Is it my generation or the fact I got 2 kids?

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1

Hi all

Just wanted to say that when I was in hospital for my WLE there were post-menopausal women after double mastectomies dancing around the ward with drains coming out of every nightdress opening as I lay in bed wincing at every nerve pain from the blasted drains.

I felt that it was all wrong, I’m 34 and should be leading the exercise class to YMCA, and they should be the ones resting.The girl in the bed next to me was 35 with 2 young children too and she was making the same as me. It’s my couch potato generation I thought, I must get up and skip to the loo, I’m so ashamed.

Then it hit me - I’ve got a 4yr old and a 1 year old at home and when I get out of hospital they will show no mercy, I’m getting all the rest I can NOW. Gaynor with her 3 dancing drains was retired and had a retired husband to look after her every need when she got out for as long as she wished. She’d been able to sleep every night for the last 5 years…and nap in the day if she wished…and she knew what lie-ins were!

What I mean to say is YOUNG WOMEN don’t beat yourselves up, we’re not superwomen. We’'ve got years ahead living with the fear of cancer, many of us with young children we fear we won’t see grow up. I worry my 1 year old won’t remember his mummy and that breaks my heart. When all my treatment is over I’ll spring back into life and my kids won’t know what’s hit 'em

BUT…FOR NOW…

I’m in post-op recovery and started chemo last week then they’re threatening me with a mastectomy because I got lobular invasive cancer, else it’ll be radiotherapy.This may be the last time I get to take it easy on myself til my baby starts school, and what with surgery, poisoning(chemo), and baldness to contend with I think I’ll have jolly well earned it!!!

Anyone else feel the same or am I the couch potato I feared I was??? Come on girls swing those drains!

Alisonxxx

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Hi Alison
Know just weher your coming from and thanks for sharing. I have a 3yr old and 6month baby. At the best of times me and OH are knackered. I went from pregnancy which was tiring and miserable to diagnosis when baby was 6 weeks old. My OH and I hardly found time to talk about it as early evenings you have to get them to bed, then you are knackered. We are trying desperateltly not to spoli my 3 yr old and have life as normal. I had my chemo 1st to shrink the tumour if possible, and am now just finished 6xFEC yesterday - mastectomy in 2.5 weeks time (Aug14th) I am actually kind of looking forward to a few nights sleep hoplefully, and dont know that I`ll be rushing home. For two weeks we have care and help and my OH will be off work. Then back to “normal|”, kids will be in nursery - but who will look after me ? mt OH will be exhauseted. 2.5 weeks seems quick but I am glad. Again I am young they tell me so should be able to cope with the schedule.

On the bright side, the kids have made the chemotherapy fly by and after the initial nauseous few days I have really felt well again, I have my prgnancy to compare to so any time I dont have indegestion on a huge bump seems gtreat. They go to nursery a lot but seeing them home has been lovely and the baby has been a delight. I do nothing other than play with her when I have her on my days we have great times playing - never rushing. Sometimnes I even forget whats happening with the BC when I am with them. Wouldhave been thinking of going back to work but now not contemplating it til after Xmas and looking forward to the Autumn with my young family.

Everything I hear is that you are young and can cope with all the treatments we throw at you - but we still feel exhausted.

I was just doing aquarobics after the baby and had lost half a stone, now I have put on a stone and the jelly belly is getting bigger. Face with tamoxifen for 5 years also makes me feel old.

We are a couch potato family at the momet, my little boy wants to play and I am persauding him to watch TV.

Walks are good with the pram and boogie board. We also had a good week on the beach where I could snooze while they all played.

I totally agree with your worries - but somehow we get by.

Have you tried the Lazy town work out on the cbeebies web sight. Its great, sporticus does his work out and my 3 year old joins in, I do a half hearted version but he doesnt care. The baby loves to watch and bounce in her chair. Found my OH doing it with them at 6 one morning and just joined in - must have looked mad. But who cares.

I also have lobular BC - which seems quite rareand more so in younger woman, hence mastectomy as in 2 sites also.

Keep me posted on your chemo - I might be able to offer some tips, or just listen to your good and bad times.

Writing this from my bed by the way after breakfast in bed kids at grandmas

TFN
Jane

3

Jane

Hope you enjoyed your breakfast - I gotta do that kids at grandma’s thing, sounds a must.
Congratulations on finishing your FEC, you’ve hardly got time to catch your breath though have you before the mastectomy? What a roller-coaster this is especially for you dx when your baby was so young.

I’m the same, you’ve got to just look to the future and enjoy it! I’m glad to find someone else in my situation who has lobular BC too. How did you decide on the mastectomy? Was it a definate from the start or did you feel pressured into it?

My consultant phoned me at home the day after my appt to apologise for the fact that I may have felt ‘bullied’ into making the decision for the chop. That left me more confused. I’m finding it hard to contemplate that step at the moment and keep shying towards radiotherapy.They found another site when they went in to do my WLE .Have they given you any idea of sucess rates/recurrence chances of radio vs mastectomy? My docs don’t seem to be able to agree!

Are you having a reconstruction too?

Having lunch at PC - kids at a birthday party!

Alison
x

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Hi Alison
Hope you enjoyed your lunch. Glad we are spoiling ourselves a bit.
From the initial mammogram and ultrasound they know my tumour is multifocal - an hr glass shape and estimated at 8 cm. The surgeon has always said it would be a mastectomy as it is multifocal. They did the chemo first to shrink it to get better margins and and stop any spread as I had lymph node involvement. But he was always convinced it would be a mastectomy and has never offerred an alternative. Now the chemo response has been so good - you cannot feel it anymore and I have a mammogram on Wed to see how small its got to - that the oncologist has mentioed a WLE is a possibility - but he`ll leave that up to the surgeon. The oncologist did say that with a mastectomy I mighten need radiotherapy. But again the surgeon has always said I would need rads to the chest wall. With a recon - the surgeon said not for atleast a year. They want me to get over what I have got 1st - maybe this is the first time they appreciate what we have been throgh, even tho we are youn and can cope. At 1st I was disapointed to wait for a recon but now am pleased to have a break to lookl forwardd to.

In a way I hope I am not left with a decision to make myself between a WLE and mastectomy - its a tough one. Like you I seem to have two opinions from the onc and surgeon. The surgeon has always bee very upfront and almost presented the worsed case scenario - often used quite brutal words and phrases. But I trust he`s good at his job. The oncologist is a lot more gentle and has fed me information more on a need to know basis. As you go through chemo you see more of the oncologist and I went through not been too sure of him to having very good and re-assurring consultations.

From what I have read the results from WLE + rads are very similar to mastectomy. Maybe the BCN can help with such decisions, I havent been in touch with my ubit much as have been more associated with the chemo unit. But from what I read hear many people find them good in helping make decisions.

However from the effect on my tumour I am now totally concinced of the power of chemo - if it did that to my tumour it must be stopping any possible metasteses. So although its hard to get through I am convinced its worth it.

Will they wait until after chemo for a mastectomy if you follow that route ?

Hopefully weather will be good tommorrow - I am in the midlands - so we might get out and aboutbefore they come back from grandmas. Until I started chemo they hadnt stayed at my mums too much but she was keen to do this so we have some peace and quiet after each chemo to look after each other. My 3 yr old has loved going and my mum feels really useful as she cant look after me too much as she lives 2hrs away. Now we have all agreed that we`ll keep it up, meybe not every 3 weeks but certainly often, so me and OH can get away more or relax at home. Every cloud etc.

Take care
Jane

5

Jane

Thanks for all your info. I feel like a bit of a novice but I suppose I am!!

My day not started good though. My 4 yr old has come down with chicken pox so am waiting to hear back from hospital if I’ve got to go in for anti-viral drugs etc. I’m suffereing with a really sore throat - tonsilitis proprtions!! - and think it’s a bad cold. I’m on chemo day 10 so a cold & chicken pox is not an appealing thought.

Even worse it’s my husbands 40th birthday in a couple of weeks and I got him tickets for the test match today at Trent Bridge. Play starts at 11am and I’m still chasing the hospital to see if I’ve got to go in PLUS my oven packed up yesterday so got to fit in a visit to Curry’s too.

Have been looking forward to today for nearly a year and it’s all ended up a mess. I’m annoyed that after my rough chemo week I was starting to feel ‘normal’ and now this throat/cold has put me right back. Hospital said because I don’t have a temperature just gargle mouthwash - that’s doing nothing to ease the pain but is hopefully sorting it out slowly.

I’m sucking on pineapple & that’s seems to be helping. Kids are out with grandparents so that helps too!

Will let you know how I get on, I am in midlands too - Leicester - so you should be seeing a bit of sun like me!

Take care
Alison
x

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Hi Alison
I had a few episodes when I felt rough/fear of infection but they always let me home with antibiotics as my temp never really went high. At one time my neuts were really low but it was my 3 yearold B.day and my dads so they didnt keep me in and sent me home with antibiotics. They have always tried to keep me at home as they think this is best for ones well being.

Not had the chicken pox scare tho`. I found it quite stressy never quite knowing what to do for the best for your health versus the family versus a social life. But we planned lots and didnt have to cancel much in the end.

Hope you got your trip to currys in - what did we ever do when shops werent open on a Sunday ?

Are you looking after your 2 children at home fulltime ?

Well we have had good weather - very windy. So hopefully trent bridge was good weather wise at least.

We are just the other side of Leicester in Ashby, but I go to Burton for my treatment etc.

TFN
Jane

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Hi hun

Turned out ok in the end. Got a temporary oven sorted til we have a total re-fit next year. Hospital said as I’ve had chicken pox before I’m at low risk so not to worry. I was quite surprised they didn’t just give me something in case - if I get it, or shingles, that could be a week in hospital to sort me out, but hey you got to hope they know best.

Got to the test match in end - not til after lunch though - but it was glorious sunshine and we had a lovely time together, child-free.
Yes, I am full time mum so next week I suppose I’ll have to ring round the babysitters to have the munchkins to limit my exposure to the chicken pox.

My next chemo falls on my youngest’s birthday next month like you hope they have no reason to keep me in. How has the FEC last dose been for you? Did you find it got any easier? Were you very sick with your chemo? I just can’t believe the tiredness - it’s like nothing I’ve ever known. How did you find/cope with the hair loss?

Take care
Alison
x

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Hi Alison
The weather was kind to us too - glad you got to the cricket. I am not a cricket fan, too many Sundays made to spend watching my brother play in village team, but any time relaxing in the out doors “normally” sounds great.

Pleased they dont seem too worried about the Cpox. Hope you dont get shingles etc. When my 3 yr old had Cpox I didnt get shingles from him then. I found bicarnoate of soda in his bath really dried up and soothed the spots.

As for the oven - now you have no excuse for not cooking, so I am not sure to be pleased for you or not.

The last FEC hasnt turned out to be the breeze I had hoped. I am so relieved, but think my resiliance has given up with this last one. Think I paced myself to get through it and now its all gone. But my common sense tells me I will be better in a day or 2. The worsed thing I find is that sometimes its difficult to actually pin point just what is wrong ! Today I am just aching all over. It will pass.

Winge over - I did find with the FEC that after 3-4 days I really began to feel well and we had a fine time at all of our “events”. I think when you start to feel well after each chemo (3rd to 4th day) you are so relieved to feel well you become almost superhuman. I found I ate loads (from the dex I think) and bought loads of food - which pleased my OH.

Each cycle had distinct phases such as the nausea (never actually sick but tummy bug feeling), 2-3 days, sore mouth, 7-10 days, bad taste towards end. But the tiredness and other side effects werent cycle dependent.

As time went on I found I needed more help with the baby, either my mum came or I took her to the nursery where my 3 yr old goes. She now goes every Monday so I get a break, little boy goes mon - wed. So on Tues and Wed theres just me and the baby. My OH is a part-time teacher so we have been really luck with his part time hrs and now he is on summer holidays.

Haie loss - I did the cold cap thing. Its come out slowly over the time and now I have about 20% left. But its at the back sides and a small fringe. So at home I look like a freak, but when I go out I can still wear a baseball cap. I have worn scarves to go out for meals etc as dont like the baseball cap on all evening, and after the initial odd stare got on OK. I have a nice wig but havent worn it much as tend to just have the time to stick on the hat and go. Got my scarves from Blacks out door shop. They are like tubes (called a buffy) and very light weight. When the shedding has been bad I wore them to sleep in so that hair didnt go everywhere. Also made visiting people easier if we stayed overnight. Also foun them easy to put on in the morning which was good when we had visitors that stayed. They really helped me get over s transition stage and being able to go away and have visitors as normal was a huge boost to moral.

I found myself apologising all the time to OH for being tired - I was sure he thought I was just being lazy. But sometimes in the evening I couldnt even speak. But now Ive stopped, he doesnt expect anything of me other than what I am happy to do. Its us that have the expectations !

Theyll soon be back from nursery and thats the end of my quiet Monday - Ive enjoyed it, but will be peased to see them.

Is your chemo FEC ?
TFN
Jane

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Hi Alison, i don’t think its your generation, i’m 44 and luckily for me my youngest is now 15yrs old, i’ve been lucky because i can rest when i want to now, not so easy for you younger mums who have such little ones, take advantage of any family support that you can, i’ve been happy for my outlaws to come and cook occasionally, and my hubby is a dab hand with the hoover, but i have to say, i could ask more of my children but i would rather they carried on as normal as they can do, so, still a lot of work for us older ones!

Alison xxxx

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Hi ladies

Alison, thanks for that I suppose it’s just dealing how you can with what you’ve got. I’ve been able to employ the inlaws as meals on wheels, maid, gardener and of course babysitters. Seems wrong how they in their 70s are looking after me and I feel that I should be looking after them.

Jane, yes my chemo is FEC - gawd bless it. It’s seeing that red stuff being pumped into me that turns my stomach - just the thought of it, bleurgh!

Ive had the worst few days with this sore throat, like swallowing glass, no let up so sleep’s impossible. Is a sore throat normalon chemo? I’m off to GP tomorrow to make sure there’s no infection, as long as he can give me something for the pain I’m not all that bothered what the cause is! Have also got really sore gum on my wisdom tooth, not sure if it’s ulcer or infection - checking that one out with the dentist tomorrow too. So, inlaws got the kids and I’m spending the day with medics - what joy!

Take care
Alison
x

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Hi Alison

Agree with you on the red stuff - I imagine that I can smell it, the slightest chemical scent of what I imagine is red, sets me off. Thats my biggest prob at the moment, aches gone but association with things. Sure this will pass with time. Am having my 1st cup of coffee since Friday, so enjoying that and quite a few things now are coming back on board.

I got sore mouth, and as you say where I had wisdom teeth, but it never seemed to go very “deep” just kind of 1 layer of skin, so healed OK in the 3rd week. I found the oraldene mouth wash good. They gave me a small bottle at the unit at the start and I bought more along the way.

Hope your day having checkups went OK. Its amazing how people rally so that we can look after ourselves. Atleast you get to read the odd magazine or page of a book while waiting.

Some of our “babysitters” have signed up to keep going after treatment is over so me and OH can get away etc. Which will be great, they have always said they would but we`ve never made use of them before.

Back to the red stuff - it may be foul but it does its job - my tumour has really shrunk so we know its working on those cancer cells.

Its my trip out tommorrow, ultrasound and mamogram. Hope theyve got some new magazines

TFN
Jane

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Jane

Hope it all goes OK for you today - be sure to let me know how you get on.

Didn’t go to GP in the end because throat felt much better but went to dentist and have got infection all around my wisdom tooth and am on antibiotics now. I can’t eat (or sleep) with the pain so I hope that the tablets start kicking in soon so that I can at least have a ‘normal’ week until they pump me full of chemo again!

Good luck today, I got it all crossed for you…

Take care
Alison
x

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Glad your throat is feeling better - shame about the tooth. Toothache is really horrible.

The ultasound was great news, she found it hard to locate any tumour (looking for a needle in a haystack were her exact words), not sure about mamogram as they just took the films. All results go to surgeon who I`ll see on Monday, but to have the news from the ultrasound was fantastic.

I know I am still in for an operation etc. But to know the chemo has worked so well is a huge boost. Now I am beginning get over the last chemo I am beginning to feel positive about things again. Celebrated tonight with chinese - not strictly allowed on chemo but weve never had a dodgy one from there etc. the simple pleasures eh ?

We`re heading for a mad few days as little boy not in nursery and OHs sister an family visiting.

Hope your antibiotics kick in and as you say you can get on with some of the normal things.

Weather is looking good so its the paddling pool in the garden I hope

When is your next chemi ?

Take care
Jane

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Jane

That’s great news, I am totally amazed how well your chemo has worked - good to know all the hard stuff has been worth it.

My hairs started to come out today - I’m really upset about it but I suppose the waitings over now I just got to go with it. Got the clippers ready for when it starts to look ridiculous. I got on of those Buffs - with that, scarves, bandanas, hats and wigs I think I’ve got it all covered!

Next chemo on Aug 10th - my son’s 2nd birthday, boo hoo! Just hope my bloods are ok after the cold & infection. The body is an amazing thing though how it recovers.

Its great to hear you feeling so positive and hope you enjoy the chinese. I didn’t realise they weren’t allowed on chemo - I had one last week, opps!

Take care and let me know how it goes Monday,
Alison
x

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Hi Alison

Thanks - will let you know how Monday goes.

The hair is really upsetting no matter how you think youve planned for it. I too have clippers at the ready and although it looks like Ill make it to mid next week might get OH to do some damage tonight while kids in bed. I have been pulling alot out today - curiously therapeutic and some really tatty patches have appeared on the sides as well as my friar tuck top. So its time. Think Ill go for a number 3 or 2 to start with tho.

Real shame about 10th, but on the positive I hope you`ll be well for the week leading up to it, and looks like the weather will be good too.

Really enjoyed our Chinese - we have had a few. Was told by chemo nurse to avoid take aways so as not to get tummy bugs etc. but we always get ftakeways from our local and never had a problem so threw caution to the wind !

We are heading to a no doubt bug infested childrens farm tommorrow to meet some friends - have been to a few of these too whilst on chemo and kept OK, so hope to have a good day out. Probably get sunburnt now !

Take care
Jane

16

Jane

Hope the hairdressing went OK - mines coming out in handfuls now and the kid can’t wait to get the clippers to me.

Have had the most lovely weekend in the sun just chilling with the family - the sun makes such a difference doesn’t it?

Hope you had a good time at the farm - good luck for tomorrow, hope the results are good.

Take care
Alison
x

17

Hi Alison
The weekend was just great - glad you had a good time too.

Hair now down to half inch of whats left (sides and back and fringe), bald on top. Feels much better. Little boy saw it in the morning and declared “your hairs lovely mummy”. What more could I ask for.

Results all OK, tumour reduced in size so good feel factor, recovered from chemo well enough so surgery as planned for 14th. Still a mastectomy as its in 2 places so surgeon wants to play by the rule book. Thats what I expected. But to know the chemo works is good.

For a few times at the weekend we even started to feel normal again - thought this could never happen. But slowly its creeping in.

Looks like the rains hitting the midlands now - but hope its only temporary. We bought one of those swing seats for me to relax in the garden, hope to get some more use out of it soon. Next doors cats love it, but I do too !

Take care
Jane

18

Jane

Good news re results, must make such a difference knowing the chemo’s done what it’s supposed to and tumour has responded well.

Hair still there, just about! Think it’ll have to go in a few days - lovely that your lad likes your new do, what a sweetheart.

Having a little party for my boy on Thursday, as I’ll miss his birthday on Friday (chemo day), and won’t be up for much at the weekend. Looking forward to that and hoping the weather stays good so we can get the bouncy castle out.

No rain here yet so probably on it’s way any minute, better get out in garden quick!!!

Alison
x

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Hi Alison

Hope you made it to the garden to catch some sun.

Had a good day of retail therapy - tret meyself to new pyjamas and matching dressing gown. Then blew it all by asking about mastectomy bras in M and S, why couldnt I have just waited til after the op. Curiosity killed the cat. Held up for the conversation with the sales assistant, acted as if its an everyday thing to be buying. Then things hit me when I got back to the car. Its really going to happen. Was OK when I got home and little boy got home from nursery and paddied all evening about anything - so back to normal for a while thank goodness.

Pre-op tomorrow, then looking forward to lots of good things for end of week and weekend.

Hope your wrapping your parcels for Thursday and getting in those treats.

Take care
Jane

20

Hi Alison
Just a quick note to say hope you had a good party etc. Weather has been great. Good luck for tommorrow and the weekend ahead
TFN
Jane