Hi Lily, good luck for this morning. Just think next Tuesday you will have finished - I feel very pleased for you.
I still have my cough slightly so hope all the blood results come back ok on Thursday. I have to ask what does HR mean??? If it means rochelle support group it is next week wed 19th. If it means something else let me know.
Regrading the xmas meal I will suggest a few dates later once I can concentrate when JAck is at school !!! and put the menu on to see if we want the xmas meal or the normal menu.
Tracey I hope you are ok and Thur?Fri will be ok and just think we are half way through. Talk to you later.
Hi,
thanks Sharon, I did mean Rochelle house. I am really glad 11 is done but very woozy from the piriton tonight and need to sleep it off before tigger bouncing starts on steroids tomorrow. I can see anothe jigsaw starting!
Hugs to you 2 for Friday. One of the nurse stabbed her finger with a used needle today so both her and the patient had to be tested for everything, poor girl
take care
Lily x
Just checking in! Hope you are all getting ready for Christmas…
Lily - the end is in sight - hurrah!
Very excited, as my three or four eyelashes on each eye which never went are now being joined by some stumps! Hair on legs have grown back A LOT. Not much in private parts, eyebrows nearly like Dennis Healy, and hair on head still like Sinead O’Conner. Sadly I don’t have her gorgeous face… or her voice, or her money. But I am not quite as barking mad as I recall she was!
Hi evryone, started steroids today so …buzzing!!!. no 3 tomorrow HALFWAY THROUGH HURRAY, catching you up Lily. How are you doing.
tracey and I would like to invite you all to join in with our christmas meal at the Fox nad RAven ( we can’t pay for you you understand!)
Date: 16th Dec
Time : 7.30pm
Cost : £15.95 per head
Menu:
Starters - soup of the day; king prawn cocktail; wild and button mushrooms on focaccia with stilton and sweet cure bacon or chicken liver and brandy pate with pink lady apple chutney and toast.
Main - succulent roast turkey with all the trimmings; cod loin baked with a crushed pea crust, tomato garlic sauce new pots and veg; 8oz rump steak with chips,onion rings, chargrilled tomato and mushroom and peas; venison pie with mash and veg; pumpkin risotto with roasted peepers,goats cheese and tomoto topped with rocket.
desserts - christmas pudding with brandy sauce; rich chocolate yuletide log with whipped cream and blackberries; sticky toffe and date pudding with caramelised pecans and vanilla icecream or raspberry jelly with creme fraiche and fresh raspberries.
if you like the sound of this and would like to join us please let me know by end of next week adn what you would like to eat as I will need to book this. Lily if yu can let Bev know also.
Hi,
sounds fab Sharon and I will pass it on to Bev. I need to find out my surgery date really before I can say definitely yes. So if you book it, I am sure they can easily add one or two more on the table. In theory yes I would love to come. Well done for all that typing must be the steroids!! I did your jigsaw in one night as on steroids already, enjoyed it. Lots of luck to you and Tracey tomorrow and then you will be half way. Too right you are catching me up, even my research nurse is surprised I lasted out on my 28 weeker. The prof was running 3 1/2 hours late for his clinic yesterday!!! So he is doing extra ones and I go to see him next Tuesday instead of Thursday, got the first one so hopefully not a long wait but it will be straight after chemo, so I will be half aslee! Not good as I want to ask loads about rads and hormones.
Rebecca hope we will meet up some time so I can admire the eye lashes!! Sounds like it is all getting back to normal slowly. I am so excited about finishing chemo but a little scared too. 191 days on chemo done and 5 left to go !! I have been on this since May and it almost seems like a way of life now - hopefully not. Jen hope you are going ok, have you started the trial yet? Claire and Sheila hope to catch up too some time.
love
Lily x
Hi All,
well 3rd fec done today, all went fairly smoothly chemo wise except couldn’t sit next to Sharon and I sat opposite her trying to lip read what she was saying! Feel a bit woozy, went to sleep for 2hrs when I got home but then I had a lorazapam this morning so it was not surprising. Have had touch of the ‘Mr. Mannerings’ again. Back pain came back with avengance this week and I have been in a lot of pain. They have convinced me to have a scan if it doesn’t settle within the next week or so. Strangely, since I had the chemo all the pain has virtually gone which I guess is either the lorazapam or the steroids. They are keeping an eye on my tumour markers now because of this. Why is there always so much to worry about? I’m fed up with it all. Sorry if I sound a bit of an old gloomy, I think being in pain, plus the chemo and sedatives have all made me a bit weepy.
Anyway on to much cheerier things, looking forward to meeting up for Xmas, it will be nice and I hope most of you can come. Please let us know by the end of next week so we can get it arranged. I think it is very reasonably priced.
Rebecca, I am hanging on to my eyelashes like a drowning man to a twig! I can manage withouth the hair, but those of you that know me, I just love my mascara!! Glad to hear there is light at the end of the tunnel and you souning chirpy.
Lily, so last chemo and Prof. in one day! hope you are not too sleepy to ask him all the questions, yes do write it down, hope he is in one of his more talkative moods. I’m sure it is only natural to feel a little bit scared about finishing chemo at the same time as being relieved. I’m sure as time goes by you feel more confident and don’t forget the protection you will be getting from the rads and the tamoxifen. Did you do the whole puzzle in one night? takes me 2 days just to do the sky! Well, hope to see you soon Lily x.
Sharon, hope you get some sleep tonight, and pass on my thanks to Tracy and Angela aswell for today who really looked after me. Quite funny how Angela was virtually feeding my while I was having chemo!! Hope you are not to sore from the veins messing around. I will ring you over the weekend to see how you are.
Hi,
Sharon and Tracey gald to hear you are now half way through, well done. Hope the side effects are starting to wear off before too long. I am on 193 days done and 3 to go. Part excited and manic and part ‘I bet this is the worst one’ so up an down emotionally I guess, but mostly excited. Eyes are very blurry and got vertigo in matalan and had to come home befor I spent very much to cheer myself up! Looking forward to the dinner, just hangign on for the surgery date. Did you know we have a rads nurse who comes down to meet newbies? I thought that was a lovely idea except now I have another visit. I think you should have a scan to put your mind at rest. Everyone in our area has full scans so it seems mad for just you not to have them and they are not too bad. I will take you to one if I am free if that gets you there. Try not to panic as this is not a new pain and remember what your Mum said too, which I won’t repeat!! You gave me the 500 piece jigsaw if you remember and they are one nighters for me while on steroids. You should have taken the smaller one and had an easier challenge.
take care everyone.
lily x
Hi everyone!! I had ana awful experience on Friday with it taking 4 attempts to get a cannula in which they did do eventually in my “bad” arm. I was not too impressed but nurses did state they had done this before and as long as I had had no swelling in the past or over the next 3 weeks then they will use that arm again - don’t know how I feel but as long as the Dr states there are no major complications to this it is better than having a small op for a portacath seeing as it will only be for 2 sessions,
I did sleep much better on Friday and Saturday night mostly due to taking prescribed sleeping tablets and even slept 3 hours sat afternoon! SE’s not presenting themselves at mo just that slimy feeling in mouth from the anti sickness pills.
Lily, hope you manage to calm yourself down soon and try not to get into a panic on Tuesday - it will be soon be over and on to the next phase. I am looking forward to the meal as well so it may be just the four of us but still very enjoyable. I think we will try to get a lunch together prior to that as I know my friend is keen to meet you all. She is making a goos recovery from her lumpectomy and reduction and gets her results on Tuesday - fingers crossed for her.
Tracey, how you doing today - will phone you later
sounds like you are all keeping your spirits up-well one!!! Don’t tend to post as much these days but still dip in now and again to see how you all are.
I completely lost the plot the other day when I realised it’s been a whole year since I went for my first biopsy.What a year! MX and recon, chemo,rads and now I’ve started my Herceptin. Plus in between 2 more ops for portacath and patch up on tummy scar. Phew when you’re going through it it seems like it will never end but now I’m looking back thinking wow I did it! My hair is coming back now,like Rebecca said just like Sinead but without the beauty! Of all things I’m loosing my eyebrows which I held onto for so long but new growth is coming through-got to start shaping them soon! Nearly went out the other day without my wig until my daughter reminded me!
Still suffering with the arm,I have 2 sessions for the next 3 weeks booked at Rochelle house for the massage and seem to be a little light headed from the Herceptin.I’m on the ALLTO trial so getting lots of TLC from the Prof and a lovely research nurse called Sian- that includes phone calls to see if I’m ok!!!
Well must go,hubby and I are going Xmas shopping for a little while.Southend has a Xmas Bavarian market and farmer’s market in town this weekend so should be fun!
Hi,
Jen glad to hear from you and that you are obviously getting out and about more. I have had a research nurse right through this, I know your one too, so I know how much extra they put in. Mine comes to see me in the unit for every chemo, gets all my drugs and comes in to see the onc with me each time and is just always there, sorts my ops out with the surgeon,rads, the lot. I think they are possibly the most positive thing through all this if you can get on a trial, all down to luck at times though if you meet the criteria. I asked to go on a rads trial but can’t, not sure if you can be on 2 at the same time. Glad yours is helping you along through this bit too and good luck with the herceptin. Are you ok on it so far? Next job after the last chemo on Tues is an op to take the port out. Mine is trying to break out is yours? Anyway take care and well done for getting so far.
Sharon, so sorry to hear about the vein trouble, Bev used to get that and get relly upset, horrible and makes you feel very vulnerable. Some people have a tumour both sides and have no good side so there are plenty of people who use the bad side. I think it is more critical if you have lymphoedema but that doesn’t go so you don’t want to trigger that off. Personally I would make them try the other arm first but that will be up to how you feel next time. Also massage the arm along the line of the veins with arnica cream or vit E to help the veins in the weeks between, it may help. Do you know if you are hormone receptive or HER2+++. If you were not hormone receptive and were having herceptin for a year after this I would say have the port put in, but not for 2 doses of TAC though. You stay calm and hope the SE are not bad this time, they can build up a bit over the doses.
I am fine, quite excited as the last one went ok and enjoyed this weekend so far. My son has a football match at lunchtime so hope it either stops raining or buckets down so it is cancelled. Drizzling is just miserable and my car will be caked in mud! Off for bloods in the morning, chemo Tues morning, the prof Tues afternoon and the rads nurs Thurs so a busy week ahead. Will let you know re the dinner after Tues hopefully or when I get a date but yes yes meet up before then.
Take care everyone
Lily x
Hi,
hooray hooray hooray!!!1
Last chemo done, 196 days what a long haul. Feeling so excited to have got that bit done at last. It all went well on the day and just waiting for side effects to start but very bouncy on steroids as well as from the excitement. Only managed 4 gours sleep last night. The unit was so quiet that I finished early so had to sleep in the car until my meeting with the prof in the afternoon. That was after a big fried breakfast before going in and sausage and chips for lunch. You know I might miss that bit of going! The Prof was in great form and very chatty and said he was very impressed that I had stuck it out to the end. Siad my stats were likely to be 90% and he would be very surprised if he saw me again after all I had. I know it is just words and there are never any guarantees but it was so nice to hear and will help me to walk on back to normal life a lot easier. I am referred for suregery and waiting for the scary letter with a date on coming through the door. I meet a lady on Thursday from the Colchester rads unit for a friendly whats what chat before my planning date on 28 Nov. I am supposed to meet the Prof that day but it is a Friday and he only goes on a Tuesday so will have to get my nurse to sort that out for me. The he thinks I will start rads on 3 Dec ish as planned as long as surgeon gets going quickly. So I may finish this year as planned possibly. I am on Tamoxifen by asked to have the more expensive brand that has fewer side effects and lots less hot flushes apparently. I told him I had worked out that even 5 extra each day would be over 8,000 in 5 years and that it was perhaps all the ladies being put on Tamoxifen causing global warming! he thought it was hilarious and agreed so I hope it will be a good one for me. I switch tablets after 2 years most likely to an aromatase inhibitor when post menopausal. I found out that you have to be period free for 2 years before he classes you as post and you move on to the slightly more effective ones.
Hope you are all ok I have a really hard jigsaw set up for the steroid nights!
Can we meet next week or the one after?
Lily x
I am celebrating with you and also up at night!. Although my steroids finished sat night I still was up last nite for some considerable time. You must be elated getting over this bit and not much longer to go. I’m glad the Prof was chatty and gave you good news - I must have caught him on a bad day.
It would be great to meet up for lunch next week - wednesday as usual or when Bev can make it. Looking forward to seeing you all after the few days I have had where I have had no motivation, not felt myself and needing to sleep but am “normal” today whatever that is.
Well done to you Lily, I am so pleased and excited for you!! The Prof. is right, you have done very well and I admire you for it. Brilliant about the stats, the hormones and everything, it all sounds good. Love your cheeky comments to him about the hot flushes. Do you think Sharon and I should follow suit and see if we can get the same brand ha, ha.
Hope we will be able to meet up next week for lunch. We are now half way, so feel like we are getting somewhere!!
Off to Rochelle House soon if I don’t fall asleep again!!
Lily well done!!! I can assure you rads will be a doddle compared with the chemo! Just ask for loads of aqueous cream.
I’ll have to find out about Tamoxifen too.Suffering terrible hot flushes. As for the Herceptin,seems ok so far although couple of times felt a bit light headed but generally alright.My portacath was a little troublesome last time and after a couple of attempts left me quite bruised,by all accounts mine moves around more than usual.The unit has given me some numbing cream for next time. The scar on my neck has settled down nicely now and the tube doesn’t protrude so much now. Afriend of mine has had her’s removed and she said the ok was fine and not too much scarring.
I was REALLY naughty yesterday!! I went to see Mama Mia with some friends at lunch time --it’s not naughty I know but it just felt so indulgent!!! If you haven’t seen it girls,go it’s a real feel good film.I sang all the way through.It has given me a real boost today,I’ve been cooking cakes (for daughter’s school not me of course!) and playing CD’s -so loudly today-I haven’t felt like that for a long time.
Hi,
thanks everyone, still wide awake and only 4 hours sleep last night, so a real super trooper!!! Sharon we could have talked half the night! Have you got a jigsaw going to wear your brain out? When Bev and I were on the same insomnia we use to text on silent are you up, to chat and not wake the house up. By the way I also asked the Prof if he could start up a keep fit class for BC ladies through HR centre as gyms won’t take you without medical letters and also pointed out really hard for people who have had a mx as the prothesis on the scar or rads burn would be horrible. He thought it was so brilliant and couldn’t understand why he hadn’t thought of it himself (what is he like?) , so do you all fancy going when it starts? Thought they could also a bit of diet advice like the clubs have. If you fancy a bit of exercise before then, I have started a cyber bike ride/run/walk through France to try to get fit on my static exercise bike. All ladies and doge welcome, it is on chit chat.
Bev was off today so would Monday of next week be any good? If not we will meet anyway. Hope you are all ok and enjoy the meeting. I hope to come from next time so remind me nearer the date. Jen keep singing. I missed it due to unwell and eyes to made to watch but will buy the DVD when it is out. Still waiting to see Daniel Craig again but tummy would have me running out too often at present. Glad you got the cream, if you time it right you don’t even feel a stab at all. Waiting for the date to have my port out, yikes. Thanks for the reassuring comments about that and also the rads. Going to Colchester every day is a bit of a trek and with the car park too will eat up the cash I am sure.
take care everyone
Lily x
Went to get ready for the meeting and my bed just looked so inviting I thought I’d lay down for 10 mins before going out - oooops I just woke up!!! Had quite a busy day today with family coming round and not much rest, it just overwhelmed me - sorry I didn’t come, hope it was good and your friend enjoyed it Sharon. I had the most strange vivid dreams, like really weird!!! Now I’m starving and am having toast and cornflakes and can see I’ll be awake for a while yet!
Jen, it is lovely to hear you are feeling more upbeat and glad you enjoyed the film, I would really like to see it. Ask about different brand of Tamoxifen to see if helps with hot flushes. I am so impressed by you making cakes for school!! puts me to shame.
Well done Lily for asking Prof. about club for getting back to fitness, I would certainly come. Would like to join your cyber space exercise, not exactly sure what I have to do, does typing count as exercise? I wish. Will meet up next week, anyday okay with me at the mo, hope we can still have naughty desserts if I exercise twice as hard!!
Hi,
Tracey, great to hear from you and well done for sleeping through the meeting!! Sounds like me. Sharon I believe Bev ws planning to go so maybe you caught up again. I hope to go now chemo is done, it was always such bed timing for me being the day after chemo. My SE are coming in now, happily munching senna and custard cream biscuits, do you think the Fox and Raven would consider it for their new menu???
I can make next week but later would suit my stomach but I enjoy the company so will come anyway. No op date yet. the Colchester lady who comes to see us before rads planning was lovely and explained all. I meet Dr Pratt on Friday week, can’t wait!!! We only get 2 tatoos in our area apparently, less than the 9 some people have had.
You and Ralph can walk the distances, just look at chit chat and see if you want to join in. Just a fun, casual support thing to get started on a little exercise. little being the operative word for me especially!
Take care everyone
Lily x
Custard Creams and Senna hmmmm…can see that on the menu!! Lily if you would rather leave it to the week after thats fine with me. Hope the SE are not too bad for you, at least you can comfort yourself with the thought this will be the last time you have them. Dr. Pratt? I hope he isn’t!! sounds quite well organised with the rads and good we only get 2 tatoos.
I have been extremely tired this time, but eating like a horse. Had a bit of a squiffy tummy but not surprised the amount of food I’ve been feeding it. I can only do short walks with Ralph because of his elbow, suppose thats better than nothing. When I’m not too tired I do have a bit of a go with the housework, surely that must burn calories too. Guess I won’t seriously get into doing enough exercise until I have finished chemo and I;m sure I will be big as a house by then.
Well supposed to be very cold with possible snow this weekend, so maybe we could go skiing!! Alternatively I might be found by the fire in fluffy slippers with a good book!!
Hi,
well the senna has moved to immodium and colic, so not a very happy weekend. Still I keep saying it is the last one but boy has this got a sting in its tail. Have had to virtually starve to stay out the loo for more than half an hour. Then on Sat got a letter to say my op is on Wednesday - yikes super scared about that now. Not sur if more wooried about the op or having the runs still and the op too! To make matters worse that is the day of my daughter’s graduation, so now I will have to miss it, which I am so disappointed about. I said of course Dad will come to watch you but that then leaves me on my own! So our youngest dughter has been assigned take Mum to hospital duty and I hope I don’t need carrying or I will have to stay there! They have just sent a letter saying arrive at 8am and don’t eat after 7 but nothing about what they plan to do, type of anaesthetic, when I can go home, what to bring, nothing! I have not even seen the surgeon or had any checks. At least I have no scary details to worry over I suppose. Then on Friday I have rads planning and wondering about that and the tattoos with my newly sewn wound!
Tracey don’t think I manage lunch this week.LOL . What a rotten week.
Hope all of you had a much more well deseved happy weekend and hope to catch up the week after. I can now confirm that I am ok for the dinner. I think any evening is ok but prefer not Friday or weekend if poss
Lily x