Hi Alison
Just a quickie - havent seen you posting for a while and hope you are OK. If you get a achance when you are back on line let me know how things are going.
TFN
Jane
Hi Jane
Yes I’m fine. Felt v sick with this chemo, lasted nearly 2 weeks.
I got quite down with it so have not been posting - feeling ok now though, back on track.
I think the half way point proved harder than I expected - I was looking at what I’d already done & thought “Oh no, I’ve got to go through that all over again!” rather than yipee half way only another 3 to go.
How are you feeling? Is everything healing ok? Do you have an implant to expand the skin?
I’m looking forward to a ‘normal’ week next week & then it’s chemo again next Friday. Ho hum!
Hope you are ok
Alison
Hi Alison
I found the 3rd to 4th really really hard, but hadnt wanted to tell you this before you got there ! Everyone is so pleased for you to be half way, but your not half way till you start the 4th chemo in my book. And your arr getting tireder, whilst you get used to the side effects doesnt make them go away. I had thrush 4 times but never told anyone as was so fed up with it all, but at one point I could hardly sit down. Dont know if this is helping ! By the 6th I started to take low dose antidepressant (from GP) and this helps alot and I dont get many side effects.
Hope this weekend and next week can be normal.
I am all healing well and moving my arm w/o much problem. No excuses not to change the babies nappy now. But I do cheat and give her a rice cake to suck on to stop her wriggling !
Dont have tisse expander in, surgeon left a lot of skin which has settled into some hideous folds, but will be worth it next year. Little boy has stopped quizzing me about it other than asking to see whether its grown any since the last time he looked. We are growing a little scientist I think - which is not what we need!
Will start radiotherapy on 8th Octover for 3 weeks at Birmingham. Theyll do chest wall and above collar bone. Also started my hormonal therapy - results show I have low eostrogen and am post menopausal ! Bit of a surprise, oncologist said it could be temporary due to chemo and theyll test again in 3-6 months. In meantime I have Arimidex to take and some huge calcium tablets to chew. If in fact I am in the menapause, its not as bad as I feared - 2-3 hot flushes at night and odd one in day. Much better now I can take my hat off to let out the heat. Have put a bit of weight on the middle, but hope thats it. Just feels very strange that not long ago I had the baby, now I am post menapausal (cant spell that word at all). On good days feel I am so lucky to have got her in in time, on bad days feel very old and more like her grandmother as I look after her only occasionally by myself as she is in nursery alot (she loves it) and my OH does alot.
Went to see the psycologist which helped alot, and I`ll see her again next week.
Hows the school for your little girl ? Has she been brining home models and paintings ?
Weather has certainly gone cooler - keeping my hat on cos my head gets cold now.
TFN
Jane
Jane
Thanks for sharing your mid-chemo experience. So glad it’s not just me!!! When you feel normal again as I do at the moment it’s hard to remember how poo you feel after chemo. Like you say though the symptoms become less of an issue but it’s just waiting for it all to pass that drives me nuts. It’s like wishing your life away but you know the only thing that will make you feel better is time.
That’s weird them telling you that you are menopausal - you think you’d know wouldn’t you, you think you could tell THEM!!! So soon after having a baby would be unusual so the temporary effect from chemo sounds likely. My periods have stopped through the chemo so I’ll probably have the same as you. I think for me it’s good though because my cancer is oestrogen positive so if my ovaries pack up it won’t be a bad thing. Like you though I see that I’m very lucky to have got my babies in time - the original plan was to wait another couple of years to have my second so if we had gone along with that I’d have never had my beautiful boy - the thought could break my heart.
I have firmly decided against the mastectomy now but will ask the consultant (I see him Oct 1st) if I can have a scan to determine if there are any other tumours there at the moment. If there are I will go for the mastectomy but if it comes up clear I’ll just go for the rads.
Daughter is loving school but not come back with any masterpieces yet - I think they put them all on display. We have parent’s evening next month so I will find out what she really gets up to. When she gets home each day I ask her what she’s done & replies “Can’t remember” or “Don’t know” - quite common apparently!
I’m quite please the weather has turned a bit - when it’s cooler I don’t look too out of place wearing a hat I reckon.
Enjoy what’s left of the weekend
Alison
x
Hi Alison
We had a lovely time at my brothers. His children are 7 and 4 so play with m little boy really well, we have the occasional riot break out but generally left to their own devices they get on great. One of the silver linings is that my little boy has been there to stay on his own so now he knows them really well. When we are there he lets them look after him alot which was great. I have never had that much in common with my brother an he could be a bit aloof (still is) but the way he responded was fantastic and the way he looks after the kids brings a tear to my eye sometimes. After my op he even told me he loved me ! He seems to have forgotton now but thats OK, back to normal is good too.
If I am going through the change - or indeed gone through it, what a relief. I too am ER+, had thought I`d go down the ovary removal route, but not sure now. Am waiting to see the genetecist, if there is a hereditary link then I think I will ask for them removed so that I am not at risk of ovarian cancer. But for the mo the eostrogen seems in control. Dare I say that something is in control ?
I think your reasoning about surgery is very logical. I am sure thats what they`ll go with. They are very reluctant to remove healthy tissue and seem to really try and preserve our bodies for us. Thank goodness, I went through a real phase of get rid of everything, they never said no but took the calm route of take time etc. Now I can see why. Did seem quite patronnising at time but what didnt.
At my brothers I crossed the barrier of having to care too much what I look and feel like. With 3 kids on your knee the prosthesis took a bit of a battering, I just had to re-adjust it a bit and they didnt hurt me. My nephew thought my hair cut was great. They all piled into the bed in the morning and I just pulled the duvet over my chest and they didnt notice. However I did have to ban my 4 year old neice from watching me get dressed - some things dont need to happen I know she would report all over the lunch table. My little boy seems to have forgotton to check for re-growth these days so hopefully that phase is over. I also played football and bat and ball games, all with my right arm. I had been cautious about reaching above my head but not any more.
Its sunny here at the moment so I should be pegging washing out, atleast I should wash up.
Think The dont knows are the way of life from now on. Parents evening, a parent milestone. Do the children come with you to show off their things ?
At the weekend the M1 was full of cars packed up with belongings to take kids off to uni. 20 yrs since I went but I can remember it well. Soon it will be us embarassing them by trying to make conversation with their potential new friends. They`ll be wishing we just go ASAP.
Hope your week is starting OK
TFN
Jane
Jane
You’ve made me think. There was me reading your note about 20yrs since uni & I realised its 16yrs since I went - only feels like about 10. Makes me feel old - as if being bald & getting a spare tyre wasn’t doing that already!
I have 2 brothers & I’ve become so much closer to them since my dx. My oldest brother, like yours, tells me every time I speak to him that he loves me - never told me before. Seems a bit strange but nice. My younger brother is a strong silent type so no such gushings from him but he doesn’t need to - he knows that I know he loves me. I tell all my friends now that I love them (well those that I do love!!) and I have found it very liberating. Shame it takes something like an illness for us Brits to come out of our shells but there you go.
In laws got back from hol yesterday & invited us straight over for tea last night. Bless them they’d really missed us all esp the kids. Since my dx they’ve spent a lot of time together & it’s so sweet that they missed each other so much. My little boy would stand at the window while they were away whimpering “Grandad come, open door, Grandad come” Bless him.
My daughter was up most of last night with a temperature so I’m shattered today, so much for resting & taking it easy the week leading up to chemo. Fingers crossed my bloods will have recovered this time. You know you said you had the bone marrow injections how does it work? If my bloods are low will they give me the chemo anyway & supplement it with the injections or will it be injection & have to go back following week for chemo? Doctor didn’t explain that part to me!
Glad you are doing OK
Take it easy
Alison
x
Hi Alison
From what I understand the bone marrow boosting drugs are forms of a natural substance called GCSF (granulocyte colony stimulating factor) which basically stimulate the bone marrow to release more neutrophils.
There are 2 forms.
Neupogen - is in single injections (short acting) and can be given anytime the cells are low to boost them. I recived this after my 2nd FEC when on day 10 they were low, I took it for days 10, 11, 12, on day 13 my neutrophils measured 5 so I stopped taking it.
Neulasta - is in 1 big long lasting injection which releases smaller amounts of G-CSF but over a longer period (only 1 injection needed), but must be given within 1 day of chemo. They gave me this straight after 3rd FEC as my cells had dropped with the 1st and 2nd round they thought the pattern would be repeated. So gave me neulasta. They will only give neuilasta if they are fairly sure your cells wouldve dropped anyway.
After the neulasta was prescribed and agreed I would get it each time they gave me the chamo when the cells were low (1) on the day of chemo and then the neulasta the next day.
Do you see your onc on Friday before treatment ? I only used to see mine on the thursday afterwards which was a bit confusing as he had to decide then what he`d prescribe for the next time !
There are side effects with both and some oncs dont recommend it. I ached all over especially in long bones and shoulders, on 2 occasions I couldnt get out of bed for the day. But this doesnt happen to all.
Relos - you cant figure them out, just accept them. Glad your inlaws are back to help. Letting them help works both ways, theyll feel better for it ans so will you.
You still have to be the mummy, sleepless nights ! Some nights I`ve been awake almost willing the kids to wake up to give me something to do. But no, its always when I am hard fast aslepp that they need you.
We are fighting BC not just wishing our lives away. I think in some ways the chemo before was easier as I had a end point in sight and could see the effects on the tumour. Yours is faith that its working on any stray cells. It will be.
Psychologist told me to be easy on myself and live for the moment more. Am trying !
TFN
Jane
Jane
You are really clued up on this - I feel such a dumb as about it all because I feel that no-one is really telling me anything. I turn up, they say are you OK, I say yes, they say OK, give me drugs, say goodbye. No-one really tells me anything about my cancer - I hope it’s because they are confident they have got it all so there’s not much else they can say. I did have an interesting discussion with the nurse last time about how the chemo drugs actually work so I learned quite a bit from her but that was only because I asked!!
I feel very tired & run down at the moment so am not very hopeful about getting the chemo tomorrow unless they can give me the bone marrow drugs. I am trying to rest as much as I can but as you know it’s not always possible with two small children. My daughter it turns out had an ear & throat infection with impetigo thrown in for good measure. As a result she has been off school so I’ve had the 2 of them this week. She’s back at school now & my boy is sleeping so I am resting at the PC!
Trying to get the housework up to date as I know I won’t be doing any next week but it’s not really happening, I’m too tired. So it’ll just have to keep - sure the kids won’t mind a few stains on the carpet for a few days. And if visitors don’t like it they’ll have to lump it.
Hope you are getting rest & getting a bit more movement in your arm. It took me about 6 weeks to get full range of movement back in mine. I had some cording which was making mine tight - it’s a stringy bit of tissue that sticks out of your arm when you stretch it. Apparently it is quite common but not many women are told about it - I wasn’t. Just to warn you in case you get it & wonder what it is. It goes eventually with lots of stretching thankfully.
Take care
Alison
Hi Alison
Have found out most of my stuff on the internet - either here or at cancerbacup. Or by experience ! Not much info was volunteered, and I am sure this is because its all going well and I there is no need to dwell on a lot of things.
I had a lot more time to myself than you as my kids went to the nursery alot. Now I am on sick leave so feel I am missing work not them. Its tougher beinbg a full time mum I think.
I sometimes felt sure I had low neuts or an infection coming but often was OK on the Friday. Its tough. Hope you get through tommorrow as well as you can.
I have just been to a well being day run by breast cancer care. It was really good. If you get a chance etc. There was a good mix of younger women too.
Few stains on the carpet - are you sticking to the floor yet ?
We have got too seriously whiney children at the moment. I am keeping out of it. Just the noise makes me weary sometimes - nothing to do with BC tho, I think !
Arm is doing well.
Get my proper prosthesis tommorrow - quite excited. Will ask about swimming too.
Impetigo, did you have to put purple stuff on her ?
TFN
Jane
How’d the fitting go? Hope you are happy with it.
I had my chemo - am feeling very tired & got the steroid red cheeks - to be expected!
I am having the Neulasta tomorrow as my levels were again borderline neutrophils 1.5 - said I could have it up to 72 hrs after chemo, am a bit worried because they told you 24 hrs. Anyway, will have it after the next 2 chemos as well - at least then I should be more likely to stay on track which should make planning a bit easier.
Think I’ll ask them to go for a different vein next time as they have used the same one for all 4 of mine & it was quite painful going in this time.
Well off for a ginger nut & a lie down now…
Take care
Alison
x
Hi Alison
24 hrs was what I had in my head as I always did mine on the saturday - they`ll be right. Are you going to stab yourself. I did, pleanty of fat to get hold of. But they also offerred for the district nurse to come. In hindsight this wouldve been ok, the nurses that came after my op were lovely and it wouldve been nice to see them 1-2 days after the chemo too. Hindsight is a wonderful thing.
Dont you just love the red cheeks, you eyes are sunken grey, you feel like cr*p but you have these glowong cheeks. Surreal.
Was talking to a good friend today and she was saying that I am now beginning to make sense again unlike when on chemo. I said Id thought I was OK on the chemo, she said no I was way out of it ! We were also looking at some photos from last year and she said just what I was thinking about how nice my hair had been. Id forgotton. Still my head is well covered now, just in time for winter.
Hows the wig going - better now the weathers cooler ?
I was relieved when got neulasta as you say things are more likely to keep on track - the sooner its over the better. Also, although you still need to be careful of infections I felt I had a safety net and could be alot closer to the kids.
We are snotty noses all round this weekend - how does Tommy manage to get his so green, its luminous.
Prosthesis fitting was interesting its amazing how your boob just becomes a bit of anatomy to measure up etc. In the end they are going to order one in, they didnt have the quite right size in the shape that was best. Will go back next Friday. But even the not quite right ones were great !
Also had a Mac Millan coffee morning at the BCU and met up with some of the support group. It was a good event with good company.
OHs sisters for Sunday lunch tommorrow, I intend to do as little as possible.
Yes ask about another vein, hope it doesnt get too painful.
Getting measured for radiotherapy on Monday.
Will you have rads if you dont have the mastectomy ?
Hope ginger nut helped. You really have passed halfway now. Sorry about the cliche, cant believe I have used it as you`ll feel you still have a long way to go I am sure.
We had sausages and mash with the kids - so hoping to treat myself to an adult chocolatey treat when they gone to bed.
OH is going out later, He hasnt left me alone at our house since diagnosis as I hated it, I am releived to be kind oflooking forward to it now. Dont think theres much on telly tho`.
Hope you took your dex before 5.
TFN
Jane
Jane
Oh YES - I take my Dex at 1pm, only made that mistake once, up all night!!!
Saw consultant today who is lovely. He understood my reasons for not wanting mastectomy at this time so we will proceed with rads after chemo is finished. However, he has agreed to ask the radiologist if they think an MR scan may be of use - I have requested one to help me make the decision - basically if there are any little tumours waiting in there for me then I’ll agree to a mastecomy after chemo but if they don’t find anything I’ll go ahead with rads.
I don’t have to decide for definate until next month at least but he’s not twisting my arm over it.
BCN has filled in my Willow Foundation Pack for me today too - that’ll be a treat well worth waiting for if it all goes ahead. Hubby & I are also planning a day at Ragdale Hall sometime after all my treatment which looks like Jan 08 now - back massage & facial - aaahhhhh!!!
Hope you all over colds soon & hope you enjoyed being Home Alone!
Take care
Alison
x
Hi Alison
Did you get the neulasta on Sunday ?
I had an MRI scan of my left breast and it put my mind at rest WRT having a double mastectomy. Sounds like you had a good appointment.
I was measured for rads on Monday - it was all abit cold. Also as its at Birmingham I didnt know anybody. But its the final stage left. I was a bit upset coming home (maybe its just the M42 that upsets me as it always seems to be on that motorway). I think I thought I was going to the Bull ring shopping and it was a bit of a shock to be back at a cancer unit. Also a bit of a shock the size of the area and to have my kneck marked out. Back on track now tho.
I have heard great things about Ragdale Hall. You will love it. Jan should be good as you`ll get rid of those Xmas tensions aswell !
I am enjoying today in a way lots of tidying up and sorting out, clothes too small and summery are out. Thus need to go shopping !
I enjoyed my quiet ight in - lovely bath and telly in bed. Fed baby when she woke at 11.30 (made mental note OH wasnt home yet) then went back to sleep. Felt like I was getting a bit of my life back - not exciting but felt I was needed abit. OH had good time etc.
Have an appointment with consultant tommorrow as have had pains and small amount of swelling in left breast. Hope I am being daft and theres some obvious explanation such as hormones or being lopsided. The I`ll feel daft but relieved.
Am in two minds about whether I like breast cancer awareness month - would like to forget when in supermarket etc. I know this is small minded. I`ll aim for the big picture next year.
October already - soon be half term
TFN
Jane
Jane
Had Neulasta, no real problems with it but find my muscles are quite tender to the touch - elbow jabs from toddlers not welcome.
Got blinding headache & feeling quite lightheaded, dizzy at times. Can’t possibly get anymore rest than am getting at the moment. I’ve got 2 speeds, SLOW & STOP. Am getting very bored though - I’m in the too exhausted to do anything but so bored of doing nothing stage. You know if I’m lucky enough to get to retirement age I’ll not want to spend my afternoons nodding off into a cup of tea dunking digestives, driving me mad. Trying to keep the old brain working but half way through anything I drift away, concentration span at a minimum.
There’s a Harvest Activity Day at daughter’s school today, think I’ll pop down to see what they’re up to, apparently you can join in making craft stuff. Just hope some little kid doesn’t get glue in my wig, I’ll have to be vary careful.
My friend has just taken my little boy out for a few hours for me but for the first time ever he was screaming for me, didn’t want to go. I reckon maybe he’s coming down with something because he’s never done that before. Hope it’s not a bug, could do without it, like you say at least the Neulasta is a bit of a safety net. Hope he’s OK.
Am feeling quite down with it all - not the cancer & the whole worry of death thing - but just the feeling of not feeling like me anymore. Bald, getting fat which I HATE, no energy, no passion for anything it seems. Feel like I’m surviving not living at the moment. So want the New Year to come so I can be me again & get back to being the wife & Mum I used to be rather than just being cancer.
Sorry to whine but I know you have an idea where I’m coming from…
Hope you are OK & I haven’t depressed you too much - it’s just the rollercoaster effect I’m afraid at the moment.
Take care
Alison
x
Hi Alison
You are not getting me down - cheering me up in a way as I remember how cra* it all was, but thats what it is now a memory.
I hate not being me. I am now at about 70%, but still not me - which bits a re missing ? Is it a bit of everything or a whole huge piece of 1 part of me.
You are surviving, some days are better than others. But surviving about sums it up. People tell you to not expect more (my GP did) but it doesnt stop you getting fed up in the meantime.
You are not just surviving you are fight bc - to stop it coming back. Then you will have the rest of your life to be you.
Hope your little boy stopped fretting as soon as he got around the corner. They are such bug monsters.
You would be brave to go to the school craft thing at the best of times - all those kids ! So hope you come out of it OK and wig still on.
Tommy put a blue paint hand print on my number 1 blouse and it wont come off. Its the blouse I rely on as it looks nice but not too frumpy. I now have to trawl around for another one. I was in tears. Its only a blouse but…
Had my appointment yesterday and all is clear. Pheeeeewww. The association of waiting in the BCU was horrendous. They did an ultrasound that was clear etc. The people were lovely and the consultant re-assuring.
OH is at home today - kids in nursery. Was hoping for a nice lunch somewhere but he has gone into DIY overdrive. But in a way this is nice as this is how he really is - bit nerdy etc.
I cant wait to be able to go swimming aagain, get a bit fitter. About another 4-6 weeks I think. In that time I have to trawl around for a costume that my false tit can go in. Some days I laugh, some not. Today I can laugh about it. In the meantime Tommy and I have taken to filling the bath to the brim with bubbles and spending time in there “swimming” and playing. Time to get out tho when he has gone quiet and something warm happens - you know he`s peed and he bursts out laughing. Wonder if toddler pee is good for your chemo/radiotherapy skin ?
Drag yourself to the school, go through the motions and then you can enjoy the memory of it in the future. Also you daughter will love it. They dont know we are not quite with it and they dont care. They just want and need us there in some form. Its us that are the perfectioists
Of to get some evening primrose oil for my breast pain. they more or less said it was postmenapausal - didnt quite pat me on the head, but you could tell consultant was tempted. But think my scowl warned him off
TFN
Jane
Hi
Great news - I bet that’s a real weight off your mind. Another hurdle overcome.
Popped into the school - just been ushered out as it’s lunchtime - am so glad I went. It was lovely to see what they get up to & I’m amazed at how calm the teachers are with 30 reception kids (22 of which are boys!) I ended up getting out the dustpan to help clear away & had to smile to myself how it felf quite nice & normal, a little bit of me maybe? I was doing something useful even if it was just getting some dried pulses off the carpet. We made dough hedghogs & painted a harvest scene, lovely to spend time with her in her environment. She was so pleased I went which made it all worthwhile.
I think a bit of fresh air has done me good & am looking forward to the boy coming home shortly. Seem to forget that he’s only just turned two and there are still things going on in his little head.
Thanks for all your support, I think you’ve snapped me out of it. Plus got Ragdale info through today so have been dreaming about that - however, there’s a bit of a worry about massage after lymph removal & not recommended to use sauna, whirpool or steam room. I’ll have to look at the foot massage instead I think.
Hope you enjoy the rest of your day. My hubby hasn’t got the energy for DIY at the moment, bless him, but we have so much that needs doing - our feet won’t touch the ground next year - well here’s hoping!!
Ta-ta
Alison
x
Hi Alison
Got my prosthesis fitted - it feels alot better than the bit of foam. I almost cried. Its heavier and sort of moves with you also its the right squidgyness.
I am going out tonight with some girlfriends and will be able o be scarfless - cantwait.
Glad you enjoyed the school visit. Hope you are all bug free for the weekend. Its been a reall sunny day here - hope it continues
TFN
Jane
Jane
How was your night out? Hope going commando was liberating for you. Step by step we get back to normal!
My hair, what’s left of it, has gone really soft & fluffy. Think it;s new growth which is a great feeling. I’m still puzzled why my leg hair has continued to grow through the chemo - I was hoping that would be a job I wouldn’t have to do!
Glad your prosthesis is a success - can you swim with it too?
I think I’ve got an infection around my other wisdom tooth now - off to the dentist this afternoon. No doubt will come back armed with antibiotics, mouthwash & gel.
Feeling pretty much OK after this chemo, apart from the tooth! Think the Neulasta has certainly helped.
Hope you all over your bugs now.
Take care
Alison
Hi Alison
Hope the tooth is OK, not hindering you from eating well.
My hair went fluffy at the same time as the babies - what a pair. Its now looking fine and I am enjoying it being short, just wash it in the shower and off I go.
Feeling a bit fed up today - just so tired of being grateful all the time. I just want to be independant again and be able to look my family and myself. I feel like nobody actually sees me anymore. Which is a bit ironic as I`ve spent the last few months not wanting anybody to see me !
Just another 2-3 weeks then I`ll be able to go swimming. I can wear the foam prosthesis for this. Was thinking of joining a health club so that the swimming pool and changing rooms much nicer. Also can go anytime in the day where as at Ashby you are really limited when you can go in the day. Think I will treat myself.
When is your day at Ragdale - will it be just you and OH ?
To feel OK after 4th chemo is great news.
3 rads done, no pinkness yet. M and S food is doing very well out of me as there is one on the way to the hospital.
Not over the bugs yet, baby girl got funny tummy so OH on way to pick her up from nursery. Poor thing.
TFN
Jane
Jane
Sorry to hear you are feeling fed up. I’m sure it’ll pass. I know what you mean though one minute I want people around me the next I want to hide from the world! There’s no pleasing me some days!!!
We haven’t decided on a date for Ragdale yet - going to wait til I’ve finished my rads so it’s something to look forward to at the end of my treatment. Hubby & I went there a few days before we got married to relax & recharge. Goodness me - we thought we were tired THEN - no kids, no chemo. We really will appreciate it so much more this time, having time to ourselves & being pampered sounds like heaven. For my Willow day I’m hoping to go to London, again it’ll be after treatment has finished.
The tooth is much better. I managed the infection successfully with Corsodyl mouthwash & gel. Although it ended up quite ulcerated so popped down to the dentist so he could take a look. I don’t want to leave infections while having chemo just in case.
Got my brother & family coming over Saturday which should be nice. He’s coming with me to the hospital for my next lot of chemo - wants to help where he can which is sweet. Can’t believe it’s only next Friday til I go for the next one. Thankfully it’s going quickly.
Hope the rads are going OK for you - can’t believe you have to go to Birmingham everyday. How come they didn’t send you to Leicester, surely that would have been easier for you? Or even Nottingham?
Hope you feel better soon
Alison