Hi
Rebecca I’m so sorry to hear you are unwell. Have you remembered all the things you can’t do on chemo carry on for 3 weeks after the last dose, so you need to be very careful, especially with any over the counter remedies. I hope you feel much better soon and don’t rush back or you will struggle to fight it off. I knew schools were germy places!!! Oh poor you when you were trying so hard to get back to normal. I don’t get to rads until I finish chemo, which is towards the end of November,so ages and 6 more doses before then. What a slog!
Jen have you had the last one yet? Hoping your hand is improving. CMF makes you retain water and my wedding ring is really tight but not taking it off. Did you say you are having rads? If so do you have a planning date yet? I am alittle anxious about the tatoos.
Moonshine I guess the house is quieter but in a way it is harder when they are at school as you have to be at the gate at definite times each day. I think it is today that you have surgery again, so thinking of you and hope the healing process doesn’t take too long. It is getting over the anaesthetic with me that is most annoying. Hope they took you down early so you did not have the long anxious wait. Hopefully when you read this, it will be another thing finished at least, so you can concentrate on getting better and out and about. Tell Olly I said to make you a cup of tea when he gets in each day.Good luck.
Best wishes to all of you
Lily x
Sorry to hear you are unwell Rebecca, it’s difficult to keep away from germs in school, have warned mine not to bring any home!! Hope you feel better soon. Well had my re-exision at 8.30 this morning. A totally different experience to last time, came round in Recovery Room screaming for my husband, poor young nurse running round looking for him, was all a bit hideous really. Womens ward side was full, so spent day in the mens (only woman) which didn’t help. Prof. has warned me that if all not clear this time it will be mx. Am in much more pain this time, shovelling down co-codamol so will probably be requiring laxatives soon. Lily, that lovely Olly made me a cup of tea when I came home, had beautiful flowers for me and pillows and my ‘comfy fleece throw’ all on settee ready, don’t know what I’d do without him. Girls made dinner AND loaded dishwasher!! Was their Dad’s birthday yesterday and has been a difficult week all in all. Sharon is coming round next week for coffee, anyone of you is more than welcome, if not the offer is always there. Hopefully, I will be a bit brighter by then, though now back to the 2 week results wait!!
Off to bed now, sure all will seem better in the morning.
Tracey xx
Hi moonshine,
Wow you are doing well to be back on here already. Thank you for letting us know and everything is crossed that the margins are clear this time, so you can move on to the next part. I never doubted Olly and the girls too, must be a wonderful support to you, especially as it is a tricky time with special dates. I was upset for you that this is so much harder without your dear husband for support. I didn’t think they could put you in with the men now, that was one more thing to put up with, that you didn’t need. I would love to meet up with you and Sharon but it depends how I am, it does not look too hopeful. I have chemo on the next 2 Tuesdays and that is when my eyes start to be a problem to drive anywhere, especially through the army and navy. Also they are adding piriton to my treatment and I can see from other posts that it knocks you out! I never know how anything new will affect me. Send me a message when and I will get back to you.
Glad to hear you sounding chirpy but remember to really rest and look after yourself. If I can’t come this time, can I please be rude and ask to come another time?
Love
Lily x
hi everyone!
thought i would say a few words as it’s my last chemo tomorrow and the steroids are keeping me alert!!! Plus I probably won’t write much over the next few days!!
Tracey look after yourself and take it easy-it’s lovely to hear that your damily are looking after you. It’s awlful but I 've taken to watching Jeremy Kyle in the mornings usually I can’t stand it but it always puts a smile on my face at the end of the programme.Wrong I know but some people!!! And Mr.Kyle loves himself ,I’m surprised his head fits through the door!-sorry but try it and let me know?
Rebecca I’m sorry about your chest infection,it’s awlful I know.I’ve just got over a cold and that is bad enough when you are so tired. It still is early days so take it easy! I’ve also had pleurisy in the past where i rushed back to work to quick- I learnt my lesson the hard way!!! Have lots of lemon and honey (drop of whisky perhaps-medicinal of course -ha ha!)
Lily - I know what you mean about the eyes! mine stick together quite easily where they are so dry.I’ve been given eye drops which help.As for Piriton-can you get a non drowsy version like some cold remedies? good luck anyway
Well thought I would tell you all about my yucky day.I had an appointment with the prof to discuss what happens next after chemo.Previously I thought I would be having Herceptin for a year-simple as that. We discussed my case and said I was doing well but he is not happy with the lymphodema (I cannot clench my fist very well and my grip is useless.) I am to contact Rochelle house to ask for Maual massage,overiding the lymphatic nurse’s decision.Then I asked why I am not having radiotherapy.He looked at my notes and said “hmmm yes you should be”.Imagine my surprise!! If I hadn’t asked would they have realised??? I cried of course- I said to him “I just want a break”. Well Professor Davison does not give breaks.We went on then to discuss Herceptin trials.I will probably do it. I have alot of reading to do!
After that I came home for a couple of hours,then an appointment with my GP for sick note,rush home for dinner and meeting at my daughter’s school. I’ve had enough today!!!
do you feel like you are on a really boring merry go round and you just want to shout STOP I want to get off!!!
night night from a wide awake Jen x
Hi wide awake Jen,
Just spotted this and writing before I go to bed at 1am. That comment about the rads is shocking. I am shaken by it too as had believed he was really on the ball. I have wondered every now and again whether i should have had a second opinion but it is such a rush when it starts and so may tests and appointments to fit in, without more. It is so tough to get to Colchester every day, I hope I will be able to drive myself through that part. So sorry to also hear about the lymphoedema. Crikey that sounds like a wrestling match!! What do they do?
Not sure whether there is a non drowsy version, he just said I’ll give you a shot of piriton. Hope it is not a shot in the arm!
Congratulations on getting to the last one, I am so pleased for you but green with envy. I know you get rotten side effects but remember you don’t have to repeat any of these days again. Look forward to hearing you cheer it is done and then you can get off that roundabout.Trouble is they put you on another ride after that! What are the herceptin trials about? Hope they referred you for rads straight away, as there has been a big wait earlier in the year
Keep smiling if you can and big hug for tomorrow.
Lily x
Oh girls
So much news when you come back from the bed/sofa!
Where to start? Alphabetically (a teacher, moi??)
Jenn, you will be in that lovely chemo planet as I type. Just think, that is it! I hope you are not feeling too hideous. Thank God we ‘spoke’ on this forum regarding the Rads! Bless him, he did the same with my friend and her Zoladex injections. I think he is so swamped with patients… (no excuse I know). I did think it strange as he throws the book at us youngsters, and it is to do what they chemo doesn’t with dormant cells, alledgedly. Just think, the sooner it is over, the better it is. I too am absolutely fed up with the lot of it and was feeling so useless I just cried and cried yesterday.
Lily - what is the problem with your eyes? Dry or runny? I had runny and anti hists didn’t help, but they did give me one to ‘moisturise’ the eye, but can’t remember what that is called. Poor you - not great when you are driving, especially when surrounded by all the idiots who regard the Army and Navy as Brands Hatch… As for the rads, just keep on going - I know it is a slog. The few people I know who have been through this all finished some months ago, so I am so grateful to this thread as we are all more or less on the same track. As for the tattoos, it isn’t so bad. One is a bit worse than the others (I had 3) - best to describe it as a lit match touching your skin for a nano second. Do try and relax as I imagine it would be very painful if you jumped and they would have to do it again!
Tracey, you sound as if you doing fine after the initial dramatics! I am sure he wouldn’t have given you a second lumpectomy if he didn’t think he could get it all. Fingers crossed, and more damn waiting hey? Must have been a hard week for you and your family. I guess they say it gets better??? Not sure about that, you just deal with it a bit better. A little like this sodding illness, but I am not dealing with it at the moment!
Well, take care lovelies
Rebeccaxxxx
Hi Rebecca,
I just lost my long post and tired so sorry will be quick. How is your chest infection now? Don’t rush back to work, you still need to take care of yourself, the school won’t worry. So sorry to hear you cried, all a bit too much and sometimes people are mean to you in schools aren’t they? Hope you feel more cheerful very soon.
I get the idea about the tattoos and think I can just about manage that but very near the more sensitive parts. Ouch. My eyes are dripping out the corners but also my focusing has gone mad for a number of days each time. I cannot read very small print and I don’t normally wear glaasses except to drive. However I can now see long distances as well with glasses as without. My brain can’t keep up with it all changing !
Big hug
Lily x
Hi Lily,Moonshine, rebeccag and anyone else from Chelmsford! Is this our own netwok. Now I am going to be starting chemo soon thought I would come down to these threads. Any advice would be greatfully recieved. I need to go and get breakfast for son but will be back later.
Hope you al have a good day Sharon xx
Hi sharon,
I posted somewhere else too, I was in the chemo unit today and back in next Tuesday too. If you get Tuesdays I will bump into you some weeks as I go 2 weeks out of every 4 from now until November. They are very nice in there but sometimes like today you get a wait, which I hate. Sat in the waiting room for an hour today to see the doctor, not usually like that. If you go on a day when there is a clinic in the hospital you have to go there first and I believe see the Prof each time. I did this once and waited hours, not sure if that was typical though. Sorry you need chemo but it will make a big difference, increaes your chances by one third more and it feels good to know that something is going round zapping the Cs. Hope your side effects are minimal, some lucky devils get none, but all are do-able.
Lily x
Hi Lily, thanks for your ongoing support. I go next Wednesday for the pre assessment and start on the 30th and was told 1st session can be up to 5 hours as they go slowly to try and avoid any adverse reactions. I am not looking forward to it but remain positive (at the mo!!)
Have you had any side effects? are you on the TAc regime I can’t remember
If you are feeling not too bad mon,thurs or fri next week it would be nice to meet up? just let me know
Have a good day sharon xx
Hi everyone,
Rebecca are you feeling any better. You have gone quiet so I am guessing you have struggled back to work and are under a pile of marking! I don’t miss that part too much. Hope your chest has impoved.
Jen how is your hand and have you had your last dose yet? Hoping to hear that is in and that you are getting back to the surface soon.
Moonshine sending you best wishes, I have totally forgotten where you are in the treatment, sorry this 5FU drug destroys my memory! I think you are recovering from second surgery so are you waiting for results now or have they told you what is next?
Sharon, I will be sorry to miss you next week at the unit by one day. I am not on TAC so can’t advise but there are lots of threads on here. The thing to remember is that everyone reacts so differently, just don’t plan too much for the days afterwards so you can lie on the sofa if you need to. My effects always start after about 4 days for some reason.
I have another dose next week too but think I would be ok to meet up and would certainly love to meet you. What about Monday, I only have to go to have my blood taken in the morning but can go whenever I want. I get some kind of vertigo in wide open spaces on this treatment and this will be in the middle of the 2 doses so can we meet where I can not drive far and just go straight in rather than in the high street? Anyone else free please say.
Love to everyone
Lily x
Hi all
Yes, Lily, went back to school today! Better thanks, but not fully recovered. I was supposed to have my nipple reconstruction yesterday, and there I was, in the Nuffield, all gowned up and marked, and then when the Consultant found out I start Radiotherapy next week, he said he wouldn’t do it as I wouldn’t be healed.! He knew I was starting it next week… Very long history to this, which I won’t bore you with, but I was LIVID. Apart from anything else, to be in a sodding hospital when nothing was going to happen was enough to send me over the edge. Anyway, work took my mind off it today, so it does have its advantages!
Jenn and Tracey - how are you doing?
Hi Sharon, I just finished TAC and Jennie also. As Lily said, it is difficult to predict how it is going to affect you. I was quite lucky and didn’t suffer from much at all. It is extremely tiring though. So the advice is rest rest rest when you get the chance. I have two young children, so easier said than done.
Day off tomorrow, but I have to take my 8 year old to have her tooth out in the morning…
Bye
Rebecca xxxx
Hi Lily , Monday sounds good to me.if you want to ring and suggest somewhere that is great.
Hi Rebecca, I know what you mean about it being hard to rest with young ones I have a 7 year old, bless him but I will heed your advice and rest as much as I can. Are you having rads after or hormone therapy?? I will have to.
Moonshine, it was good to meet ypou at the meeting tonite and hope you did not find it too intimidating it really is a nice group. See you tomorrow
Love n hugs Sharon xx
Hi All,
Glad to hear you are all okay (ish) Must of been so frustrating for you wasting time at the hospital for reconstruction Rebecca, do they like to push to the limit? Glad to hear you are over the worst of the chest infection though.
Sharon it was lovely to meet you too. I didn’t find the group at all intimidating, infact I thought it was very friendly and casual, and very positive, not at all depressing as I had feared. I thought you were so brave modelling all the scarves and hair pieces, and have to say they looked really good!
Lily, you are quite welcome to join Sharon round mine tomorrow for a cuppa, but quite understand if it’s not convenient and the offer remains open anytime you are up to it. That applies to all of you, Sharon can give you my address or I will pm it or something.
Take care everyone,
Tracey xx
Hi,
I am disappointed that I was not up to the meeting but just had chemo yesterday. It sounds like you had a good time too. Sorry I cannot make it tomorrow as have already arranged to see another BC friend, that is if my eyes are up to it and can only do small amounts at this stage or it goes completely. Difficult to plan ahead until you know what you will be like on a new drug. On epi I just planned going out for week 2 and 3 and knew I would be ok. Going 2 weeks in a row is much trickier as it accumulates faster and the blurry eyes grrrrrr. Moonshine do you know whether you are having chemo yet, I am not sure whether you said. I hope you are feeling much better after the surgery and other things. Please put that cuppa on hold for me. How about Monday for you too?
How about the Fox and Raven which is usually quiet and lots of seats about 12ish on Monday? Any takers?
Rebecca, how frustrating to be that far away and all ready, when they pull the plug. I would have been tempted to say keep going and delay rads, or is that not wise? It sounds a bit of a tricky operation, what do they do? I have to have a little more surgery but that will be to take the port out probably before rads so I ought to think about that being healed too. I have now been prescribed liquid replacement saliva for my dry mouth, how yukky does that sound. I went into the unit laughing like a horse with my hubby as I said he would have to try it first and then we decided it would have to be the dog!! Can you imagine how much he would dribble!! I also have liquid tears for my gritty eyes. A laugh really as I also have fluid retention. I wish all this fluid would just sort itself out and go to the correct place in the correct quantity!!
Take care everyone, hi Jen
Lily x
HI Lily Fox and RAven sounds good to me. See you there
Sharon xx
Hi All,
Have got appointment at clinic for results at 10 on monday. Should be back in time, so hopefully will see you there.
Tracey x
Hi for those meeting Mon for lunch could we make it 1pm as I have just been summoned for bone scan and have been tol I should be finished by 12.30ish.
Hope this is poss if not you meet and I will join you when I get there.
Love sharon xx
hi girls!
I’m coming back from those dark first couple of days of chemo- and yeah it was my last one!!! It’s strange though I thought I would be ecstatic but now I’m thinking what’s next? I did ask the Prof for a break but I he just looked at me in his way and I knew the answer! Now I’m just waiting for an appointment for radiotherapy-that’s the bit I’m still cross about.All this time I just thought Herceptin next and grrrrr! I can’t believe they were so laid back in fact anymore and they would have fallen over. Anyway breath! I’ve starting planning for the future a bit now- hubby doesn’t know what’s hit him- decorating,etc -ha! ha!
Rebecca- what!!! I think at the beginning we would just go along with things and put our full trust and judgement in them - now when we feel strong enough to move on-again grrr!!! Nipple reconstruction ehhh? I’m putting mine off till next year - waiting till the Herceptin has finished. You mention your friend with the Zoladex,well I haven’t mentioned that to the docs yet,but already I know the response -“well yeah we suppose you should have that” - not that I’m still cross! I thought you had started the r’therapy or was it just the " markers" done? Perhaps we should think about changing threads now?
Lily - you poor thing,replacement saliva? I can only imagine.My mouth is so dry with chemo though- my mum bought me some lovely Maynards sour sweets,they have really helped.Only instantly mind you,so I had to finish the bag! If you try them though don’t let the dog near them though!
Sharon good luck with the chemo.Rebecca and I have been through the TAC regime and at first we both wondered how we were going to get to the end. I agree with what’s been said Rest rest rest! Some ladies have said it’s acculmaltive(not sure of the spelling!) and I would say that’s the tiredness bit. I have 2 kids, 13 son and 7 daughter,its tough but just remember to enjoy your good days.
Tracey hope you are ok.
well off for a nice tasteless sarnie-although peanut butter is good!
Jen x
Hi
Jen wow well done for getting through the course,hooooooray,
People are finishing all round me. I am so glad for you all, but green with envy, sounds so lovely. I take that back as I forgot you have to do another long shift with herceptin next. Watch the dates, if there is still a long wait for rads, as I believe herceptin must be started within a certain time from chemo finishing, but it was months not weeks. Hope the side effects of this one do not hang around for too long. Have you started the lymph treatment yet? Still struggling to take in your lack of rads planning. I had my letter from them months ago, nothing technical just said please ring if you have not been give an appointment by Nov.
I have not had a chance to try out the replacement saliva stuff, that is assuming I am brave enough when I see and smell it, very easily put off medicines ! it was out of stock and by the time they rang me days later, I wasn’t sure I was up to driving there on my own and then straight back again.They would not post it either. I have been finding that a mild mint chewing gum is really helpful but not for too long. Easy to keep handy though. Enjoy the peanut butter and hope you get your planning date very soon.
Sharon and Moonshine I was going to say can I check on line to see if you are coming or in case I am not well but you will be in hospital. Can we confirm this Sunday evening? Sharon the bone scan works quickly if you walk around and drink. You will be radioactive so we will have to keep away from pregnant Mums and small children!! I fell asleep when that was being done and woke up with the flat surface of the scanner right over my nose, made me jump.The injection is small though and it passes over you rather than you going into a tube, not much to it really.
So one in the Fox and Raven on Monday, waiting by the bar? I will be the short one with not much hair. LOL. Moonshine hope your results are as good as possible, will be thinking of you. I hate results days. Rebecca hope you are over your disappointment, unbelievable.
Love
Lily x