Hi
just thought I would say hello as i am in the same area as you and Mr Inwang and Prof Davidson are my consultants too. I don’t know if one of you looks like me but I went for a routine CT scan today and all 4 members of the staff insisted I had been there before?? Are you on a trial? I am on the TACT2 trial.
Best wishes
Lily
hi Lily
Well small world! No sorry haven’t had a ct scan recently. I’m not on a trial just TAC chemo.I wasn’t asked about a trial either,although the prof mentioned a trial for the Herceptin I’l have. How’s it going though? Where do you stand with your treatment?
Are you happy with both consultants? I’m not due to see Mr Inwang until January.I suppose you met the same breast cancer nurses aswell-what did you think? I chatted mostly with Heidi,although to be quite honest she works part time and was never there when I phoned-so really I haven’t bothered.personnally I have gained more support from this website!!
Well I must go and put my feet up again,feeling washed out AGAIN! Speak soon Jennie xxx
Rebecca, talk about live girl!!! I am sooo envious I just have no energy for anything and I can’t taste a blooming thing! Good luck tomorrow-nearly there! xxx
Hi Lily, Hi Jennie!
Lily - small world! Hope you are getting on OK. As Jenn asks, how far are you on this nightmare journey?!! Like Jenn I am also on TAC not on a trial, but will have the 5 years Tamoxifen and Zoladex when I have finished. I had my scan in London so probably not me!
Had great day in London in spite of the trains. Delay there due to suicide on track, and delay on way back due to signals. Thank God I don’t commute any more. Fortunately had my friend on school pick up for coming out time and needed to call on her.
Yes, I think I am very lucky so far with the side effects, but I am far from over! I will probably have a really s–t time with the last 3! Will let you know…
Lots of love
Rebecca xxx
Hi there,
I am on 4 x epi and 4 x CMF, and I have the 4th epi next Tues 22nd. I have had all the doses on time so far (fingers crossed) but get really knocked out for a long weekend each time afterwards. Have managed to phone the emergency pager 3 times already!! Usually due to me either overeating or eating something yummy I shouldn’t. Really enjoying the good weeks as not working until this is all finished. I see Mr I in January too, which will be 9 months I think. I really like him, just the right mix of being positive but telling you everything you want to know too. I am signed over to Prof D and will see him very soon before changing to CMF. I have heard that he is really on the ball and tracks the trials all over, very clever with the % and maths apparently. As I am on a trial I get my own research nurse and she is brilliant. She is there for every treatment and has her own number for me to ring any time about anything. It is a good job because I have been forgotten by the other team of nurses completely. I also get all my prescriptions free because of the trial, which saves me a lot. I have a friend going through this locally as well and she has to pay for all hers.
How are you both feeling, you sound like you are upbeat and just getting on with it ? Just wondered where you are in your doses and do you have rads too. What a pain to go to Colchester every day. They have an enormous waiting list so I have nagged to be referred now and they have already logged me to start straight after the chemo. Another friend with BC has had a bad time at Colchester, so mostly the comparison has made ours seem really on the ball, few blips though. I agree this site is just amazing for support
really glad to find you on here
Lily x
hi Lily
I’m having my chemo at Broomfield.the Helen Rollanson centre and the care has been fantastic! It’s a lovely upbeat atmosphere and I have a lovely reflexology session thrown in! I’m like Rebecca having TAC chemo and have had 3 out of 6 sessions.I’m out of action for about a week,my worst side effects are the complete tiredness and lack of taste.This time I have actually been sick and quite nauseous.But I am learning now jus to listen to my body a bit more! A bit difficult with kids but hey!
I don’t have to have any rads at the moment but Herceptin for a year. Prof D did mention trials but to chat about it nearer the time.Last time I saw him I asked lots of questions including what are my survival chances.He put his head in his hands and said " why is it in this country the “c” word means the end?" I interpreted that as good news!!! But he was lovely and said if I have any other questions I can email him.Never did I think a consultant would be accessable-we will see!
I’ve been suffering with my arm (lymph nodes removed) and the unit did suggest I get in contact with Rochelle House.Have you heard of it? It’s meant to be lovely offering all sorts of alternative therapies.I’ll probably get in touch soon.
Anyway do you have any kids-maybe dreading the summer hols?? My daughter (7) finishes today so enjoying the last part of Phil n Fern before each morning is filled with Disney channel and the lounge is covered in Polly Pocket!
well look after yourself Lily , Jennie xxxx
Rebecca - thinking of you today x
Hi,
yup I am in HR unit as well and get reflexology every time while having my ears frozen off by the cold cap. I am back in on 22 July and then go to different timings, 2 weeks in and then 2 weeks off so might bump into one of you. Prof D likes to chat to my husband a lot so I always lose track of my questions. I am due to see him soon. Rochelle house is in Springfield next to the private hospital. I have only been to a fete there but my friend goes all the time for chats, counselling, reflexology, Bach flower remedies, etc and they have monthly meetings with the BC nurses too. You just give a donation if you can.
I have 4 kids but only the youngest who is 16 is at home betwen GCSEs and A levels. It has been great timing for him to be here and he goes to blood tests with me if I ask. Not much good for breakfast as he rarely gets up before I have lunch! He has been off since 19 June!! I have done my Polly Pocket days with 3 daughters, he is on the stage that I have to get him to turn off films that scare me!!! The stork sent us a darling Grandson unexpectedly, so I have jumped to Nanna very quickly and am enjoying Rory, Iggle Piggle and Bob the builder again!
Hope all goes well with both of you. Have you been to the ‘look good feel good’ course at Colchester yet?
Lily x
Hi Girls
A quickie after number 4 TAC yesterday. I was there for HOURS, but not too sure why it took longer. Ah well.
Well Jennie, as I said, things bound to not run so ‘smoothly’ for me as I have to have a blood transfusion next week as my red cells are coming down. Groan moan I said to the Prof, but he said - ‘ah it will give you more energy’. 6 hours of it on Wednesday - first day of school hols - thank God my mum is here! At least we can go away now for my birthday for 2 days on the 28th - hurrah!
I haven’t asked about survival, prognosis yet as too scared! I get the impression that stats are stats and you can’t predict I guess unless you are really bad and even then people can go on for years! I do love his approach though. I remember at our first meeting he said that after surgery 50% of people are probably cured, but that is too low, and will him ‘90% plus after treatment!’. We are very lucky to have him as our onc. Mmm, the word ‘lucky’ with BC…
OK, off to look up ‘blood tranfusions’ now on the forums…
Hope you are all OK
Rebecca xxx
Hi
I am so sorry to hear you need a transfusion. My mother in law had 3 units and each took 2 hours so I guess you are going to be well and truely topped up. I have heard that you really feel brilliant afterwards, so that will be good timing for the hols, apart from the actual day. Is it the Hb which is low or platelets? Just wondering how low you can go before they do a transfusion. My MIL did not seem to worry and had more than one, just the time sitting there to try to pass. Wish you were there on Tuesday when I am, I am always in for a minimum of 3 hours and could have gassed for all of it!!! Hope you are not too poorly with this dose too.
I have heard from many people that we are very lucky to have him too. He makes me laugh when he has the nurses scurrying around. He stood me up once at the clinic and then turned up unexpectedly and chatted for ages when I shouldn’t have even seen him that day at the hospital. They were trying to move him on but he was on great form, chatting away. I love the % you are quoting from him. Makes me wonder if I am brave enough to ask about mine. The trouble is you cannot forget what you are told and my safe figure might be above his.
You must both go to the ‘look good feel good’ course at Colchester. It is run by beauticians and I probably got more than £200 of cosmetics and creams, etc including a large bottle of Dior Pure Poison (sounds a bit like chemo, thinking about it !). I have a number to ring if you want it. Jennie when is your next TAC?
Anyway take care both of you and hope next week goes ok
Lily x
Hi there
Think I need it for the Hb which is 10.3 and they prefer it if it doesn’t go down below 10 which it may well do by the time of my next session. As long as I don’t have my chemo delayed - I don’t care!!
I am at Springfield being treated, but know what you mean about passing the time chatting.
Actually I have booked into the next session at Colchester in August - will definitely go now after hearing of all the goodies - thought it would just be a few! Ironic they give out ‘Pure Poison’ - that made me laugh!
I’m not going to ask him about my prognosis unless further down the line during a moment of madness I feel like it. Just getting through all this is enough. Roll on the end of the rads - by November I should be free… and then the Tamoxifen, Zoladex, etc etc. Joy.
I go to Rochelle House by the way once a week usually for reflexology. They also mix me up some Bach remedies. It is not what I was expecting - it is a bit like a beauty parlour - just sit and have a good gossip with the therapists!
Take care, and hope you are enjoying the sun while it lasts.
Rebeccaxxx
hi both of you!
Ahh Rebecca blood transfusion! Good luck I hope like Lily says,it gives you a boost.I can’t believe my blood results- my levels are going up on everything except my WBC! Strange I feel weaker in myself too!!!
It’s strange I was going to book up for the beauty thing myself! My hubby has offered to take me and look after the kids! As for Rochelle House,I must phone them as my arm has been quite bad and I’ve heard they do lymphatic drainage massage.I was advised that my husband can stay for a massage too as he needs caring for too!
It’s strange when it comes to prognosis,I asked but didn’t really want an answer anyway-blrrr brain a bit scrambled ehh? Lily,my next TAC is the 30th July.
Today was my first day out since my last chemo,the Friday before last.I just haven’t felt up to it.My tiredness has been worse and my mouth feels like sandpaper and food -well easier to just not bother! I think it’s alsobecause of my hospital incident and the last session a week later I had a panic attack.I’ve lost a bit of my confidence but today made up for it!! Only went to Tesco’s and mother in laws,but it was lovely getting out.Hubby had to hold my hand around Tesco’s,I was a nervous wreck! So I’m ready for the school hols-bring it on!!! I’ve even ordered £100 of Tesco “days out vouchers” so Colchester zoo here I come-lol : - )
Well going now to clean my teeth and get my daughter into bed now,so speak soon ttfn Jennie x
Hi,
Glad you are going on the look good thing. They won’t let anyone else in except the BC ladies by the way and I will say, I felt really young and I can tell I am older than you 2! You all go through a full make up regime and they dash round to help where needed. It is such a lovely thing to go to.
If you ever see a male therapist at Rochelle house it is probably my brother Geoff so say hi. I think they do lymph drainage but have not got round to going there yet. I didn’t know they sorted out hubbies!!!That is a nice thing to do.
Rebecca I have just checked my Hb and it is still above 10, so fingers crossed. I eat loads of eggs when yukk and they are good for the iron count, so will continue that and hope it helps.
When do you both finish your chemo? My trial is an 8 dose regime so I am in chemo until Nov, which is a bit depressing. Prof D said I could stop early as I got the longest arm on the trial but not sure whether I would feel safe stopping early. I will have to have a big chat with him to weigh the pros and cons up. Have you got your rads booked? I have a letter saying to call if I have not heard my planning date by end of Oct but start later than that.
Jennie I was sorry to hear that you had been feeling so anxious about going out and hope you can overcome it. The Zoo sounds like a lovely trip, I went about a fortnight ago, the new big enclosures are so much better and lovely to watch the animals. We watched the baby warthogs for ages who were acting like 3 year olds and racing round in circles and knocking each other over and squeeking. They were so hyperactive they could not stay on their feet. Hope you pick up now and have lots of fun before the next one. It was brave to overcome the supermarket trip, now keep taking little steps to build up your confidence gradually.
I am back in on Tuesday, so bloods tomorrow. Yukk.
Lily x
Hi,
Had epi 4 on Tuesday and it went ok. I am better than dose 3 at the moment but expecting the side effects to be with me when I wake up and being a slug on the sofa all weekend. I hate losing the weekend each time but used to it now I guess. Hope you are both ok, wondering if you have had the blood transfusion yet Rebecca and if so how it went. I am in chemo brain and cannot work much out at all sorry. Jenny hope you are on the mend now and coming back up again
Speak soon
Lily x
Hi girls
Lily - hope you are feeling a bit better - slowly but surely. This heat takes it out of you doesn’t it? Have just come in and whipped my wig off (kids out with my mum!) and it feels GREAT!
Jenn, hope you are enjoying your ‘good’ week and feeling a bit more confident out and about.
Yes, had blood transfusion on Wednesday and was very annoyed at having to spend another day there! Nurses were lovely though. The Prof was doing his chemo rounds and popped in. I told him I was really fed up as in my ‘normal’ life, I would have been flying to Spain on hols that day. He asked me why I hadn’t gone!!! He said I’ll be feeling myself by Christmas so I offered to take him out to see how my energy levels would be. I do feel better after the bloods I must say, so thank you to whoever donated it!
I haven’t had reflexology for a couple of weeks as I have had to cancel, and I am sure I am feeling worse for it emotionally. Spooky. Jenn, did you get your lymph massage sorted?
Well, off to enjoy the last moments of peace before the rabble return!
Love to you both
Rebecca xxx
Hi Rebecca and Jen,
how are you all? I have been really struggling in this heat and feel like a beached whale. Surviving on iced water and an electric fan and hoping for the storm they promised to cool me down. You obviously get much better tlc being private, as I have not seen the prof since starting chemo. I am apparently in hospital the day he does a clinic somewhere else,so he just asks how I am going, according to the nurse. I have my own nurse who is brilliant so she sorts everything out. I will see him the week after next before changing treatments and want a big chat about whether I still stick to the 8 treatments. it is depressing when people who are just starting will finish before me and I feel like I have been doing chemo for years already!! I am in that silly bit at the end of each dose when you don’t rationalise so well and cannot quite remember the fun you had last week! I do like to have a laugh and joke with the docs. Sorry you are not on hols this year. Will you get away at all? I am not sure whether I will but have offers of a cottage in Norfolk. It had to be the same time as my next treatment and as I am changing drugs it is difficult to predict dates that I will be ok.
Anyway well done for getting the transfusion done, you sound so positive, unlike me at the moment. I promise to be better soon and hope you are feeling the benefit of more energy. Jen hope you are still managing to get out a bit more. Keep trying, a little each day to build up your confidence
Lily x
hi girls!
the heat blrr! Actually iced water and a fan sounds good-have you tried a slice of lemon or lime too?! I’m in my last week of three where I feel nearly “normal” and I have managed to get out a little bit. When hubby finishes work I often ask him to take me to the shops etc, I’ve been walking to the post box with my daughter on her bike too just to keep me sane.Also this weekend we visited friends and we all had a lovely time!
As for sorting out my arm for the massage,what a pain! I have to be assessed by my nurse first before I can have the massage and she can’t se me until the 12th August! My hand is so bad now I can’t clench my fist properly and I’m quite restricted with what I can do.In the school hols it’s a bit awkward.Hey -ho!
Lily - I’m not private at all.I’ve only seen the prof ,firstly to consent to the chemo,then to check if I could go ahead after an op on my tummy and then a couple of months after my treatment started.I have an appointment to see him whem my chemo finishes too to discuss the Herceptin. I don’t think Rebecca is private either-but I may be wrong. I do have a nurse but to be quite honest I don’t really talk to her and the last time I saw her was before the chemo started.
Rebecca - can’t wait for my reflexology session on Thurs(next chemo) it’s true i’m sure it helps! If I remember right you are away at the moment for your birthday-well HAPPY BIRTHDAY! AND i HOPE YOU HAVE A FANTASTIC TIME.
I’m trying to get booked in to the Look good session in August now- a friend went last week and couldn’t stop talking about it! Perhaps see you there??!!
Well must go and put my feet up now.Saving my energy for the zoo on Wednesday-hmm? Not sure if I really want to go but at least the kids have done something this week before my treatment starts.
speak soon Jen x
Hi there girls
Thank God it is cooler!!! My two days away were fab - Aldeburgh is gorgeous well worth a visit. We were on the beach when there was a wind from hell - the childrens’ surf boards were like kites, but guess what? My wig stayed on! Bliss.
Just to say that I have gone privately, but certainly in Chelmsford there doesn’t seem to be too much difference between the care I have and that of people I know who go through Broomfield. Guess I get results quicker and do always see the Prof. Timing wise though (which is the important bit), don’t think there is much difference. Sounds trivial, but one of the best things is that I can walk to the hospital!
Lily, hope you have your treatment plan sorted. Must be hard having a choice as on the one hand you want it all over with, but on the other you want as much as you can to get rid of the bugger.
Jen, hope your hand a bit better. Sounds dreadful, and yes, 12th August is a long way away! I suppose everyone is off on their hols. As for reflexology, I had to cancel the last two, and I ran out of the Bach stuff, and whether coincidence or not I have been the most emotional so far this past fortnight since my diagnosis. I had another reflexology session yesterday and feel very positive today! Weird. Hope you got on OK on Wednesday? Another one OVER!!! I have number 5 a week today. Can’t wait - bring it on (let’s hope my bloods are OK!).
Right, off to bed now. Take care
Rebecca xxxx
Hi,
I started off in Springfield for my dx as they could see me the next day but the surgeon sent me straight back to the NHS when he found cancer cells, said this is too expensive now and got me in the next day for all the biopsies. By the time my NHS appointment came from the Gp, I had completed the lot and was waiting for my op. Someone told me that our area has won awards for BC care and is a centre of excellence. Certainly I see the same nurses, onc, surgeon, radiologist but I bet you get better food!!! We have to bring our own rolls or buy them there!
Jenny that must be frustrating having to wait so long. Perhaps you could post on here and someone will teall you some exercises they give you to start. How was the zoo trio? Cannot remember what the weather was like that day either. I have been really struggling with my gastro intestinal tube - both ends of it! So annoying. How are you feeling after your last dose? Hope it went well and not to terrible in this hot weather.
Rebecca lucky you I love Southwold and Aldeburgh. I was interested that you get so much from the alternative therapies. I love the reflexology but it is the actual tlc and attention that I like and have not found any difference beyond that. Probably because my feet are too tough! I have been very emotional too. I am not sure why, whether it is because I am half way or getting fed up of increasingly tough side effects at the moment. Anyway i think it is good to have a boo and let out the stress. I have number 5 a week on Tuesday.
Take care
Lily x
Hi girls!
Rebecca I am sooo pleased you had a lovely time.I did’nt bother going private-at the beginning everything seemed so surreal,perhaps I was one of those that thought it would be happening to somebody else not me??!! But I agree with you Lily I have heard that our area is a centre of excellence and because of that I don’t mind bringing my rolls now! We don’t pay for the parking now either as the unit has parking for chemo users.
I am so glad the weather is cooler now,but unfortunately this time round I seem to be having quite a few hot flushes.No period though- good thing I think? It gets a bit embarrassing but luckily I’ve been at home most of the time. Well my hand has calmed down a bit now although the chemo does tend to start it off again,so I’ll see how it goes.I’m just going through the " blrr" stage at the moment so forgive me if I waffle or spell wrongly.
Well I think we are all doing very well- no 5!!! I rememeber thinking no 1-blrrrr! We can do it girls!!!
Must sleep speak sonn Jen x
Hiya
Well done for getting to the computer Jenn!
Oh, hot flushes - haven’t had those yet but I know I will be soon… My recon scars go really inflamed just after chemo - do yours? It is odd.
I love this week as I almost forget that I have (had??) cancer as no pills, etc etc. Then reality strikes. Grrrr
As you and Lily say, this is the best place to get BC for treatment, private or NHS. I only went private because my husband has the policy through work and Springfield is local. I can’t believe how much it has all cost so far - unbelievable.
Yes, number 5 next for the three of us - hurrah! Mind you, I am going back to work 4 days after my last chemo, and that isn’t far off now, so I need to do a bit of ‘work’ (am teacher so need to prepare a bit so that when I go back and am feeling knackered at least I am prepared!). Must be mad, but it gives me a focus other than all this c–p going on in my life.
One of my very close friends has had a terrible week as her hubbie has admitted to an affair and has left leaving her with her two young children. This has taken the focus away from me in our group of friends and we are all trying to help her through it as her life has fallen apart at the seams. Competely different experience from what I am going through but as devastating for her after 18 years together. I hate what has happened but it is ‘nice’ for me to be able to help someone else in their time of need instead of it being all about me which is what I have felt among my fab friends over the last 7 months.
Anyway, hope you are both OK. Not long Jenn until our pampering session at Colchester!
Love
Rebecca xxx
Hi,
what a pleasure to read your posts all cheery. I am having big problems this time as no 4 has attacked my Gi tubes badly and will probably delay number 5 as far from better. I wen into this one not quite right and it tipped the balance. Had to phoone the emergence number on Sunday and sent out to buy medication. I have to talk to them tomorrow and may have to go in to a clinic on Tues as a precaution. They are also mentioning reducing my dose now. Big meeting with the onc on Thursday, which is good timing. Picking up each day but not fast enough for a dose in the next 2 weeks in a row.
Rebecca I can’t believe you are going back to work so soon! Are you normally better on day 5? I am seriously impressed if you can manage that, you must be built of steel. I had a lumpectomy so have to go on to rads, and off work until the new year. I am a teacher too. Are you primary or secondary? I was sorry to hear of your friend but totally understand what you mean. I went to a dinner party and could not get the subject off BC.
Jenny hope the hand and the hot flushes are both improving. people tell me they are horrible. I have not had any, not sure which side of menopause I am but either way none, sure they are coming though! Are you coming to the last but one too? How brilliant. I am down for 8 plus rads so will be on treatment for some time
Lots of luck you both deserve it
Lily x