Starting chemo in February

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I haven’t done anything with my fluffy head yet Lisa. The trouble with shaving it is that I’d also be getting rid of the normal dark hair that is hidden in there. Maybe I need to wait til the stupid white fluff is a bit longer (its quite long already) and trim that. My arm hair never came off - I was quite looking forward to having bare arms, but nope. Still hairy!

Rads number 3 today and YET AGAIN the machine was broken so I was done on a different machine. That’s 3 machines in 3 days! But I didn’t have to wait as long today, only half an hour late. I have a lunching date tomorrow so they’d better take me on time! I spent the afternoon dozing on the sofa today. Can’t believe how tired I am. Not sure whether its still from chemo, or from rads, or a bit of both. Very thirsty too.

Enjoy the younger womens forum tomorrow Lisa. I went to one in March and it was really useful and good to meet people my own age. At chemo and rads, everyone is much older. Which isn’t a problem, but its nice to chat to people in the same situation as you too. Good thinking on the critical illness cover. Hindsight is a wonderful thing, but I didn’t get it with my mortgage. Damn…

Lizzy - how are you coping? Have you got a date for starting rads yet?

Adi - hope you are ok after your taxol yesterday.

I took my first tamox last night. So far, so good (well, apart from the cold, chesty cough, exhaustion and pen all over chest, but I can’t really blame that on tamoxifen!).

Al x

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morning girls

Sal and Al, glad your rads are going OK apart from your delays Al, are you trying to use every machine in the hospital!

Lisa, well done with your mortgage thing you clever girl, and have fun at your forum, maybe you will get some hair advice there. Mine is growing slowly, its very fine but lots of it, and its a kind of ash brown/dark ash blond colour… not my normal colour at all. My pals mums hair grew white and fluffy but then grew normal and as soon as it was long enough my pal (hairdresser) trimmed the fluffy ends off. Don’t know if this helps! I still have hairy arms and legs! I wish they had an ASDA here!!! lol

Adi… how are you doing sweetie, wish I could send a postcard of strength to you.

Chocciemuffin, thanks for your post on the meltdown thread… I think I must be suffering from tax brain. My best freind is a psychiatrist at the Priory in London and she gave me some tips on treating my anxiety before bed so I have had a couple of better nights sleep.

Lesley, hope you are doing OK.

Does anyone know how DonnaP is getting on after her mx?

well, it’s Friday, time to face another day with streaming eyes, my drops aren’t working any more, I paint on eyeliner to over up my non existent eyelashes and it comes off in 5 minutes, I look a bloody mess! Dark glasses to the rescue. Still no start date for my rads, grrrrr.

Have fun on Friday it’s an order!

Lots of love, Lizzy xxxx

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Morning ladies, gosh its taken me ages to catch up with you all and can’t remember most of it! So hope you all managing ok today and planning a good weekend.

Been too poorly to come on here. I thought it was just the chemo making me ill but it turns out got another chest infection. So back on antibiotics as they reckon the first one never really cleared up. Chemo is bad enough without the chest problems no wonder I haven’t been able to leave my bed.

Unfortunately couldn’t have my eleventh Taxol on Wednesday as had temp too. My haemoglobin has been going down every week and they were also going to do a blood transfusion but have put that on hold too due to everything else. Seeing Onc today to see what next step is, as Oncology Sister thinks he may even stop the chemo now as my body is saying enough is enough and problems are outweighing the benefits. It has started to affect my feet/toes and now fingers too. I already have nerve damage in one leg/foot from back operation. I would rather not have any more chemo but niggling doubt in head says will it be enough! Will discuss with him later.

Anyway sorry not written personal messages to you all but now back on I will be able to soon. Lots of love Adi x

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Hi girls, Aldi, sorry you have been poorly, I have had a chest infection too, back on antibitics at the mo. Its bad enough having se from chemo without other problems. The sun is shining here today so might sit in the garden of a bit, hope you all have a lovely weekend. Lesley x

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Hello all,

Well thats 3/20 rads done, wish they would stop drawing on me i feel like a dot to dot!! Its like a flippin scientific experiment when they get there rulers out and start shouting out numbers, dont you think Al?

Work going ok just doing a couple of hours a day but am going for 5 tomorrow as we are short staffed. But next week taking a couple of days off as rads are at awkward times so am going join Al and be a lady who lunches!

Adi sorry you are feeling so rough you really have had the most terrible time, i hope you feel better soon.

Lizzy, I read your meltdown post, i think its perfectly normal after all you are going thru and hope you are feeling a bit brighter now. Maybe time to start jumping up and down about your rads dates or all your tattoos may disappear :slight_smile:

Al i have the thirst too, supposedley pretty common with rads as our cells are working so hard to mend themselves after each daily onslaught. Three days of Tamoxifen now have you started them yet? I keep seeing that packet and thinking…five flippin years of this!! I do hope there was no machine breakdown today and that you make lunch on time…you must be having withdrawl symptoms!!

Lisa…clever girl with the critical illness, fingers crossed they pay you out. I never lost hair on legs and arms and eyelashes are slowly coming back upper ones quicker than lower, but not so much growth on eyebrows as yet. Have a good time at the forum tomorrow…oh what it must be like to be a younger woman!! Although i think i just sneak in at 45!

Well i hope all have a lovely weekend and hope we get lots of sun, obviously i have my factor 30 at the ready :wink:

Lots of love to you all

Salxx

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Sorry to hear you’re poorly adi. I met one of my old hospital buddies on Wed and she had only had 3 of her 6 FEC chemos as each time she was hospitalised with neutropenic sepsis. So she went straight onto rads instead. Whatever decision they or you make, hope it goes ok and that your body gets a chance to recover. Are they still planning to give you a tranfusion once you’re better? I think I may have a chest infection too, my cough sounds terrible and there is a lot of gunk in there, but I’m going to see if it goes away itself. Am taking enough drugs already with the hayfever tablets, sudafed and tamoxifen! Hope the antibiotics are sorting you out Lesley.

I got my rads on the correct machine today, and almost on time! My plan to use all the machines in the hospital has been thwarted Lizzy! So I was in plenty of time for my lunching appointment. Phew. I must buy some tops that cover more flesh though, as some of my many pen dots are visible. Not sure what the point of the permanent tattoos was if they’re going to draw new dots in different places every day! I have a mixture of blue and black dots, plus some lines, though they are at least out of view! I can handle the ruler bit and the numbers (90.2 is my first number that gets shouted out, then I switch off), but would be glad of less pen! Now back home and ready for a quick nap on the sofa once i’ve drunk another couple of glasses of water…

Yes, i’ve had 2 tamoxifen so far Sal. So far so good. Only another million or so to go. Ok, perhaps not a million. I’ve not decided how many years to take it for. Supposedly 5, though oncologist said I can do 2 years if wanting to try for kids. So will have to see how I’m doing in a couple of years time…

Good luck with your work Sal and more importantly, your lunching next week! I’m quite glad I’m off at the moment as I’m too tired to concentrate enough. I use up all my concentration driving to and from rads.

I’ve given up with eyeliner Lizzy and just do my eyebrows (which also are usually wiped off by the end of the day). I’m sure you look fine though, and at least its sunny enough there to wear shades! You have a good Friday too.

I might go and sit out in the rare thing that is called sunshine now.

Al xx

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Hi everyone

Hope that all your SEs are going away (far far away!). I finished my FEC over a month ago now and am starting rads on Monday - I’ve had a few good weeks forgetting about treatment and now its back to it all - though I know it won’t be as bad as the chemo.

My hair (which I kept quite a lot of) is growing back (fuzzily) in the bald patches and I’m going to the hairdressers this week to have it cut short and even it out a bit as my longer bits keep blowing around in the wind in a crazy fashion. Eyebrows are quite sparse but have been filling them in with a pencil. No downstairs foiliage though! (Lizzy)

Adi - hope you feeling better - 10/12 chemos is pretty good and it will have been having a good effect along with all the bad ones.

Have taken tamoxifen for a week (which I was quite apprehensive about) but not noticed any SEs yet…

Off to have a kebab now (I am making an effort to eat healthily most of the time - honestly! and it is a chicken one so that’s not so bad is it?!) Take care yourselves.

Lots of love
Helen

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Hi Helen, good luck with your rads tomorrow. And I am sure you will feel better with your new haircut.

Oh Adi… I do hope you are feeling better. I am sure the treatment you have had so far has blasted everything, wow you have had so much. Let us know what your onc says.

Al are you eyes still streaming, mine are worse than ever and I feel pretty yukky today, my chest hurts and my head and throat, think its the old mucotosis raising its ugly head again. I thought I would be feeling almost normal by now!!

I have my blood test here in town Tuesday morning (first time not in hospital) and hoping my portacath doesn’t foil them too much. Is anyone else here on herceptin only now? I can’t remember. If I haven’t heard from rads by friday, I shall go in while I am at the hospital for my herceptin and ask them again, it will be 3 weeks this friday since my last tax.

Al, Sal & Helen, they told me to drink 2 litres of water a day when I start rads, did they tell you guys that? What kind of soap are you washing that bit with? Did you get special cream to put on?

What happens when our treatment is over? A friend asked me this and I couldn’t reply. He said his friend had a catscan. Do we get a scan of some sort? My mammagram didn’t even show this lump i had so I don’t trust that. My aftercare will be in the UK so I am just wondering what next?

Everyone else on here, have a lovely Sunday. Its very muggy here and quite unbearable, or maybe thats just me lol.

Love to all xxxxxx

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Hi February Friends, just about back in the land of living!

Lizzy sorry to hear you having so many other issues to deal with as well as waiting for date for rads. Sending you a big hug to help you through this tough time. I was under the impression that rads start four weeks after last chemo. What has everyone else been told? My Onc also told me that I will get a check up every 3 months for the first year. Not sure if this is the same for everyone. Hope your eyes get better soon too.
Sal - glad you had a wonderful holiday. You are well on your way with your rads which is good news. I intend to do phased return to work too,not sure how that will work but can’t see me going full time as soon as treatment is over. Major change from not working at all to a busy job. Will have to take one day at a time. Hope yours works out ok.
Al - I am so impressed with you - lady that lunches!!! Well done you. Will be doing the same as soon as well enough. Hope you are coping ok with the rads now and not breaking any more machines:~) lol!
Lesley - chest infection has been awful but thank goodness for antibiotics. Know exactly how you have been feeling. Hope you have got over the worst now.
Lisa - At least you can still pull! and well done on your critical illness cover. Sorry to hear you still suffering after you last chemo.
Helen - Good to see another Feb lady start rads. Hope it goes well for you. We never know what to expect really.
I will not be having any more chemo. So I can say I have officially finished being poisoned!!! Onc decided that enough was enough and my body could not cope with anymore and doing too much damage. What a relief as I do not think I could have coped being so ill for two more weeks. To be honest I am not sure if I was so ill from chemo or chest infection in the end. It was just too much. I was a little apprehensive about not having final two but I trust his judgement. Phew! Start rads in about four weeks await appointment. So all I am due now are two scans and removal of portacath. Can’t wait to start rads (25) and get back to some form of normality. I will also be taking Arimidex for five years. Blood transfusion on hold for now but being monitored. I do feel so much better today, first day I have been up for a good part of the day for some time.

Hope you all have a good week and no more SEs for anyone. Lots of love. Adi x

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Hi all.

Lizzy - yes my eyes are hurting and itchy and attractively bright red! I’ve had some cotton wool pads soaked in cold water on my eyes while lounging on the sofa this evening! Its nice for about a minute then the heat off my eyes/face warms the water up and it loses its magic. Need to find a slave to run to the kitchen every few mins to fetch me a freshly cooled pad! Where is OH…?

For rads, I’ve been told NO creams are to be applied. I was allowed to use aqueous cream or aloe vera gel before I started rads, but nothing during it. Though I get a weekly ‘examination’ of my skin at the rads place and if they think I need something, they will let me know. I’m allowed to wash with simple soap only and to pat dry with a towel. And to get no sun on the big square they are zapping, which means high-cut tops or staying in the shade. And no deodorant on that side. Rules rules rules! But they said you were less likely to get problems if you stick to them, so I will be a good girl. They didn’t tell me to drink lots but my body has told me that it is very thirsty, so I’ve been drinking at least 2 litres a day I reckon. And if its hot over there, you’ll def need it.

Sorry to hear you’re having chest/throat/head aches too. I’m still taking daily hayfever and sudafed tablets as I have similar issues but I think its just a cold/infection and hayfever. Still knackered too, but with good reason today…

I went up a mountain! It was a lovely day and I hadn’t been up in the hills for ages, so we headed north and went up a small-ish mountain (over 800m but thats probably small for Scotland). Had to take it pretty slowly but was quite pleased to reach the top. Had disco legs on the descent - if anyone has ever climbed they will know what I mean. Shaky legs. Mainly cos my muscles haven’t been used much. Then went for a nice cold pint of shandy in a beer garden, only spoilt by the pub not giving us chips. Only if you order a main meal can you have side orders. Eh? That’s scottish hospitality for you! So a nice day out but I think I’ll need my bed soon!

Good luck with rads tomorrow Helen - I’m sure they will go well. And I hope you like your new haircut.

How are you doing now adi? Hope you’re recovering from the h*ll of taxol that you have been through. Ah, i’ve just seen your post. Glad you have got over that hurdle and make the most of those 4 weeks before rads to catch up on steroid-free sleep. I could have done with an extra week before mine started to shake of my post-FEC tiredness but at least it means I’ll be finished sooner.

No herceptin for me lizzy so my veins belong to me again. Ha. I’ve got a physio appointment on Fri to sort out my misbehaving veins too.

Lizzy - once my treatment ends, we have a group meeting with other people who have just finished treatment which gives you an opportunity to ask questions. Think its just with the BCNs. I have asked for a scan as I didn’t get one at the start despite having affected nodes, but I’m not sure if they give out routine scans. Then I’m booked in for a mammogram (am dreading it as it hurt so much last time) in Jan 2012 i.e. a year on. Every hospital is different so perhaps you could get a contact number for the hosp you will be going to and speak to someone there?

Hope everyone has had a lovely sunny weekend too, and that the aches and pains and lingering SEs aren’t causing too many problems.

Al xx

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Hi everyone, Helen good luck tomorrow with your rads, I have my planning on the 14th then start at the end of the month. After chemo I dont think rads can be as bad. Im still coughing & on antibiotic but feel so much better than last weekend. I even managed to do some gardening today even if I did have to keep stopping to rest, god I hope this tiredness goes soon, I feel 100!!!.I wish my hair would start to grow back soon, its one of the things I have found so hard to deal with, & Im going to see friends this weekend that I havent seen since I started chemo, I moved from the midlands to wales 12 months before dx. Just hope they dont look to shocked when they see me(fatter & bald not a good look).Im sure they will all say the right things(you look so well!!)Im turning into a right misery. Have a good week, the sun is still going to shine Lesley xx

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Morning all,
Well everyone seems to be on the mend, slowly but surely and thats good news. My eyes are doing my head in now, everyone thinks I’m crying whereever I go. I am going to try and bath them in saltwater… it sounds harsh, but when my cats had runny eyes it was the only thing that worked. You may hear the screams from there!!

Adi, my onc said 3 to 4 weeks after last chemo for rads, I think I am just being a little impatient as I need to coordinate my move to the UK… I am a Virgo what can I say, or as my mum used to say… a picky little virgo!!

Sal I am so impressed, up a mountain indeed, well done you and your legs!! I even avoid slight inclines when I am walking my dogs and we live on the side of a mountain… don’t think I will be up it for a long time!

I have been told to get a special cream from the pharmacist to put on each day after rads, but wash off every morning before the next session with soap without additives. I wonder if I can use dove soap? I think that has moisturiser though. I guess I will have to get some from the pharmacy.

Well girls, I am so pleased that you are all making recoveries, and Adi glad the bloody chemo is over for you now. Hooray!!!

Lisa, your mx is soon isn’t it? How are you feeling about it all, are you enjoying your time inbetween, I hope so.

love to all, have a great week.

love lizzy xxx

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Hello all. Thought i’d better post something as we had slipped down to page 8 on the latest posts. I haven’t done much though so not much to report! I’ve done 7 of my 25 rads sessions, had a day off on Tuesday for machine to be serviced so did some nice lunching that day! This week has been much quicker - no machine breakages. My boob is getting sore though. You can see a nice pink square emerging already and its a bit itchy. But still not allowed to use any creams on it. Got told off at my weekly clinic appointment yesterday for wearing an underwired bra so I have found a non wired one and going bra-free while in the house. Easy when you have small boobs I guess…

How is everyone doing? I think we are now all done with chemo but not everyone has started rads yet? I’m finding that I fall asleep in the afternoon when i get back from rads, so quite glad I’ve been signed off as I’m obviously tired. I have a few tiny eyebrow hairs appearing! And the white fuzz on my head is getting longer but not any darker. Bah.

Have you had your start date for rads yet lizzy? I’ve seen you on Lulu’s fb page so I might friend you if that’s ok? My eyes are doing the opposite of yours just now - they feel like there is no moisture in them at all and are still itchy. So have some hayfever eye drops so will see if that works. Also have a few tiny eyelashes coming back and I don’t think that’s helping as they are probably digging into my eyeballs…

My legs have almost recovered from my over-exercise on Sunday. Have been very lazy this week (weather is back to being very wet) so must attempt a gentle walk when there is a break in the rain.

Hope you’re doing ok in the run-up to your mx Lisa. When is it again? Are you going to be in hosp overnight for it?

Al xx

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Hi Al, our thread has gone quiet maybe we have all been resting. I have certainly been sleeping for the world. Bit disillusioned! I thought that once chemo finished I would be back to normal. No, No! Just as tired so I guess will just have to keep resting. When I read that you had already had a few rads I wondered where I had been, then realised that they are daily! Just shows how brain has slowed down these days. Interesting that you got told off about the underwired bras. I have a drawer full of them and wondered if I could ever wear them again. Why did they tell you off, is it beacause they are bad for us, or too early for you to be wearing them? Would be interested to know as have heard so many different stories. Glad you still managed one day of lunching:)

Hope everyone else is ok. Take care all. Adi x

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Hi girlies,

Al, yes please friend me on FB that would be nice. I have been told that rads will make us tired! I was told to stop wearing underwire bras since my first op back in November, so I changed and now I love the ones without wire and not sure if I will ever go back. They are so comfy and I look a better shape in them too!!!

I have my first solo herceptin tomorrow, so I don’t have to be there til 9.30am which makes a refreshing change! A new regime to get used to. Still no rads start date so tomorrow I will ask my Onc and then nip to the rads dept and check with them too. Had blood drawn at the local medical centre for the first time… what a palaver! I was first in and last out. My portacath certainly confused them. The first guy said, ‘can’t we just take it out of your arm’, I said no, look my veins are gone. ‘Then what about the other arm’ he asked! Duh! No you are not allowed to do that except in an emergency I told him. ‘Oh well, you will just have to wait til the end then’!! Bloody idiot. I think the girl they sent to take it was her first time, she had every tool and cotton pad, bandage you name it laid out on a sheet over my legs. Then at the end she put two different types of clear liquid in and asked if that was right! Hell if I know what you just injected straight into my jugular vein! Oh and she forgot to cap and tape down the tube so I was covered in my own blood… note to self- do not wear white blouse when having blood taken!! I am going to ask my BC nurses tomorrow about the clear liquid! and maybe pass on some pointers!

My eyes are still running like mad, and I too was wondering if it was the beginnings of something in the eyelash department. I have about 4 black spiky stubs all pointing in different directions on each eye…they do not resemble eyelashes at all!

Goodnight girls… trying to sleep in this heat, it is unbearable. You sound much better now.

love Lizzy xxx

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Good luck tomorrow Lizzie. Not many nurses are trained in taking bloods from portacath, amazing isn’t it? They need special needles. I was given one with my pack when I had it put in. Have to say that if I go to my GP I just let them use my arm,(like today) but then again my veins are ok as portacath was used from day one for chemo. Do hope you also get your rads appointment tomorrow. Keep smiling even if hot out there. Chilly tonight. Adi x

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Lizzie, that sounds awful, the things we have to go through seem to get worse, but you have better luck next time. My daughter has just come home from madrid for 2 months, & she cant get over hoe cold it is here. Im going back with her in september for a week so hope the weather in spain is still nive & warm then, I certainly need a hoilday after all this. Have a good weekend everyone Lesley xx

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thanks guys,

All went well, my blood is good, red cells better than ever apparently!
Yes it is very hot here, hottest July in 80 years they say!!! My Onc said to me again, ‘you are not allowed to sunbathe’ hmmm, I’m not really sunbathing just helping my little one in and out of the pool!! When I go in she feels me from the top of my head, down my neck, shoulders, under arms, back, chest, tummy… very thorough. I haven’t dared ask her what she is feeling for!!! Had a little lump under my armpit but she said it’s just a lymph node… pheww!

Went to see Rads people but they have been having problems with one of the machines for 2 weeks and everything is backed up, so I just have to wait! I guess it gives me longer to get over my achey legs and runny eyes.

Hope you all had a fab weekend, lots of love Lizzy xxxxxxx

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Glad your blood is doing well Lizzy and hopefully next time they try to extract it they will do a better job of it!

Spent 3 hours at hosp today for my rads and physio appointment. Yawn. Physio appt was supposed to be first but for some reason didn’t appear, then the rads were running late. Then i had to go back to the physio a second time so had to get some lunch there in between. My chemo vein has been manipulated a lot which was sore but hopefully will help. I’ve also been ‘taped’ - they put this japanese kinesio (?) tape on my arm, which basically looks like a giant elastoplast. Back to see her early next week to see if her manhandling of my arm has helped. So far, it hurts more!

Need a quick snooze now. It is probably frustrating for you that you’re waiting for yours rads to start Lizzy, but I sort of wish I’d had a longer break between chemo and rads (i had just under 3 weeks) as I’m still totally knackered from chemo and now also from rads.

Enjoy the heat over in Spain. Here its one big long thunderstorm and torrential rain! And not very warm.

Hope you all have a lovely weekend.

Al xx

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Hello all,

Sorry for not posting for a while, these bloomin rads are taking it out of me! I honestly truly am more tired than when i was on chemo. Dont know if its the daily travelling, the rads or the Tamoxifen but i am wrecked. Am working but only sporadically. Am slapping on the aqueous cream and so far so good, bit of a tender nipple but nothing i cant manage.

So to be honest what with rads and work am not managing to do much else, cept plan what to do when rads is over!! So the plan is to go off up to scotland on the motorbike for four days straight after rads, i cant wait have been planning our route and it looks lovely.

Al I hope the taping works i have heard of it before, but never seen what it looks like. Hope your rads are going ok. How many to go? I have done 9/20, halfway tomorrow yippee.

Lizzy, I thought i would get a telling off from rads team about my tan, but they never said a word. Oh lord what a carry on with your portacath but well done for getting that first herceptin under your belt!

Adi, Glad you are all finished with the blesses chemo girl. With regard to underwired bras, its only whilst you are having rads that you have to go without, just to stop irritation i think.

Lisa, i am sure your mx is sometime soon so if you are popping in to the forum and just reading, good luck with it all, am thinking of you.

Lots of love to you all,

Sal xxx