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starting tomorrow - why me!!

17 REPLIES 17
HelenL
Member

Re: starting tomorrow - why me!!

Hi Ladies

Just thought id share my experiences with you (esp Bev). I DG on Ot 31st 08 with 3.1cm lump, Had WLE on 13 Nov and was lucky enough not to have any lymph node involvement. Lump was HER+ so under NICE guidelines for me to be accepted for the wonder drug Herceptin i had to have Chemo and Radio 1st. Im on the E-CMF regime. I was absolutly full of fear as it was a step into an unknown world. Had 1st Epi on new years eve! Got home around 7pm and was just waiting for that sicky/ill feeling to arrive. I was extremely lucky (and with the help of the 3 different anti-sickness tablets given) that i have not experienced any of the awfull side-effects mentioned. I have a 6 and a 1 yr old so to me this was a godsend. As i felt ok i returned back to work after the weekend of 1st chemo and have worked since (through my choice- understanding boss). I know that i am very fortunate to be in this situation and no i am not wonder woman. This is the way that i have choose to face this awful disease, i am not going to let it rule my life where possible. Had my 2nd Epi yesturday and did feel very sicky last night so went off to bed at 7pm. Feel ok again today and hope to go back into work tomorrow. Im just taking 1 day at a time but for me i just want as much "normality' as possible. I decided not to use the cold cap as i didnt want to be in Clatterbridge for any longer than i needed to be (fantastic hospital) and i went to hairdresser on sat and had my hair cut to a bob and my wig styled to my shoulder length hair (before being cut). I went into work on Monday with my wig on and all the girls thought i had just had my hair coloured (slighter darker shade). Must admit after 8 hours started to itch a bit so once home took it off. My little boy hasn't noticed and my partner thinks it amazing. On day 22 now and my hair is alot thiner and my parting is getting wider!. Carn't run my hands through my hair as im left with handfulls of hair everywhere. Havn't decided yet whether i will shave it off suppose it depends if i or everyone else in the house gets sick of picking up/eating my hair!
Please don't think that i am disrespecting all you ladies who have not been as lucky to get away with less side effect but i just wanted people to know that there is a remote possiblity that they too might be as fortunate as myself.

Kind Regards
Helen x

Louise_BCC
Member

Re: starting tomorrow - why me!!

Hi Bev

As Irina rightly points out, BC is covered by the DDA and, as such, employers have to make reasonable adjustments to accommodate an employee's disability.

Here is the link to Breast Cancer Care's information regarding the EMPLOY Charter which you may find a useful read:

http://www.breastcancercare.org.uk/content.php?page_id=5260

I hope you find this helpful.

Kind regards.

Louise

ForumMember
Member

Re: starting tomorrow - why me!!

Bev,
Just wanted to echo what Helen said - BC is a disability under the Disability Discrimination Act so your employers cannot sack or demote you for any reason related to your BC, and have to make reasonable adjustments to accommodate your needs. Please get the EMPLOY booklet from BCC, it is excellent. I work with the DDA day in day out and it covers LOADS of things so please don't worry about work xxx

Fletchjet
Member

Re: starting tomorrow - why me!!

Hi Bev

Not sure if you are aware but cancer is covered under the disability at work act. Your emplyers would not be able to sack you for be unfit to work. they would be in a relly difficult situation if they tried as a court case would be really easy to bring against them. I found my employers were really supportive and were happy for me to reorganise my schedule etc to fit around treatment etc.

I am glad that you haven't had toomany problems with after effect etc, what i found was that the effects - tiredness etc tend to get worse as i went through the cycles. It tended to be week one 1-7 days recovering from the chemo (initially it was the first couple of days only by the end of my chemo it was all 7 days) week two was feeling a bit washed out (bit like you do if you've just had flu) and week three was feeling pretty normal. what I did discover was after the first couple of cycles i began to dread the approach of the next one (because the novelty of the treatment day etc had worn off and you know how s##t you will feel once you've had the treatment. the day of the treatment I was like a bear with a sore head to my partner. I don't do sick - mum was a nurse and you had to have a proper disease to get a day off school!!! so found not being able to do the things I would normally do very frustrating. You really have to pace yourself or the chemo will make you rest whether you like it or not!!
i have had me chemo and radio now and have found that the muscles have tightened accross my chest and its limiting my arm movements - can't do my bra up easily or reach certainshelves etc so now working hard at physio as the restriction is drining me mad.
Anyway glad to see you are keeping your spirits up
Kind Regards
Helen

highlandlady50
Member

Re: starting tomorrow - why me!!

HI hope you had a good weekend, I went to see a lovely lady today in Bury regarding wigs, she really put me at ease, I had purchased a couple off good old e bay, but they are nothing like the ones on the photo,s at least I managed to try on the right style today even if not the correct colour. How are you getting on with the chemo now, I just feel really kn@@@kered after only trying to do a few things, today was visit hairdresser, walk dogs twice, go to tesco and discount warrehouse and that was me then for 3 hours resting, I think this is the real thing I am finding hard to deal with. I have not felt as sick since Sunday just a bick icky first thing in the morning but I suffered from Morning sickness when preggy anyway but the tablets do help. I really want to get back to work but as I don't do a sedentry job am really worried if I will be able to cope with all day rushing about, but still they have requested me to go for update nect week, so will probably sack me on grounds of unfit for work, that will really help matters!!!. I am not going with cold cap either, can't be sitting about in hospital for several hours with a freezer on my head, when I can be in and out in an hour, probably if it was guaranteed to keep the hair I would have considered it. Whens your next chemo, mines 5th Feb, going 2nd for blood tests, and another set of moans that my veins are no good I suppose. Just waiting now for the day 8 stage, thats supposed to be yet another low when your blood count plummets but I have been drinking actimel and eating plenty yoghurts to keep up get bacteria to help, have found thatnthey constipation has not been as bad as reported, but only just getting my apetite back after the chemo, but weight not falling off..typical!!
Anyway chin up lets keep upthe fight
Bev x

muv70
Member

Re: starting tomorrow - why me!!

Hi had my first chemo yesterday which went very well, felt very sick & had headache (which I never suffer with) yesterday evening, but went to bed early took tab this morning and don't feel too bad. Hopefully thats my side effects over? Didn't use the cold cap as thought too much hassle and no guarantee that I would keep hair, can't believe I made that decision when the thought of losing my hair was the thing I focused on immediately after diagnosis. I had hair cut and wig to match so that the transition should go smoothly. I plan, like you Linda, to shave head when hair starts to fall out, which I know will be traumatic but necessary.

Anyway hope all are having a good day and looking forward to the weekend, hopefully I will be able to watch my 15yr old play rugby on Sat (so no lie-in!

Liz x

Scotsmomma
Member

Re: starting tomorrow - why me!!

Hi Highland Lady...just wanted to wish you luck with your treatment...I started my Epi on December 23rd...had the second dose on Tuesday gone...so far so good I've been really lucky with mine..had no nasty side effects at all....I hope you are the same with yours...I honestly feel so well right now....My hair started to fall out bigtime last week so my husband took the clippers to it on Tuesday after my chemo....I thought I'd be traumatised having it all off....but we laughed during it....a sense of humour during all this really helps.....I'm now used to my bald head....I prefer my zandanas to my wig...more comfortable around the house...

Fingers crossed that the chemo's kind to you

Linda x

highlandlady50
Member

Re: starting tomorrow - why me!!

HI ladies, thanks for replies, it just seemed to real today before its just been something thats been removed by surgery, but the thought of the chemo suddenly made it a lot more serious. I have been lucky - as far as the cancer is concerned- discovered early had a lumpectomy with 2 lymph nodes removed, but they found cancer in one of them so back in for 2nd op 1 month later to remove another 20, but thank god they were clear. The oncology was daunting how to choose what treatment, I opted for the E/CMF which will take longer but the thought of the new one that is being used in France that flattens you for 5 months scared me, I was being selfish I have horses and judge at horse shows all over the country in the summer and just felt that with the treatment I chose then I may be able to have a near normal life inbetween the sickness, constipation and the other side effects being thrown at me. Probably the hardest decission was having my hair cut short, but I also took the 2 wigs I had purchased to the hairdresser and she has cut the shorter one for me to wear all the time, the longer one (which I really love) we are saving for special ocassions its 27" and will look just great put up when I go to dinner dances. I know that I am going to have wobbly days but today was just a real hard hitting its happening to me, tears, anger and a total feeling of being alone, I just felt that I had nobody to talk to, OK I have my partner but he can only hold me and try to comfort me, I don't think anyone understands exactly whats going on in your head unless they have been through it, trouble is I don't do ill !! It was bad enough trying to keep me resting after my ops, I have ponies and dogs so just have to get up to do things, and I have kept a puppy from my labrador litter she is 3 months old, so I am hoping she will help me get through this. Well thats it, off to have a shower and try to get some sleep, have loads to do tomorrow morning before my appointment, I have started to keep a diary, which I hope my children (31 & 21) may want to read at a later date or should I have any friends who are unfortunate enough to be diagnosed it may help them come to terms with it. Thanks to you all, god bless and here's looking forward to 2010!!

Fletchjet
Member

Re: starting tomorrow - why me!!

Hello Ladies
It is a long journey you are embarking on - I know as I have travelled it. I will not fib there will be dark and difficult days but there will also be better days too. Do not be a martyr to any side effects, the hospital will not want you to have to contend with any side effect that they can help with - even if it seems trivial to you at least tell them. There is always someone here to listen to your concerns and fears and to celebrate the good things too - and there will be some.
Do not be too hard on yourselves, learn to pace yourself. I used to do lists of all the things I wanted to do in a day and soon learnt to halve it - some days it got halved again and some days I managed everything. But I learnt not to be hard on myself for not finishing the tasks.
If someone offers help - ACCEPT IT
I did learn that if I pushed myself too far (when that little voice of reason says you have had enough and you are silly enough to ignore it! ) then it tended to lay me out completely the next day.
Remember it is not a sprint it is definately a marathon.
Let us know how you all get on
Take Care
Helen

brightlight28
Member

Re: starting tomorrow - why me!!

Thanks Mal for your words of experience, and kind that you have contributed here to those of us just starting out.

Yogi - I had 5 out of 11 nodes affected on one side. I understand this puts me in a poorer prognosis category as cells may already have escaped through the lymph nodes though the mastectomy was clear at the margins. I have invasive ductal carcinoma - classed as grade 2 (but mix of 1 and 3 as well) and tumour was 4cm.

I am lucky that I have a supportive partner who recently took early retirement and have no dependents other than a part time cat. I am age 42. I have been writing on the hair loss strand where I have met some great friends. But shall write here too now - as we are all starting on the chemo phase together.

Bright x

maltomlin
Member

Re: starting tomorrow - why me!!

Hi there

From someone who's almost finished treatment. I can relate to how you are all feeling and I'm sure all the other ladies on here can too. It's so scary. I had a lumpectomy in june and total node clearance (3/24) and started chemo in July. I remember going for the first and being so scared I just wanted to 'leg it'. Two days after my chemo I thought they'd given me the wrong drugs as I was sitting waiting for the SE to kick in. I did feel awful for a week after each chemo but it's a question of battening down the hatches for a few days til you feel better. And it does pass (very quickly). Now it's like labour - forgotten til someone mentions it.

As for the hair - I shaved my head when it started coming out and was glad that I did. The NHS wig made me look like Maggie Thatcher but I bought a brilliant wig online which I am still wearing everyday.

You will get through this. It seems a very dark tunnel when you first start out but it does get brighter. I'm nearing the end of rads and think back over the last 9 months and it's gone very quickly. Two weeks today I finish the rads and hopefully get my life back as I've felt that someone had pressed the pause button but is gradually releasing it.

If I can do it anyone can.

Mal

yogibear
Member

Re: starting tomorrow - why me!!

We all seem to be very similar with our chemo treatments, how many of your lymph nodes were involved? I was 5/29.
Brightlight...I had bone scan yesterday too and am also scared of results,didnt sleep at all last night thinking morbid thoughts... was told about a wee for results. My CT 'appears clear' which I had to question..it either is or it isnt. They say there may be a small nodule on my lung but could be cos I used to smoke. I will have another one after rads. Good luck and let us know how you all get on.

Helenofherts
Member

Re: starting tomorrow - why me!!

Hello ladies,

highlandlady the fear set in for me yesterday. I keep feeling like I'm going to burst in to tears!
I was diagnosed in September, I had 2 ops in October and November and start chemo on Friday after I'm fitted with a Hickman line. Chemo should have started in December but on the day they could't find a vein so sent me home again. I was all geared up for it then, it was such a let down. Now I'm more nervous, but with the help of the great women on this forum I know we will all cope with this awful disease.
I saw the "wig lady" at the hopital yesterday, she's ordered a couple of wigs for me to try, it should take a couple of weeks till they arrive then I get to keep the one I prefer.
I'm having 3 FEC and 3 Taxotere.

Good luck

Helen xx

brightlight28
Member

Re: starting tomorrow - why me!!

Hello I had surgery and reconstruction (tissue expander) on 16th Dec and 2nd Jan and start 3 FEC and 3 Tax next friday and know just how you feel. Me, my main concern is waiting for the results of CT and Bone scans (find out next Wednesday) and losing my hair which is long. I am going to try the cold cap, I have nothing to lose in using it (except my hair) and may end up keeping enough to stave off needing to go for head coverings. That said I have already bought a custom made wig with similiar length, colour, density and hair quality to my own and saw a wig fitter today who cut it for me. It is very convincing and makes me feel better and takes my mind off next Friday. Good luck for tomorrow.

Bright xx

yogibear
Member

Re: starting tomorrow - why me!!

Hi to you both,... highlandlady, I think that you are brave to have your hair cut. My timings are similar to yours.... I had my first op 12th Nov then full node clearance 10th Dec. I start chemo next Monday 19th and see nurse tomorrow about wig etc. I wont be having cold cap either but have put off having my hair cut. Think I am still in denial!
Muv..gosh that is quick ! I am having 3 x Fec 3 x Tax..
Will think about you both tomorrow and very best wishes x

justme
Member

Re: starting tomorrow - why me!!

Hello Highland Lady, Most of us here will know how you feel (been there and done it), and yes, it's all quite normal!

I finished my chemo a year ago, and just like you, had shoulder length hair which I had cut to jaw level before chemo began. My oncologist does not agree with the cold cap, so it was not a choice I had to make, and I started to lose my hair about 11 days after my first FEC chemo.

It all seems so overwhelming, and like all of us, you will be tearful and wondering if you will ever get through it all, but you WILL. Take it all one step at a time, and count down the number of chemos, don't think too far ahead. It's not pleasant, but you will get through it, and will have given yourself the best possible chance of this horrid disease being zapped hopefully for good.

One year on, having had 4xFEC and 4xTaxotere, 15 radiotherapy treatments and almost one year of Herceptin, I have a full head of hair, eyebrows, lashes, and am feeling well. I did have to have a mastectomy as I had one lymph node involved, but even that hasn't been the end of the world.

Good luck with your treatment...you know where to come if you need support!

xxx

muv70
Member

Re: starting tomorrow - why me!!

Hi, I can't see your message, but I too am starting chemo tomorrow! I was going to start a thread but you've done it for me!
I'm having FECx6, how about you? I only went to see the chemo nurse this morning for ECG, bloods etc & info and thought I would start sometime next week, then she booked me in for tomorrow morning at 11.30! At least I don't have too long to worry, I sort of thought I would have at least a few days to get my head around it!
Are you going to use the cold cap?

Good Luck!!

Muv x

highlandlady50
Member

starting tomorrow - why me!!

Today it has really hit home, feeling angry,upset and tearful, start chemo tomorrow at west suffolk hospital, thought I really was dealing with this OK but decided noy to have cold cap as no guarantee that hair loss will not happen so this afternoon I have been to get my past shoulder length hair cut to up neck, all the fears and emotions are starting to well up, you can only put on a brave face for so long I suppose, have a couple of hours to pull myself together before the family come home for tea, is this just me or do you all have this happen. I was diagnosed on 4th Nov had 1st op on 14th on and then a second on 15th dec to remove more lymph nodes, thankfully I did not have a masectomy but still feel upset when I look at the different sizews and shapes of my breasts. Somebody tell me that it is normal for me to feel this way at the moment.