About to start chemo

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Hello all

Sarah, what an experience! I have been really envious of your home treatment… not so sure now! So sorry you had such a rotten experience. Only 4 more hospital visits doesn’t seem so bad when you know they are the real experts. (Always finding the positive… but in this case a good point too)

I have justcome back from the headstrong session. The ladies were very helpful. One free large cotton scarf, and I bought another, and a little silk filler to add to the decoration. Lots of really positive ideas that will help a lot, as my head is too big for most hats! My OH bought me a lovely cotton scarf when we were on holiday a couple of years ago, and with the help of those ladies I have turned it into a great turban. Feeling pleased 'cos I know he’ll like it.

Sarah, the shave comes when you say to yourself that you can stand thin hair, but not looking like Golum! That was the point for me. One really low day, then I was able to get on with it.

As always we are getting through it. Complete with the ups and downs. Keeping up with you girls is making a difference for me. Have a great weekend, and look after yourselves.

Love
Ann

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Hello Ann and Sarah

Sarah Nice to hear from you…but AAAAAAGH what an ordeal for you, I can’t believe it. Glad you finally got it done and also that you weren’t sick like last time. I too have requested stronger meds for this time. Has the crash come yet? Bear up and remember it doesn’t last. (sorry I sound like a St Trinian’s teacher lol) As you say you’re still standing and remember we are kicking its *rse. As I said to Ann, your cancer hates your chemo even more than you do. I bet you look fab in your wig.

Ann Glad you are feeling a bit better and hopefully they will go ahead Monday. The Headstrong event sounds wonderful! Especially if you don’t feel comfy in hats. I look a right dork in them, but love my buffs and turbans and wear dangly earrings to balance things out. Take it easy and get yourself over this throat thing.

I have been out all day so am tired, my hair started to fall out but only in wisps. I had my head shaved a few weeks ago and then chemo was delayed so it has grown back, got my husband to shave it all off for me today, I am now a Velcro-head and feel much better, isn’t it strange that we all feel so differently about this issue.

Have a good weekend, both

Love Louise

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Hi Ann and Louise

Thanks for your comments, both have cheered me up, I am having a “weird” day today, I have a brick in the stomach feeling and have rested more this time than last, I am waiting for the crash and think its on its way!!! Last time I went out and drove my car on the Fri, Sat and Sun, but this time it has stayed on the drive, think this is also due to cold and hair loss!!! The headstong event sounded good Ann I have not heard about those, maybe its a different area to me. Yes I take your point about hospital if one does not succeed there is another nurse waiting so it does increase the chances of them getting it in, I just thought It would relieve the pressure as I am hospital phobic and needle phobic even more now!!!

Any way I am trying to think of nice things in the future I have a caravan in wales and I am hoping to open it up next weekend if I feel well enough to drive 2 hours, then on my good weeks I can get a bit of sea air and a change of scenery keep me going, should be interesting as I have just had (well 8 weeks ago now) 2 rescue kittens to cheer me up. Lost my last cat last year big blow. They have never been to the caravan so it will be intersting and stressful to see how we all get on. I think it will do my Mum good too, as this is a strain for her too, as you have probably gathered I live with her.
I know what you mean about the hair issue clinging onto a few wisps is a bit ridiculous really!!! I tried the buff on again today mmmmm, I just look so awful in hats NEVER wear one!!!
Just rang about broadband again it has been delayed again probably why I never went to it in first place too much hassle.

Any way have a good weekend and hope it goes well for both of you next week on Mon/Tue.

Love Sarah x

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Hi Sarah

I am adding the details of the Breast Cancer Care ‘Headstrong’ service kindly mentioned by Ann. They give practical tips and information on looking after your hair and scalp before, during and after treatment. You will be able to try on a range of hats, scarves, fringes and hairpieces in a comfortable and private environment. You also have the opportunity to buy selected items of stock. As well as being free, you can attend as many times as you want – and you are welcome to bring a companion along for support.

For more information either click on the link below or contact the helpline on 0808 800 6000.

breastcancercare.org.uk/content.php?page_id=2458

We have also published a booklet about hair loss containing useful tips and hints which may also be of some help to you, you can read it via the following link:

breastcancercare.org.uk/docs/hairloss_2004_v2_0.pdf

Best wishes
Lucy

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Hello ladies

How are you feeling Sarah? the worst will be over soon. Just think about the caravan!

Did you go ahead on Monday Ann? I went and did number 2 today, feel really wowy (steroids) so am waiting for the big hit.

Will report back when I come up for air

love Louise

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Hi Louise

Have come out of the black hole now. I did feel worse/different this time, and I know what you mean about wowy. I hope you are ok?

Yes I am going to van on Sat armed with nephew who if I feed him enough will do all the heavy work LOL, and I can relax!!!

Keep going Louise there is light at the end of the tunnel.

How is hair? I went out in Wanda on Tues, felt very strange at first, nearly crashed car as thought I could not drive in the wig!!! But once I convinced myself no one was looking at me I felt ok have worn it twice more since, and it gets better.

I am not going to be a hermit!!! It did take a testing on Wed with wind!!! I met my neice from school, and I felt like I had to hold on to a corner surepticiously in case it took off, I had my scarf round my ears and walked briskly through all the school kids, I thought I cannot do this to her it would mortify her!!! But we all survived!!!

Take Care

Love Sarah x

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Hello Ladies

I had session 3 on Monday. Blood tests were ok, but the quantity of medication just seems to keep going up! The first day after is so much the worst. After that, maybe I’m just not very patient with myself… After the blood cell count drama last time I have to inject myself for 4 days, but hopefully that will keep everything under control. I am finding the steroids days worse than coming down afterwards, it just feels good to be nearer myself. I get very weepy, though, which is just not like me. The physical side just has to be tolerated, but the emotional upheaval is hard.

I found a source of great turban / scarves- Suburban Turban. Worth looking at their website. Their hats seem pricey, but the tie scarves are great, and look really smart. I am wearing them at work, and can cheerfully dismiss all thoughts of wigs now.

Sarah, I hope you have a great time at the caravan We have a tiny tourer which we intend to give its first excercise of the year over Easter, so this weekend is preparation time.

Louise, looking forward to your coming up for air. Hope you are feeling better now. One more down; one less to go.

Much love

Ann
x

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Gosh you are both caravan girls!! I am afraid I was rather put off after our last static hol where we took my two teen boys and my husband’s one teen boy…and it rained all the time so we were stuck with them all. Not to be recommended…the SMELL apart from anything else lol.

As you can see I am Ok, I seem to be repeating my pattern of morning sickness but I am usually Ok after 11. This gives me an excuse to lie in. Steroids have finished but at least I can go to the loo! Also had a couple of glasses of wine last night and I don’t have that same yukky taste as last time. I definitely feel better on this cycle. I hope to go out tomorrow for some fresh air and to stretch my legs. Two down and four to go. This time I was in a ward with a few much older, very ill-looking people so I felt a bit guilty that I looked so blooming in comparison.

I have booked to see a counsellor in a couple of weeks. Before dx, I had been training to be a counsellor myself, I have had to defer Uni a year because of dx. I think I need a bit of help myself before I can get back and help and support others, I need to get my head round what has happened to me.

Sarah: Well done on the wig! Whatever you feel comfy with. I have little hairs coming out all over the house now and am being bald at home and just turbans/buffs outside. Your nephew will be a big help tomorrow, we have my 13 year old booked to demolish our old shed on Good Friday.

Ann: Poor you with injections! Although if it stops you having any more delays then I spose that’s something. Glad you have got number 3 done, I like the steroids as they make me feel very other-worldly but then I do worry that I am not myself.

Hope we all have good weekends, girls

Love Louise

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Hi ladies. just been reading this thread, as I couldn’t sleep. I will be starting chemo in a few weeks time ( 3 weeks? ), and thought I had better gen myself up and get some tips. I am absolutely dreading it, as I can get panicky taking any unknown medicines, worrying about the possible side effects! I am such a wimp.
I hadn’t even thought about losing my hair. Does that always happen?
I’m still in a slight state of denial that this is hapening to me, I think. But maybe that’s my way of dealing with it, not looking too far ahead.
How do I find the thread with the Top Tips?
Love and hugs to you all, and may we all develop a huge sense of humour to get us through. I need it!
Ann xx

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Hello Ann

Sorry you had to join us, but welcome! You will find lots of support on these boards and we will all get through it together. Your first chemo is the scariest, after that it is not so bad.

I have bumped up the tips thread it is called Top tips going through chemo and is excellent. Hair loss depends on what cocktail of chemo you have. Some people have a thing called a cold cap which literally almost freezes your scalp and reduces the risk of hair loss, I didnt bother but many people try it.

Yes one step at a time…sorry you couldn’t sleep honey, hope you feel a bit brighter today and can relax a bit

Louise x

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Thanks, Louise.
I managed to go back to sleep and I’m feeling brighter today. I’ve realised I musn’t look upon the chemo as an enemy, but as a friend to kill off the cancer. That’s helped me. The side effects are temporary, and it’s worth going through with it.
Also, realised there are hundreds of women undergoing chemo every week, so I don’t need to feel alone. I am sure I will make some new friends through all of this,too.
Think I need to relax and enjoy to the full this time I’ve got before I start treatment, 'cause I’ll probably be too tired to do anything some weeks. Think I’ll try some gardening, and a walk every day ( weather permitting! ).Glad it’s springtime, and the Easter weekend coming up.Let’s hope we have some sunshine to cheer everyone up.
You ladies on here are all so wonderful, so encouraging.Hope you are all doing well.
God bless, Ann XX ((((hugs)))) to you all.

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Hello Ladies

Louise, I’m glad this one went better for you. It is astonishing how quickly the ‘routine’ is understood. I wish I could agree with you regarding the wine, I used to enjoy a glass of red, but it tastes really bad now, so have pretty much given up! A lot of tastes have changed, and I am not eating much meat. I don’t suppose that is a problem, as am experimenting with some tasty veggie meals. OH is up for whatever is served…

Sarah how was the weekend at the caravan? I hope it was good, I thiunk you had better weather than we did in Surrey (at least I hope you did).

Ann, welcome, you will find much support, and some whacky ideas on these threads, but hey, if it makes you smile, that is always good! However you react is fine, and you can see that we all are very different in coping, but cope we do. It is a process to be endured for the better. And it IS worth it!

I have been really tired this weekend, so have done almost nothing. The upshot is that we have delayed taking the van out, and will stay at home over easter. The forecast is pretty grotty at the moment anyway.

Much love
Ann

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Hi Ann and Louise
Glad you have both survived your next dose.

Welcome Anna, sorry you have had to join us here but like Louise and Ann have said there is lots of support and cyber friendship here.

Poor Ann about the medication and the injections, I know what you mean about not being Patient afterwards, I am like that too also about meat I have almost gone off it too not that I ate much in the first place! Jacket potatoes and beans and cheese seem to be my staple diet at the moment!!! Glad you are a vanny person too!!! mine is static and the weather was appalling it is Wales though, I got stuck in the mud on Sat so my car is speckled brown!!! Ann you have every right to be emotional, I too have never cried so much in my life, I think it is good to let it out, they even told me that at the hospital, so bawl your eyes out when you want!!!

Hi Louise, glad you are feeling a bit better, hope the walk and fresh air helps wrap up warm though. Yes me and the Wanda survived Wales it met people I have not seen for ages and I bluffed my way through telling people how great I was lying about work etc I did feel awful but I only tell the people I want to know, it must be ok as someone I am close to who I was telling about my cancer said “but your hair is thicker than ever now” I said no … it’s a wig!!! she nearly fell off her chair. I know what you mean about the sickness too it vile first thing isn’t it?
Don’t feel guilty going for counselling if you it will help which I am sure it willl I had counselling a few years ago for a stress related incident at work and I thought it helped me immensely, where else can you sit and cry for an hour and not be told to “pull yourself together” or “keep your chin up” LOL Sorry about your hair I still have this little downy covering a bit like a duck I suppose, won’t go out like that but its ok for house or garden or covered with a buff. Mat is now the buff expert he spent ages at the van tying it in all the styles and modelling it he can do far more than me it’s funny how kids pick these things up quicker isn’t it?? Don’t feel guilty about feeling well either I know what you mean about some people who look so ill, I just think I do not want to look like that and if I can I will prevent it.

Hi Anna
Hope you are sleeping better and are coming to terms with it? I think the weeks before chemo starts are probably some of the worse, it is the waiting and the unknown that is frightenening, I think once you start it you at least know what you are dealing with and we are all different. I couln’t sleep still can’t some days, but once the deed was done I thought OK here goes. I did lots of nice things before chemo started I was feeling well after op so I planned days out saw friends and did my shopping for chemo some things have worked others have not. I also always have a nice day out before the chemo cylcle starts again, then I shut down for a week!!! But as you can see I am now fit enough to drive 2 hours to Wales so it is doable. I was in denial too and, it is a huge shock when you get that DX I felt as if my life passed before my eyes, and as for WIMPS I am the biggest one out there I just say to people I am a baby so they know, if you had seen me going to theatre OMG It was so embarrassing they almost had to strap me to the trolley the anethetist has probably never got someone under so quickly!!! I wrote a poem about my feelings it’s on here somewhere it’s called picking ME UP Again I will see if I can find it and bump it up.

I am off to Wales again tomorrow for a few days so won’t be around for a while.

I have just had to ring work they have sent me yet another fixed term contract which I have been on for 6 years I pointed out that it was illegal and that they had not even got my job title right!! So I am getting a new one, with right title and stating Fixed Term not temporary!!! as for the legality they said take it up with the manager (who has not even bothered to ring me once since I was DX yeh right!!!) Still I suppose I am lucky they renewed it being off sick!!!

Hope you have a lovely Easter

Love Sarah X

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Hello Ann, Sarah and Ann

Firstly, Happy Easter everybody. Yesterday (day 9 of cycle) I finally woke up feeling full of my usual verve so I think that is number two knocked on the head and hopefully there will be a good 10 days before the next dose. The weather forecast is not good but my husband and son are in the middle of demolishing our rickety shed and laying the foundations for the new one. And Good Friday sounds like an excuse for fish and chips to me!

Sarah Don’t know when you will be back from the van but hope you had a good time, as you did on the weekend with your nephew. It must be hard for you not to tell people and to appear cheerful. I just tell EVERYONE, lol. I was out for lunch the other day and a chap complimented me on my snazzy pink buff headgear, I explained, he said a close girlfriend of his was going through chemo and was v poorly, he said “You look really well, keep going and God Bless and hope you get well soon” and put his arm round me and kissed me. It really impressed my friend, who saw all this from afar and thought I had pulled! Anyway your wig is obviously fab. I think counselling will do me the world of good, I don’t always share my worries with husband and friends cos they would be upset and worried themselves so it will be nice to let it all out. Your poem is great, by the way and so, so true. Hope you are feeling Ok and ready for the next blast, is it Wednesday 26th?

Ann Mc Hello Ann, hope you are OK. I see you are staying snuggled at home and not risking the caravan, well the weather forecast isn’t very good is it? Our neighbours have gone to the coast in theirs, eek! Well the injections are over for you for now HOORAY and hopefully you are feeling well now and can enjoy a few good days, will your next be Tuesday cos of the Bank Hol? Sorry to hear about the wine taste buds suffering, just think in a few months when chemo is ended and you get back to normal, how lovely will that first glass be? It seems that we have to have things taken away to really appreciate them again (like that first shower after the operation!) I am just so hungry all the time, last time I couldn’t eat but this time I could happily eat six large meals a day if I let myself. Isn’t it strange?

Ann G How are you? Have you managed to get some gardening done before the snow showers start? I was also told to look at the chemo as my friend. I find it hard to do that, so I look at it as an annoying elderly relative…I have to have him to stay half a dozen times but that means he will leave me something in his will, lol. Have you got a date for your chemo yet? My next one is April 1st, I made a gaffe, I said very loudly “Oh I will get here and you will say April Fool, you haven’t got cancer after all” There was a “tumbleweed” sort of silence, whoops. Anyway I hope you have a great weekend and make the most of this bit of time.

Love to all

Louise

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Hi Louise, thanks for comments. You made me laugh about the chemo being more like an elderly relative! hehe. I expect that’s how it will be. I’ve actually decided to think of it as a disinfectant, like dettol, that needs to be wiped over. Leaves a smell, but you know it’s done the job! I’m trying not to think about the chem too much, but yet need to steel myself for it. Do you stay on a special ward while having th chemo? How long does it take? Do they bring you something to eat or drink? Do you feel alright whilst travelling home afterwards? I’ll have a half hour journey. Don’t want to be sick!

I’ve to go for a CT scan next week then I should have my first oncologist appointment soon after.Hopefully it won’t have spread beyond lymph nodes. ( 4 out of 13 involved )
I’m expecting chemo to start about 6 weeks after op,to allow wound to heal. Do you think that’s about right? maybe they check your wound then decide?
I’ve bought some summer flowering bulbs for my garden,but it’s too cold this weekend to be planting them.Hopefully the weather will warm up soon!
Take care, have a lovely weekend. I love the support we get on here. it’s really helping me, and can be quite addictive in the nicest possible way!
Ann xx

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Hi again Ann

Depending on your cocktail of “elderly relative”, it only takes just over an hour to administer your chemo provided they get a decent vein for the canula.I believe this is harder as the treatments go on. I wouldn’t drive afterwards, honey, you may feel light headed. I have felt pleasantly drunk both times! They give you an anti sickness with it so any nausea comes later. Mine started about six hours afterwards the first time, and they gave me better meds the next time so I was even better. I get the bus to the hosp and my husband takes me home. Mine is in a special room with up to five other people in, they can be having longer lasting treatments so it is weird to just pop in and out when they are there for ten hours. Take water with you and also some sweets you like, mints or fruit sweets as you can get a yukky taste as it is going in., Drink lots of water before, during and in particular AFTER, as much as you can stand.

That sounds about right 6 weeks after, it could be a bit longer than that depending on your wound, I had a leak and mine was about 8 weeks after.

Protect those plants fom the snow! I want to plant out a flower bed with some alpines but not all the plants I choose will be so hardy so I will wait a bit too. Have a nice rest of weekend, I am doing a bit of socialising, we were out for a meal last night, pub tonight and then family Easter lunch with our friends and their family.

Love, Louise

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Hello Louise,Ann and Sarah.

I’m Paula and I’m 34, I’m married with two children who are almost 3 and 6. I was DX with BC on jan 2nd and underwent a lumpectomy on the 10th. I had my appt with my onc yesterday and I’ve decided to do the chemo thing (3FEC and 3Taxotere) I’m terrified and really scared but know i have to do it to give me the best chance of never having BC again.
Reading your threads is so inspirational and I hope you will help me along the way.
I don’t have a caravan but went camping 3 times for the first time last year and loved it. I too enjoy gardening!!
Loosing my hair is a bit of a sacry thing too, but I’ve been trying on bandanas and my son thinks I look like a pirate - so if he can deal with it then so can I. I’m worried too about not being able to look after my kids, but I’ve got good support out there and I’m also terrified about the side effects as I like to be on the go, but as you’ve all said its worth it!!

Please keep in touch,

love Paula

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Hello Paula

Welcome and sorry you had to join us under these circumstances. Well done for being brave enough to countenance chemo. We will all get through it together and as you say, it is giving us the best chance of no recurrence. Yes the first time is scary and also cos you have the two different cocktails then there are two “first times” for you, but we will support you. Think of it as a time investment for a healthier future for you and your children. I keep thinking oh it is only 5 months out my life and it will mean so much to get through it all. It puts things into perspective as well, I don’t get so stressed about small things and I look at other people and think for heaven’s sake it doesn’t matter…

How have you been coping, with having younger kids? Mine are 18 and 13 and I also have a saint of a husband, I really do hope you will be able to get enough help and support as you go through chemo, people DO usually want to help, it is about us being brave enough to ask. Will you also have radiotherapy? I have been really cheeky and already started a radiotherapy rota, as I will need to travel for this and I have been surprised and touched by the number of potential chauffeurs coming forward.

The hair loss thing is a real bugbear to many people. It hasn’t bothered me that much, I like my headgear and although my 13 year old finds me embarrassing, the upside is that if he is really naughty I tell him I will come to school bald, that usually brings him into line. So choose something that you feel comfy in, some people like wigs, some bandanas etc.

I smiled when you talked about your camping and gardening, you are obviously a very active person. I am the odd one out on this thread as I am the most indoor person in the world and the other ladies put me to shame. The only real connection to gardening that I can truly claim is my resemblance to a slug!

Hope your weekend is going Ok and you are managing some nice time, make the most of this now before the treadmill.

Love Louise

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Hi Ladies
Happy Easter Hope you all managed some chocolate!

Welcome Paula, sorry you have had to join us under these circumstances, I too am having 3 FEC and 3 TAX, so I know what Louise means about there being two firsts.

Well I am back from the freezing depths of Wales, and it was cold, snow on mountains as I drove through them today. I cannot believe how cold it was, but we survived, I have come back feeling very grumpy and not looking forward to this next one I am at the ONC tomorrow then bloods, to see if they are up to it. Then all being well it is off again WED. I think it is knowing that you will feel crap for up to a week that does it, then like you Louise you come out of it and feel great again, but its knowing what we go through and after all the trouble last time with my veins I am petrified now about that.

Mum had a water infection whilst we were away so we did not really do anything she ended up at the emerg doc!!! So I thought I would come back refreshed but instead I feel deprived of my hol!!! I know Louise like you say it is 5 months and then it will all be over. You made me laugh about being the inactive one and like a slug!!! I am sure you are a very nice slug in your buff!!! I too love gardening but have not ventured down the garden yet to the green house to see if my surfinias have survived the frost.

How is the hair loss? I still have this little downy covering. Mum being ill announced that “her hair looked worse than mine now!!!” Thanks MUM!

Wanda paraded round the caravan park and no one batted an eye lid!! My friend from Liverpool who is not there yet said what shall I tell people I said nothing they don’t know or tell them to mind their own business!!! I just cannot bring myself to tell people I do not know. I like the idea of the elderly relative Louise also glad you like my Poem. Has the shed been demolished?

Hi Ann MC how are you doing?

Hi Anna

I think Louise answered most of your questions I had my first chemo about 7 weeks after the op they have to make sure the wound has healed, but I delayed mine a week as it took me a week to decide whether to have it or not. I agree about the water and mints and sweets I also suck an ice lolly!!! As it helps the taste, I never get the drunk feeling and after the last one I had to drive myself don’t recommend it but if you read my experience you will see why. Mine takes about 1 1/2 hours to administer and I have to be hidden away!!! But there is a kind of ward I think every hospital is different, it depends where you are, I am not sure if we are allowed to say where we live on this site? I try to eat a light breakfast but not too much else, I then stay on a plain light diet for about 4 days I work on the principle that if you don’t eat much there is less to bring up!!!

Hi Paula

I think the hair loss is scarey but I think that thinking about it is worse than it actually happening I cried for ages thinking about it but when it started to happen although I was upset I did not cry, and like Louise says some people like wigs others buffs and bandanas, it is personal preference, so good luck will they fit you a wig? Although I don’t like Wanda the Wig it is a good look a like to my hair I used to spend £38 having my hair cut every 6 weeks think how much I am saving I just shake it now!!

Hope you all continue to enjoy Easter and the snow!!!

Love Sarah x

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Hello everyone
Hope you all had a decent Easter. Ann Mc how you feeling? Paula, hope you join us again, AnnaG did you manage to get out and about between the snow flurries? I have had some nice lunches out (my stock in trade) and also seen some friends. My stepdaughter was coming over to bring our baby grand-daughter but sadly there was very heavy snow their way. I am working a couple of days in the coming week but will take it steady. Then am due my next blast on April 1st.

Welcome back Sarah! You hol sounds a bit stressful with your Mum’s infection, still at least Wanda held up. I haven’t had any choc cos really I don’t like it and actually I can’t really be a slug cos they have an aversion to salt and I really like savoury food! I saw on another thread that one lady referred to her bald head and round shape and said she looked like an overgrown baby. I actually think I look like Matt Lucas, do you remember years ago he used to be on that programme Shooting Stars, playing the drums, wearing only a nappy? The mind boggles! As to hair, you know I shaved it quite short, well I have a bald patch on top and two at the front and also one at the back which means that I stick to the leather settee if I sit there, and I look like I have the mange lol. Still having to shave my legs though, that’s a bit of a bummer.

Well Sarah, I will wish you luck for the coming days, I am not surprised you are dreading it after last time, tell yourself that things can only get better, you are in expert hands at the hosp and just take it as steadily as you can. So this is your LAST fec??? Hooray if so!

Love to all

Louise