Thanks
We had a great day, the bouncy castle got a good battering - not like last year, rained all day!
Hoping they can find a vein tomorrow, don’t fancy the sound of the Hickman line, you’d think they’d at least give it a nice name wouldn’t you?
Hope all your pre-ops went ok and hope you have a fantastic weekend with the family - you deserve it. Fingers crossed for the weather!!
Take care
Alison
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Hi Alison
Hope today went as well as it could and you are not too bad. Please please put plenty of moisturiser on yur arms - try to keep the veins supple (sp?) before they get too bad. The tightening of my veins is painful and now one of the few legacies left, so try to prevent this.
Pre-op etc went well, I am booked in for Tuesday afternoon list. Means we get time to take kids to nursery in morning, but will have the long wait. There never would be a good time I guess.
Weekend will be a blurr as we have 2 kiddies parties and my mum and dad on Sunday.
Hope people are looking after you and your family this weekend.
Take care
Jane
Jane
Thanks for the advice on the veins, I’ve never heard about moisturising before to help. They got it in 1st go today so that was a relief.
Got there though and my bloods were low, had another blood test and levels had recovered since yesterday.
Went ok, nausea kicking in now but to be expected.
The nurses said I’m doing really well to hang on to so much hair - ironic how I can’t wait to get it all off. Itching getting on my nerves. Might do away with it tomorrow.
Hope you manage to get some quality family time this weekend - got help with kids now til Thursday so by Friday I should be up to coping with them on my own. Just got to hope I don’t get any infections this time!!
Ta ta
Alison
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Jane
Just in case I don’t get chance tomorrow just wanted to say all the best for Tuesday - hope you are out pretty soon, back home where you belong. Hope too that the children are ok - mine weren’t too bad, it helped when they came to visit me in hospital, helped them visualise where I was - and know that I was still around!
We shaved my head yesterday. Kids (& hubby & I) took it well. It looks quite cool actually. Going to get the face paints out when it goes completely, have a bit of fun with it. Wigs, scarves and hats at the ready for when I face the big bad world.
All the best for next week. I look forward to hearing how it all went when you’re up to it.
Take care - big cyber hugs
Alison
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Hi Alison
Counting down the hrs. Feel I should be doing something profound - but then dont want to treat it like it is the end of the world.
OH “neatened” up my hair so its half inch all over - whats left. Doesnt look 2 bad (better than his anyway !) and bits are already growing back.
Heard about the state of the hospital kitchens - so going out for nice meal tonight.
Little boy heading off to Grandmas to be spoiled and baby girl to Aunties. OH looking forward to s couple of good nights sleep ! So all practical things taken care of.
Will even have time to iron my PJs tommorrow
Hope you recovering from round 2 - walking out into the world with a scarf/wig on for the 1st time is hard, theres no doubt, I cant say I am used to it but you cant let it get in the way of plans, outings etc. Atleast you havent got you skirt tucked in your knickers.
Many thanks for your messages - look forward to catching up again soon
Jane
Hi Alison
I am home. Still with drain - I can confirm I aint swinging it and its agony.
Nerve under my arm was cut so its all very numb and surreal to tell whats going on, what I can and cant move etc. Nerve damage shouoldnt hinder me functionally it will just feel strange. Hopefully when things calm down a bit I can assess thingsa bit better. Meantime, kids away so I should enjoy some peace and quiet. Started some good books and have a stack of DVDs.
Hope you having a good midweek
Take care
Jane
Jane
How great to hear from you so soon. I’m so pleased that you are home even if it’s with the blasted drain - I hated mine every minute it was in. Such a relief when it eventually comes out though.
I know what you mean about the numbness. I still have a lot of that under my arm and around my shoulder but like you say it doesn’t stop you doing anything.
How do you feel emotionally about it now that it’s done? I supposed you are just glad the tumour’s out - I think that’s the big step.
Take plenty of rest (while you can) and I hope you get some nice time with your OH.
Alison
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Hi Alison
How you doing ? Hope you enjoying some “good health”.
Drain still in and clearing 50ml/day so wont be out for another couiple of days. Getting used to it now and bundled it up in a bag and coat so me an OH could venture out for lunch. With the hat for baldy head, coat for drain and the painkillers it was a weird experience but good to get out.
I am relieved to get rid of the tumour at last and that is the feeling I have to keep in touch with. As the pain subsides I am worrying about life with 1 breast, the prosthesis I have does look OK, just still painfull to wear a bra, but this will get easier. The surgeon left a lot of skin, its like a deflated balloon, but this is for a reconstruction. After the pain of this surgery you could be in 2 minds about a re-con, but as hes now left the skin, Ill follow through in about a yrs time.
We are getting lots of sleep - its such a good healer.
Good to hear your numbness doesnt stop you doing anything.
Hope you are rubbing moisturiser into you arms, about 2-3 FEC my arms got sore due to vein tightening and was really worried they would just get worse and worse but found moisturiser and volterol gel helped to stop them getting worse in the last sessions. I really hope you havent sufferred this and try to prevent it with any kind of moisturiser on them.
Managed to play a bit with baby girl when she got back from nursery, she can really sit up well now which is great so I can sit and play with her. Little boy still at grandmas being spoiled. They took him to “toys for me” (he doesnt like to call it for us) today so he should last a few more days there.
OH cooking tea, I`m watching the soaps, then we have to decide which box of chocolates to open ! Life is getting better.
Hope the weather is OK leicester way, we avoided the rain today
Take care
Jane
Jane said leicester way who is being treated in leic??? sorry to hijack but I am being treated at leic and would welcome any info and feedback many thanks LJ xxx
Loubyjane, That’ll be me, Alison. What treatment stage are you at? I’ve had WLE at Glenfield (dx is grade 2, stage , lobular, no node involement) and am now on 2 of 6 FEC chemo at LRI.
Jane, you are so amazing. I couldn’t have dreamt going home with my drain let alone out for lunch!! You are made of strong stuff.
I’m feeling really good at the moment, almost normal!
Been out a few times shopping in wigs - 1st time I was so anxious. Just felt like EVERYONE was looking at my hair saying “WIG!” but of course they weren’t. Have got used to the feeling of having it on now and the kids love it. I was in a changing room trying on clothes with my daughter and at the top of her voice said “Do you have to take your wig off to try that on Mummy”, after I shushed her I thought “who am I trying to kid??!!”. My boy, a big 2 now, keeps pointing at my wig saying “Hair”, NOTE TO SELF - Don’t teach the 2 yr old the word “WIG”
Hubby keeps saying I look better without anything on my head - I’m so glad (and relieved) that he’s not freaked out by it. Think he quite likes it in a funny sort of a way.
My side effects from my 2nd FEC have been minimal. Nausea about the same as with 1st FEC but I’m not half as tired and have had no mouth sores. Mind you as you know with my 1st cylcle I had a heavy cold, excrutiating sore throat & a gum infection - plus had child with chicken pox to nurse - so this one had to be better really! It’s such a relief to know that they’re not all necessarily going to be as bad as that 1st one.
Yes I am moisturising a lot, thanks to your advice. With both chemo cycles my arm where I had my lymph removal surgery has been really rather painful. Not sure if it’s the vein tightening you mentioned or whether it’s just because it’s still a vulnerable area and chemo shows no mercy!
Took kids shopping today and went to McDonalds for lunch, I had the best time. Funny how something so ordinary these days can be so special.
Only 2 weeks til daughter starts school - boo hoo hoo. Am looking forward to some quality time with son then though so every cloud n all that…
Hope the drain’s out soon. Mine took 5 days so hopefully yours won’t be long now.
Take it easy
Alison
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Alison
I am waiting for a operation …who is your consultant mine is dzumner spelling is probably wrong!! I don’t know exactly what I have please read my threads on “HAVE I GOT BREAST CANCER” discussion “what have I got” and then Loubyjane and clairep36 as these are better to read than for me to list what has happened here I am finding it hard getting any info from the clinic and as they seem so busy and under pressure I have to wait till he is back from his un planned holiday whatever that means …
any info help etc greatfully appreciated
many thanks lots of love LJ
Hi Loubyjane
My consultant is Windle - he’s very caring and approachable, even phoned me at home to make sure I understood everything. I’m not familiar with the treatment you are having but if you are not sure what’s happening to you I would phone the Breast Care Nurses at Glenfield and explain how you feel and they should be able to help. They are there for you and if they can’t help you directly then they will refer you to someone who can. I have phoned them a number of times over little worries and they never make me feel that I’m wasting their time.
I think I read in your thread that your consultant speaks in broken English. There’s nothing worse when they are talking about YOUR health. You tend not to ask anymore quiestions for fear that you won’t understand the answers. Hopefully the BCNs can “translate” for you.
Else I’d go to your GP - Surgery is no minor thing and it’s your right to know what’s happening to you and why.
Good luck
Thanks mammabee! I will ring them but how?? which dept do I ring?
Hi LoubyJane
I was treated at Burton so little things might be different. However, I can emphasise what Alison is saying. I have found ringing a huge relief. Also that the GP angle is also really helpful. After my diagnosis at the clinic I never went back to my GP and waited at home for info, results, appointments etc came home never quite having asked what I`d wanted - despite everybody being so nice. Went to GP to ask about babies vaccinations vs chemo timing and found him a huge help in all other ways. He just went through everything with me - he had a copy of all my results/details from the consultants and also explained that he was happy to find out info for me, check up on results and talk in general. It was like a weight lifted from my shoulders.
Take care
Jane
Hi Alison
Glad to hear round 2 isnt as bad as round 1, seem to remember my round 1 was horrific with tummy bugs all around. Everyone had the runs and I was constipated !
With the kids on board you cant hide away, kid anybody, or sulk. Not such a bad thing, good for you for getting out with the wig. Kids in cvhanging rooms and toilets come out with some great phrases - I am sure a wig comment is less embaressing than being asked at top iof their voices if you are doing a pooh. Trying to pee and keep their hands out of the sanitry towel bin should be on the krypton factor (showing my age now).
Thank god for McDs. I have sat many an hr clutching the baby while 3 yr old systematically tkes out every crayon etc. Ikea cafe runs a close 2nd - on a none busy day.
Yes not long til school starts, my OH is a teacher so he`ll be back at work next week !
From what I gather Leicestershire only do 1 starting time for kids now so they have to go in the Sep - is your little girl just 4 ? Ready for school ? It will seem quiet with just 1 in tow.
Well, need to think of somewhere for lunch today. Found a handbag for the drain so doesnt look too bad - it just hurts sometimes where its sitting right on the ribs. Weather clouding over but thats OK for me as I wont look too daft in my big anaorak with hat.
Take care
Jane
Jane
I hated that drain, gave me no end of nerve pain. I think the thought of another one in is a major factor putting me off the mastecomy! Hope yours is out now but you are so fab taking it out in a bag. I was useless with mine, completely useless.
My daughter is 4 and a half so she is quite ready for school. And yes Leics only has one school intake. That’s not really a problem with her but when my son goes in 2 years time he’ll be 4 + 2wks so not sure if he’ll be ready. They say boys tend to be better starting a bit older than girls but they say deferring entry can cause more problems than it solves so he’ll just have be jolly well ready!
Looking forward to the Bank Holiday although I haven’t seen the forecast yet! Not sure what to do but can guarantee it’ll either be raining or everywhere will be packed.
I’m feeling great at the moment, really quite normal.Am enjoying getting out & about - wig has been a great investment. £200 but well worth it, besides I’d have easily spent that on highlights and cuts anyway. Everyone has said that they really can’t tell that it’s a wig but I have found that if I clip the top section back loosely that it takes the mega-volume wig look away somewhat and it looks more natural. Especially with these high winds we have at the moment - one gust and I can be left looking like Captain Caveman - so a tied back safety option is priceless.
Hope you are drain free soon and hope the painkillers are doing what they should
Take care
Alison
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Hi Alison
After much discussion and 3 visits from district nurse drain came out today - it was blocked so not doing anything in this last day. Am now a bit concerned thats its gone as quite alot came out yesterday - wheres it gonna go now ? But we`ll see. Sat in pub garden with baby and OH to celebrate, he enjoyed his lager, I enjoyed the crisps and nuts, baby enjoyed smiling at everyone. Then we realised she had poohed for England, coming out of every gap in clothing. She was delighted, but we left sharpish and got her home and into bath.
Little boy home tommorrow, am quite nervous. He has had a great time, but he really plays up when he gets home. Testing us all over again, but it will be lovely to have him home. Hope he`s in a cuddly mood ! Will also be nice to see my mum and dad who havent visited as they were babysitting.
Getting quite nervous about results on Tuesday - but not sure why as I have had the chemo, and nodes gone. Suppose I want to know how worried I shoyuldve been. Also marks a change from all that medical treatment to me now getting myself better. Quite daunting, but each day seems better. Have booked myself on one of the well being days where I can hopefully pick up some relaxation tips.
Was quite windy today, so I hope you were in control of your head.
Really glad to hear you are good between treatments, I was and we had some good times. You just want to enjoy every good moment and life seems kind of uncomplicated.
Weather doesnt look too bad for the weekend - so everywhere will be packed !
Take care
Jane
Jane
Glad you managed to give the drain the old heave-ho and can now sleep etc a bit easier.
Hope your boy has given you a huge hug and you have been able to have some quality time.
I’ve had a lovely day out to lunch with my oldest friend - she lives in Yorkshire so I don’t get to see her as often as I’d like. Nice though that now we make time to get together.
Lovely sunny weather that we’ve all been waiting for but just typical that I can’t sit out in it too much because of the chemo. Oh well it’s got to better than having to take the brolly out.
Wanted to go to seaside this weekend on account of the beautiful sunshine but it’ll be so packed that think it could turn out to be a bit of a trial. Had a lovely picnic in the park yesterday though which was just as good.
Let me know how you get on Tuesday, good luck.
Happy holidays
Alison
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Hi Alison
Went yesterday - built myself up into a real mess, and was all over by 10 in morning then spent rest of day trying to pick over every word that was said and summarise things. Why are these consultations so intimidating.
Anyway some good news ans some expected news.
Tumour shrunk from estimated 8cm to 2.2 cm - a remarkable response. But there were still some other small foci so it was good they did the mastectomy after all.
Wound is all healing well hardly any bruising etc and dont have to go back for 3 months.
As expected lymph nodes involved, have already had the chemotherapy, and knew they were involved as they were huge. Radiotherapy under arm to zap them is recommended.
Grade and HER staus not on report yet
So waiting to see oncologist again.
Think this meeting will be more satisfactory in answering my worries etc. Surgeon was very reluctant to discuss out comes, what it all means etc. But I cannot fault him, he has done his job etc. As for prognosis he just said he sees it as curable still - and that stats are out of date. I am a scientist and this isnt enough for me. Wish I could switch off my brain and just remember the things I have been told.
Took my OH and he has been great as he reminds me of the positive 1) great response to chemo, 2) good clear margins and all tumour gone, 3) radiotherapy will zap anything else in lymph nodes, 4) staging scans that I had done before chemo were all clear.
I must try and put my faith and trust into the radiotherapy. When I get the date for the oncologist I`ll be happier.
In the meantime cant believe how fast I am recovering, was out driving yesterday and cuddling the baby to sleep - whether she liked it or not !
Little boy was very sympathetic when he saw the dressings etc. pointed them out as if I hadnt seen them. I told him that its waht the doctors had done to make my arm better (have told him previously had poorly arm so couldnt pick him up etc). He is now being very careful of my arm. A bit later after he had thought about it he came up to me and said “mummuy - you look like a man, with only one top bit”, that was it, then he ran off to play again. I am not going to complicate the issue and had to laugh at his logic etc. Also I was relieved he didnt say t*t which I though he was going to say at first.
Prosthesis fitting end of Sep.
Was a great bank holiday - didnt rain and we had a lovely picnic with friends. Hope it keeps nice for the rest of the week.
If I dont “speak” to you before, good luck for Friday
Jane
Jane
Thanks for sharing your experience with me. It’s a minefield isn’t it - I always take a second pair of ears with me just in case. It’s amazing how many times I’ve been in one of those appointments come out & discussed some of the detail with my husband & he’s said “he didn’t say that”.
It all seems to get jumbled up. My oncologist wrote all my diagnosis details down so that I could read it all over when I got home which was very useful. Another one I know of records the appointment and gives patient a copy of everything that’s been said. Might be worth a mention when you go.
It’s good that he sees your situation as curable. I know they don’t like to use the word “cure” but my oncologist did and it was very re-assuring to hear. It might be a good idea for them to get hold of some more up-to-date stats though! I know what you mean I’m from the scientist camp too and want to know as much as they can tell me. It frustrates me sometimes when I feel they’re not telling me everything or are putting things too gently. I’d rather know than not but I suppose not everyone is the same & they have to be careful.
Its so good how well your chemo has worked. The effectiveness of mine won’t be as evident as mine is adjuvant so there is no tumour anymore to measure- thank heavens. It really helps doesn’t it to know that the source of all the problems has been removed. I still worry though, also being a lobular lady that there are still other foci in there like yours. I’m not sure that fear will ever go unless I have a mastectomy because I’m not sure that they necessarily show up on any scans.
Sorry I have not responded sooner but I have had real problems accessing this site and have not been able to log in for a few days. I didn’t want you to think I didn’t care - even asked the moderator to send you a message for me but thankfully my ISP sorted the problem for me today.
FEC number 3 tomorrow half way!!! - just hoping it’s as “good” as the last one. I’ve still got my bit of hair that I’ve managed to hold onto - only about 5% but any hair will do at the moment!! I feel quite confident going out in my wigs now and I find that I am less self concious in my scarf than my wig surprisingly. I suppose with the wig I’m thinking “do they know? can they tell?” whereas with the scarf I’m thinking “it’s obvious I’ve got no hair but so what!”. Sometimes less is more.
Hope you have a good weekend with the family
Take care
Alison
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