Sandy - our posts crossed! I'll be thinking of you on Thursday, hope all goes well x
Kim - well jel!! have a lovely time, soooo looking forward to my hols at the end of the month 😎
Judy - belated anniversary wishes, sounds like you had a lovely night
Mel - hope you get out soon Mrs, we're all thinking about you x
Sandy - soo glad your eyes are getting sorted, I had a bit of trouble a while back, it's so annoying!
take care Angels
Hey Judy, weather not too bad here either near sunny skeggy. My op is on Thursday so I shall joining Mel in hotel hospital if she's still in. I'm really trying to be brave but I was up most of last night scaring myself with the "what if's" and should I have gone with the tummy diep instead of the expander implant? Three things putting me off that though, is the massive tummy scar from hip to hip and the extended recovery from two operation sites and the risk of the blood vessels not knitting together with partial or all of the tissue dying. The LD flap is out too as the surgeon did say I may have problems in my job with regard to pulling or movement in the shoulder and back when trying to ride or lead strong horses. So I'm just going to stick to what Ive decided and can only hope for the best. Or should I find a new job....................... No, who's going to employ me with this DX hanging over me................... or should I................... or should i.................arrrghhhhh.
Sat here in the cold too with loads of jumpers as the plumbers are in trying to put a complete bathroom in before I get home possibly Friday (i hope) so no water, loo and the back doors wide open as there in and out all the time. It's not their fault. My original op date for WLE was for Sept 26th and I would have been feeling much better by now had we stuck to the previous plan. At least It should be warm in the hospital and the loos work. Having to go next door for now.
Happy holiday Kim. Have a great time. x
Mel - Lets hope your oncologist gets a shift on now your on the ward.
Moira - It's good to hear from you. Your right about the age thing at least this disease had taught me to live every day now. We went to watch OH grandson play football yesterday. I was in tears as soon as I saw his little 5 year old legs fighting for every chance to defend the goal. I wasn't biased either he really was third best player to the goaly and there goal scorer. In fact the wind carried the ball so fast toward the goal he jumped to head it away and it knocked him clean off his feet. It hurt him so much he cried however the goal was averted. We were all so proud. Later, my daughter and I made a lovely milkybar cake. Some thing I didn't have time for before as I worked every weekend teaching. I really do feel I have missed out on so much of the little things with my kids now. Still I'm making up for it and the farm Ive worked so hard for is mortage free.
Got to go, have to make a desicion on whether the tiles should go on longways or sideways.
Hope all other angels are keeping wrapped up and warm. Lv and Hugs. Sandy. xxxx
Oh Mel, I hope they let you out soon!! Keep asking if results are in, do they know when onc will see you, etc.
I've found it works sometimes if you keep asking all and sundry!!!
Thinking of you and hope you get some sleep xxx
glad you're feeling better Mel.
Judy Happy anniversary!
Sandy_ glad eyes are improving. Another tip for dry eyes- johnson's baby shampoo is really good to wash them with. I know it sounds a bit mad but I was told this by eye consultant and optician. just use it like you would a face wash. works really well for me especially now I have no eyelashes.
Well angels i am still incarcerated. have just moved to oncology ward as they finally have a bed. bit sad because i have been moved from my lovely ensuite single room with a view to a room for 4. Oh well - hoping the onc might actually get round to seeing me here! Still having iv antibiotics, have had blood test yesterday but don't know what neuts are now as haven't seen dr yet. my tongue no longer looks like a slug in an organic vegetable patch and i can swallow again. I WANT TO GO HOME!!!!!!!!!!!! Thanks for all your supportive comments- it really helps to know I'm not alone.
love to everyone Mel xxx
Lynn a huge thank you to you. I fought for another appointment at the Dr's yesterday and got in at 9am. I found myself in front of a young practitioner who I couldn't understand. I gave him a copy of your post with the eye gel you suggested and after a swift look at my eyes he gave me the prescription. Mostly because i was getting hysterical as he was suggesting I go back to the eye clinic after he had "spockin wid de oncoolageest wheech gud dake a wick or do".
Got home and squeezed twice the recomended dose in and guess what? Within an hour the constand pain of slashing eye sydrome gone. YES GONE. Yaaaaaaaay.
Judy - If anyone wanted any clinical trials they need look no further than all our posts. Girls doin it for themselves eh? Love that were all looking out for each other. Have a lovely anniversary and family meal. Your hair looks good on your pickie by the way.
Mel - Wish we could find a quick solution to getting you out of hospital. Hopefully they can get you the correct dressings now. Rant all you like sweetie. Makes my eye trouble feel so minor after all you've been through. x
Pauline - Good to hear from you. Really praying your dad is better soon and the scan is so much better than thought. Hope your not woking too hard. Must be tough worring for another family member as well as yourself. Take it easy sweetie. x
Mel A - Im still getting those muscle aches too and I can't do a lot either. Don't know about you but it makes me feel guilty at not pulling my weight like everyone else. It's a lonely feeling isn't it. But like your MIL, there some lovely people out there ready to help.x
All other angels have a good weekend.x
Got to go haven't hugged my eye solution tube in over an hour. LOl.
Lv and Hugs. Sandy xxxxx
Hi Angels, ages since I have been on as a lot going on!
Congrats to those who have finished treatment recently, now for the road to recovery. Mel, so sorry to hear you are back in hospital, you really have had a crap time of it.
I've been ramping up on the work front and have had a few days away here and there. Was at a lovely hotel / spa on the outskirts of Glasgow last Sunday (Mar Hall) and bumped into Rod! Sorry Amber, we were ushered away before I could get a photo op or autograph! Also waiting on scan results for my dad, he has not improved at all post rads and had another scan last week...not looking too good...
I'm feeling ok, still tired lots and a bit achy but that is definitely getting better. Still have hardly any hair or brows but can feel lashes starting to come back.
Holiday season seems to be upon us so may need to wait until that's over before booking up to ensure we all get rooms at the same time. Amber is away just now and Lynn, I think you go soon and IO go on 31st Oct. Maybe need to wait until November to book.
Sorry for not mentioning everyone but just too much to read and reply to since I was last on. I am thinking of you all though xx
Take care Angels
It’s nice to feel more normal again, but unfortunately the Achilles tendonitis that plagued me last year is back with a vengeance! Every time I get up and start walking I have to crank my ankles up again - so more starfish walking! I’m back to doing the exercises and Pilates again. I’d nearly got rid of it before my DX, but 6 months of “resting” didn’t get rid.
Debra – I was surprised how long it took me to get over the last chemo. My head wanted to be getting on with life, my body wasn’t so keen. Don’t expect too much too soon and before you know it, you’ll start to realise you’re feeling normal again.
Sandy – the drains have a slight vacuum to help with the drainage so they need to be fitted in hospital; they’re replaced rather than emptied. If the treatment for your eye didn’t work, you have to go back. Its frustrating but the specialist needs to know what doesn’t work. I’m with you re Ruby – she seems so under-confident I hope she keeps it together. Kimberly’s good too, I think. It’s a very good job we don’t have tasty-vison!
Fecinora – fingers crossed for your test results – the waiting is awful, isn’t it.
Kate – Christmas cake … mmmmmm! I had a flu jab at work last year – within 6 hours I started to feel ill…. and was in bed for 6 days! I know its not supposed to be a “live” virus so can’t give you flu, but I think I’ll give it a miss. Hope you enjoy being at work again, take it easy tho’!
Judy – good to hear you’re painting again. Hope the gales stop soon. I think our bodies are still overreacting in case we chemo them again!
Angie – I’m with you on the eating well front. I think my body needs some proper looking after now; but I keep reminding myself that means veggies not chocolate! Your colleagues sound wonderful; must make working much easier!
Lynn – Onc said use 1% hydrocortisone cream on my itchy skin (better than scratching) the radio ladies also suggested Aloe Vera gel which I think is better (mine is double strength from Holland & Barrett). I use HC cream am & pm and the aloe vera when I’m home for the day -I smear it all on & go bra-less (I discovered a stash of camisoles!). I forgot the aloe one day and really missed it.
Only 4 more rads to go – then I’m having a lie in on Thursday – I’ve missed getting up when I feel like it, especially when the hot flushes have kept me awake.
the first week was tiring, i did have a few wobbles but i did 30 hours. now i'm back to full strength so its ok and i'm full time as well.
i will certainly make the little pinky bra man send me a photo, he tried his costume on today, he's glad he doesnt have to wear bras all the time bless him.
live chat tonite ?
Thank you for your posts. I went to the eye specialist on Tues. First she put anasthetic drops in my eyes which gave immediate relief. (Wanted to grab the bottle and make a run for it). Then I had an eye examination for which she could find nothing wrong with the eye itself. So then I got a prescription for Celluvisc which i think is another tear drop containing a substance which lubricates the eye. Ive been using since and it has done nothing to help. Where to go from here I have no idea.
Mel - Where do I get the Cinitas from Ive never heard of it but am willing to give anything a try. You sound really sore too and I know how you feel about making all those extra appointments. It's just so tiring isn't it but you do need those dressings so I hope youve seen the district nurse and got alternatives that work. Looks like we still have to fight for what we need. You have really been through mill though what with chemo and rads so demand what you need and no waiting in waiting rooms or surgeries. (Failing that, and with your new condition, just let rip and clear the room). Lol
Judy - Rozz - Can you empty the drain yourself or does someone have to do it for you.
Judy - Best wishes for your rads. I really hope all goes well for you. And it's lovely to hear your painting again.
Kate - How long does it take to get the expander to fill? All they said to me was that it depends on what you can stand during and after each fill and on what size. I'm a 34b. Xmas cakes already, working too and only just finished rads. Get those power naps in.
Rozz- Ticking off those rads. I hope it's just the itchy skin you get. Love the British Bake off too my monies on Ruby to win as long as she stays consistant. No diet for me either yet. Nope Sirrreeee.
Off to give the drops one last go. Lv n Hugs. xxx
hope youre all keeping well.
kate - back to work does very quickly turn back to normality, i dont feel like ive been away at all. hope it goes well tommorow.
rozz - i'm not losing any weight but i think ive lost some fluids from round my chins. i think we have to eat well to stay strong though so i'm not dieting yet! i'm 3 weeks almost post rads and i'm wearing my asda post surgery bras as normal, so its not long to recovery.
judy - glad youre painting again. i found i had eyelashes today, i felt them when i was rubbing my eyes, i was showing everyone at work, i keep touching them! i have bingo wings too - did i have them before? not sure.
i have to say, there are some relly kind people in this world. its breast care awareness month?? apparantly, i didnt know. one of my bosses ( jocky - a short stout man) is going to do the carvery at my work on sunday wearing a pink bra so that customers can donate to breast cancer charities, because 2 of his staff have had it (me and another woman) i just think thats great. ( i will ask if its just so he can wear a bra lol) . his wife did the macmillan cake thing in the hotel and raised over £1000. arent some people just lovely.
Thanks for the good wishes sandy and Mel, it is only 10% chance of positive BRCA, so here's hoping.
Lynn, thanks for the tips and info on route and parking, I wouldnt have thought of that way, makes good sense.
sandy, hope eye clinic sorted you out.
Mel, can you leave a request for your DN for dressings, or phone them? (I know GP practices vary in helpfulness)
Post op I said I would go in if needed, but I had two home visits! You need this sorted!
Best wishes to everyone xx
Well done Debra, your tough time is almost over. Kate too for finishing rads . I have 6 more zaps to go, and yes, I'm counting! My skin's itchy but not really sore. I get uncomfortable wearing a bra all day so don't regret only going in two days a week. Mel - hope your skin settles down soon, you're nearly there.
Sandy - Its no wonder you're feeling miz. Uncertainty is really difficult to handle and you have loads at the moment and its awful to be in pain too. I hope you get a cure for your eye - something you really don't need right now. I hope I can set your mind at rest regarding the drains at least. I had 2, one under my boob, one at the side. The hospital gave me a really good cloth bag (£1 from Primark!) which had long handles so I popped the drains in it, hook the handles over my shoulder and move around just fine. I did walk off without the bag a couple of times, but not far!! After one of them gave up & was taken out (and I was feeling much more recovered too) I put the remaining one in a sock and pinned it to a fabric belt around my waist. Still a nuisance, but totally hands free. It was wonderful when the last one was removed but looking back, it was no biggie really.
Phillomena - good for you for having a go at the GP! He either didn't know or didn't care how important his letter would be - he does now! Did you get your angio results?
Watching the Great British Bake Off - how come they're all so slim? I'm putting on weight just watching!
just been catching up on your posts- you've been busy again!
Sandy- hope you're feeling regrouped and rested today. hope they can sort your eye out soon as. I think going with the flow is a good strategy to get you through. My eyes have been v sore on and off through chemo. I had some drops which didn't help from onc, and now I just use clinitas sooth which I've got before for dry eyes. They don't cure it but they're very soothing. My vision has also deteriorated a lot during chemo- hoping this might improve!
Fecinora- hope your results come soon so you can make a decision. It must be really tough to deal with rads and surgery at the same time. sending virtual awesome angel hugs
I have terrible wind at the moment- I'm not fit for human contact, so am trying to stay in. have to go to chemist to collect more dressings for skin. Haven't found anything I can use to stick them on with yet that doesn't blister my skin. I'm keeping them on with will power alone! I've got an appt to see district nurse about this, but honestly don't think I have the energy and don't want to wait in the surgery as WBC will be low.
love to everyone else
Fecenora, needing a double MX halfway through rads would be really harsh for you and I hope and pray your results are in soon and that you only need the rads. All the best for that sweetie. Sounds like both you and Lynn have trouble parking at your hospital. Me too. I was going in and out the barriers at our hospital last week for twenty minuets looking for a spot.
Philomena - Even down under I can see you really do have some a really good hairline going on. Well gel. LOl. What does ATOS mean? I'm in awe of your strength in letting the GP know how you felt. I used to be like that but am beginning to feel a little battered and bruised at the moment so just sit there not taking an awful lot in and going with the flow. Hopefully back to norm once the se's are gone and the op is over.
Mel A - My op is on Oct 17th. A week on Thursday. I do hope you feel better today and your early night has bought you a brighter day today. You have already been throught a lot so take your time on your recon decision. Im sure you will choose whats right for you. Im kind of a jump in and wait for the consequences kinda girl otherwise i'd never make a decision at all. I didn't do alot yesterday either but the rest has bought on a regroup this morning.
Judy - Me too. Although Im nervous of the Mx. It's now the drainage and the pumping up of the expander afterwards thats on my thoughts. A bit like the chemo not sure what to expect. But were all getting through right?
Diggy & Lynn - I hope my eye problem is sorted out today. At my appointment for pre-op the doctor called the eye clinic and got me in today for one o'clock. Another big thumbs up for Boston from my point of veiw. If I hadn't I would have taken yours and Philomena's advice and booked an optician. Didn't think of them before so thanks again. You've all been great.
Will let you no how I get on. Much hugs. Sandy. xxxx
Sandy, I hope your eye problem is resolved, sounds like chemo effects/eyelash deficiency. This crap does seem to go on forever doesnt it.
No, I definitely dont want to delay rads any further, but if I find I need dble mx and rads half way through the post WLE rads, well, I have no idea what happens in that scenario. I'm just hoping BRCA result comes in soon
Lynn, should I expect every Beatson appointment to be running late, or does it vary? My times are 10.30, 11.00 and 12.00. I have a lovely friend who offered to come with me, but she has to be back to get the weans from school.
Philomena, GP sounds more ATOS than ATOS (I nearly applied for a job with them, but just couldnt bring myself to)
HI Sandy sorry to hear you are suffering, I had the sore running eyes unfortunately I had it for about a month, I ended up getting 3 different lots of drops third lot did the trick they also cleared the tear duct. My optician said if I have any other problem with eyes to go to him first as the GPs don't know enough about eyes to know what to prescribe .
I had my first booster rads this morning they were running behind as one of the machines was down but it was ok only 3 to go. Hope everyone else is well Lynn x
Had to call the out of hours NHS No yesterday. Ive had the most painful right eye for two days. Feels like some ones stabbling a nail into the corner and just below my right eyelid. Was told to go to my local hospital to see a doctor who turned out to be about 18yrs and daren't really prescribe anything because i was on pallitive care. I burst into tears but then thought that should clear it. It hasn't. However, I am at Boston again today for pre- op assessment so I'm hopeful they will know if it's yet another post side effect of chemo. Does it never end? Feeling quiet low with the op looming, possible rads after, and anything else they might find whilst there in there. I still have very little hair, no eyebrows and definatley no eyelashes. He told me so yesterday. So what with no hair, lashes or brows and no makeup because of the bulging, sore, weeping eyes I look and feel a mess. Whoa is me again........
I did have to laugh though at the attempts of loading of photo's and my obviously still present chemo brain as I spent ages looking to see how I'd missed Philomena mentioning a trip to Australia and then laughed at Mel A's trip to Wales as an obvious link to her photo aswell. Lol
Debra - Yaaaaaaaaaaaaaaay. On that platform. Well done. x
Mel - Just one more to go then your there. Not long now. x
Fecinora - I was told I may or may not have to have rads after surgery depending on the pathology results which is now scheduled for Oct 17th. Ive asked for MX with expander recon on my right breast. I was also told that the I should have surgery six weeks after the last chemo. Maybe thats why they want to start the rads if there is any delay but I would be asking questions.
Kim - Congratulations on finishing your rads.
Diggywiggy - That eye thing you had. Did it make your eyes really sore?
Judy - I have the horse shoe thin hair thing going on too at the top. In fact when OH and i turn round my you can't tell the difference.
Hope everyone else is good and has had a lovely weekend. Sandy. xx