 55 min spa treatment (I assume we have a choice of treatment - do we choose this when we get there or up front?). I am happy to pay a little bit more and have the cancellation option just incase its needed.
Manchester is great for restaurants, entertainment and shopping so whatever we get up to I am sure we will have a great time angels.
I am about to start discussions re return to work dates and hours. I don't have the option to work from home so think it will be a case of using accrued leave to phase in over several weeks. I had a couple of good days earlier this week and did a bit more which I think I am paying for now. Bed at 8.30 or 9pm because I can't stay awake any longer. My hands are bothering me alot in the mornings as are the joints but am trying not to take painkillers as I dont want to be taking them all the time. I have small windows of time when I feel more the normal me, which is just fantastic as haven't had this for several weeks. Feels like light at the end of the tunnel. Hopefully, over the next few weeks they will happen more often and last longer!
Take care, Carol xxx
Roz thanks for phoning hotel I would like to come for two nights with a 50min spa treatment, I assume the spa treatment will be on the Saturday as I don't know when I will get there on the Friday. How much will that be each then is it £170 up front non cancelable or £189 cancelable for the two nights if sharing and going to spa?
What option did you book ? I could faster payment you the money to pay up front, although It will probably be easier just to go for the cancelable option then no one will be out of pocket.
I have never been to Manchester ever, not been to a. Comedy club in years sounds good for a laugh!
Hope all you Angels are well Lynn x
I contacted the Park Inn hotel this afternoon and it seems we need to get our skates on as the Spa is fully booked for 6th April already! Sorry if I’m repeating info already provided by Pauline, but I can’t find the original message – there are just too many!
The standard rate for a room is £129, including breakfast. Rooms booked at the normal rate can be cancelled anytime up to 6.00am on the arrival date. There is a 20% discount if we book early, but these rooms would have to be paid for in advance, and would then be non-cancellable. I don’t know if any of us are sufficiently confident of the future for this option?!
If you are feeling confident, there is a Spa Package deal for £105 which includes a room for one night and a 50 minute treatment, based on 2 sharing a room of course. Saving is almost £20 each.
The spa is £30 for a 25 minute treatment or £60 for a 55 minute treatment, latter includes lunch. I just booked it (!) but they need to know how many want 25 mins & how many want 55mins. They can "do" 4 at a time so our treatments (back to the nice kind now!) will be between 1pm and 5pm, or less if some only want 25mins. There's a pool & gym to chill in, or not, in the meantime.
I don’t think we need to sort out who shares with who at this stage. If you let me know how many nights, of number of nights etc., I’ll work out how many rooms etc. As I can stay with my parents on the Friday night, I can make up the numbers or not as necessary.
So, could all the ladies who have expressed an interest let me know:
1) If you want to stay at the hotel on both Friday 4th and Saturday 5th.. or just either day.
2) If you want to go for the spa package for one night.
3) If you want to come to the spa and if so whether you want 25 or 55mins.
4) If you have any questions, or if you think I’ve forgotten something important!
Pauline, please include yourself too, I'm happy to change the reservation if your holiday clashes with it. I would be a real shame if you find you can come later on but there isn't space for you.
Now, someone else needs to sort out the entertainment. Did someone mention a comedy club? I've decided to get as many laughs in as possible now!
ive got the downy fur on my face too, i think it is normal. ive got hairs up my nose too - never thought i'd write that sentence!!
yes the hotel will secure a room on a card but check the cancellation time just in case they take from the card. its normal practice for the cancellation to be in writing so check that too.
its crappy weather up north too. very wet n wild.
well done judy, getting back to normal soon?
rozz - i asked about lymphodema today as well, nurse said it would feel like stretching tight skin, so i dont think ive got it. ive just got pain, possibly nerve damage or something, numb and not very normal so it feels strange.
amber - best place is on the sofa!
maisiecake - almost there!
i had a shock today at work. our kitchen assistant who lives at home looking after her 80 year old mum (she is 60) has just been diagnosed with BC. it made me cry, i felt so sorry for her, she had the day off to take it all in. unbelieveable, thats 3 of us in one place now. Its everywhere isnt it.
Judy – congrats on finishing rads. Another step closer to getting your life back!
Amber, I still haven’t seen the lymphedema specialist, but had a chat with one of the physios today during my pilates class. She said it can be managed well with a compression sleeve, available on prescription, the trick being to learn what I need to do to keep it under control. I can’t say I’m happy about it, but it’s only a nuisance so far.
Sandy, great news! Nice choice of name for the trial.
Lynn, welcome back! Hope you’re getting used to UK weather. The fact that you can’t walk far is something your line manager should know – don’t underplay your symptoms or how long they might take to clear up so you get to return to work at a pace that you can cope with. I started to organize a spa/hotel weekend for some friends, but had to hand it over when I was diagnosed. I suspect we can book the rooms on a credit card without making a payment up front and cancel with only 48 hours notice. I’ll give the hotel a call tomorrow – chemo brain willing!
Night all, sleep tight.
great news Sandy I'm so pleased for you.
Rozz- sorry to hear about the lymphoedema, hope you get some help soon.
Judy- I have a hairy face! I think it's really noticeable, but was thinking it was just lack of head hair that made it stand out! Glad I'm not the only one! I haven't started tamoxifen yet so it's not that for me. My pathetic layer of head fluff is thinning again after chemo- quite fed up with grey fluff now. Got another voucher for a wig girls, as it's been 6 mnths. Now is it going to be a grey one so there's not such a big change when I stop wearing it?
Last chemo Friday- can't wait
love to all you lovely angels xxxx
brilliant news, i bet you're chuffed. makes you feel better when they tell you that the insides looking good too.
i'm really pleased for you
Thank you Angels for your posts regarding surgery. This time last year I had a 4.5cm fibroid thingy taken from my left breast. Stupidly thought the healing process and time would be the same for the Mx and expander implant. Aparently its the node removal and cutting of the nerves that causes the tingling, numb and scolded sensation in the arm. All within normal prediction I was told.
That was this morning when I went for the results and outcome of the operation. OH came with me and the surgeon said it was fantastic news. Out of the 19 nodes removed none contained any trace of cancer and all margins were clear with no evidence of disease. I go and see the oncologist on Friday to see if I need any radiotherapy (the surgeon thinks not).
So I now have to start Tamoxifen tomorrow. I have expander fill two weeks today and I will be given a date when I have to re-start Herceptin infusions. However, when I came out of the consultation room I was asked by a man who was to do with research whether I would take part in the Persephone clinical trial which basically means six months of Herceptin versus twelve months to see whether six is just as effective as twelve. More decisions......but actually I don't care at this moment in time. Going to ring all and sundrie and tell em all the good news.
With regard to surgery recovery, Kate it was when i read your post first, and then everyones elses, that I realised it's just what you have all experienced so thank you angels for putting my mind at rest. And Judy - congratulations on finishing the rads. Mel - All the best for Friday. Nearly there!! Lv & Hugs Angels. Sandy xxxxx
amber - i told doc about not being able to lay on op side and she said take pain killers before bed, so i did and it works, it doesnt wake me when i turn on to it,
i went to docs and i'm not nuts but she thinks i have picked up an infection, poss uti, and ive got high blood presssure. she was great, i'm going back for bloods and sort out whatever it is, i do feel better, had anti biotics for infection.
sorry you're feeling poorly Sandy. Just to add mine to the rest I had tingling and numbness under arm and down arm which has slowly reduced.(op in feb), but not completely gone. I get occassional stabbing pains, and had the 'chapped' feeling under arm which eventually went after several months. Take the pain relief and hope you get some help tomorrow. I'm with Judy on the fluid draining- unfortunately mine started to leak! It's early days, give it time. sending hugs xxxx
I can’t believe its over a week since I met up with Mel. We had a meeting of minds when we decided that 1½ Labradors is too much for one house! It was lovely to meet her and her family – and sorry again for the tea incident Mel! Have a lovely time in Anglesey; hope the weather is better there than here. No trains this morning due to the weather so a long journey into work for a meeting that ended up being cancelled!
I think I now officially have some lymphedema in my left arm. The water retention after the Tax just didn’t go away. Sometimes I think its going, but then it comes back. There doesn’t seem to be any rhyme or reason to it. I’m trying to get an appointment with the specialist (physio I think) but everyone seems to be on holiday. It’s not bad, and certainly not painful so I can wait.
My biggest problem at the moment is the hot flushes at night. I just can't get back to sleep after I've had one. They’re not bad at all, don’t last long and don’t really bother me during the day so I hope that when I get back to work properly I’ll get back to sleep more easily, being more knackered
Congrats on finishing rads Carol. I was told skin is worst 1 week after rads, which was true, but not bad. Hope your skin holds up too. Keep slapping the aqueous on!
Sandy, sorry to hear you’re still suffering. You are not a nuisance; it’s the medics job to look after you and they should help if you’re in pain. I feel a bit guilty sometimes when OH does things for me but that’s because I’m feeling so much better. You’ve just had surgery for goodness sake! Rest up, get better – that’s all your family wants.
Angie – hope you enjoyed your pink day! Sounds like such fun.
Phillomena- OH and I will be at our cottage in Winterton for a few days. Would you like to meet up? PM me if you’re free. I’ll have to coordinate with deliveries & DIY but it would be great to see you. Fantastic news re the BRCA!!
Mel – tell your daughter well done from me! See you on the platform on Friday at last! Fingers crossed your last cycle isn’t too bad. Hope the counselling helps you work out what you want your future to be. Stepping back from everyday life gives us the chance to evaluate things properly, I think.
Amber – hope the tiredness is just a blip. Our poor bods need to be treated kindly, but the exercise is really important so don’t give up!
Pauline. Enjoy Florida! Bone scan was a bit weird (you’ll be radioactive for 24 hours!) but not uncomfortable or anything. Pic of my skeleton seriously weird – but at least I looked thin! Hope you can join us in Manchester; you’ve done so much to bring us together it won.t be the same without you. Hope your dads results come thru soon, and are ok, uncertainty is hard to handle.
Love & hugs to you all,