chemo kicks off 20 May - any good buddies?

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Hi Ladies

I should of been at the hospital today for my first visit for radiotherapy. I got a phone call yesterday afternoon. They have said, because i am only half way through my chemo the radiotherapy will be delayed until October!!

Nicky - thanks for the advise for radiotherapy i will keep it in mind for October. I am on the TACT2 trial. My second half of chemo is with Xeloda tablets. The tablets are taken for 2 weeks then 1 week off, for about 3 months. Have to take 12 a day, so will be rattling everytime i walk LOL. The side effects are similar, but can vary from person to person. I will take one day at a time.
Lisa - Please keep us informed with the waxing. Sounds like your dad is starting to worry :wink: I think they are brave, but heroes for such a good cause.
Lily - Glad to hear that you have improved. keep your good humour coming this way :slight_smile:
Bevy - Good luck with the 2nd Fec tomorrow. I decided not to have the cold cap also like Angie. I took this decision because i was told the cold cap does not always work and can be uncomfortable. Once my hair started fallen out i just shaved the whole lot off. I know in time it will grow back :slight_smile:

My thoughts are with all of you if your next treatment starts this week.

Take care

Kirsty xxx

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hiya all - why is everyone going on holiday, think thats why Im in the dumps, not that ratty could cope with the heat but anything away from the chemo would be great - scared already as I know only two more left then rads, then the week after overies out - terrified already Im such a wuss, its always the fear of the unknown and think they might have to tie me to a bed this time. Plus side is Angie, soz, found my vien first time this time without the use of scalding hot water, fingers crossed they hold out for last two, bonus is bloods are checked re a little prick and squeezing to the finger,

Well better get on, been at work since 9am and feeling pooped with stiff fingers and sniffles - oh to be on hols eh! Hope everyone bearing up and Lily, good luck, Im almost as scared as dentist as needles !
xxxx

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Dentist or needles thoughie I say.

Why’ve you got to have the ovaries out a week after finishing Lisa? Sounds like bu**er all time to heal to me. I know it’s a key whole op most of the time but it’s still anaestheic. I’d be putting my foot down about that unless it needed to be done so fast… did I miss summat?

back to work.

A

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Hi,
You know Lisa, snap I am terrified of the dentist too, but the pain made me brave for once. I am in awe of you working through this, I cannot even remember what day it is. I am pood off with people going to nice holidays too, especially if the insensitive bu…ers say ‘I am only going to…’. Try not to worry about the op just yet, concentrate on getting through the chemo first, then rads. How many will you have?
At the dentist I saw a very nice young Mr Patel, who seemed to think my medical history was fascinating and was so gentle and kind. The offending tooth was an old crown and he says one side had been sheared right off, leaving a sharp metal edge that would cut anyone’s mouth let alone mine. Can you imagine what happened to my mouth when they sprayed that drying stuff?I got stuck in the open position until the saliva kicked in, really horrible feeling. Just wondering if the broken crown was a going home present from surgery? When I went to reception he had said not to charge, which was an unexpected kindness. It is such a relief not to be hurting every time I swallow and i thought I might cut it open when I sneezed. I have a go fast (no cheeky comments please!) blue stripe down the side of my tongue that aches like mad. Sure it will go quickly now. The other symptoms are progressing too slowly for my liking but heading the right way.Was offered a hospital appointment but was forewarned that they could only treat me if examined, so stayed home. Have been told too ill to have next treatment so postponed by a week and they are reducing the dose too. I see the onc on Thursday and if he makes the right noises and my results are ok, I am out after 6!!! That will still be another 4 doses and blood tests and is quite daunting enough. Will have to review this if things go differently I guess.
Kirsty I think someone made a mistake with your dates because you will be at home for the last ones. Lots of luck, are you any good at swallowing tablets? You have to keep your feet cool at all times with xeloda, even in a shower don’t you? Angie sorry to hear about missing the vein and you fainting. I know exactly how it feels,except they get me straight in the chest when they miss. Made me feel faint too. The nurse said’ ooh the way you just looked at me then’. Yes sweetie it was that or I was going to stick that hubber needle in your boob and see what you think it feels like!! Hope you are not too bad with this one anyway.You are always so busy, well done. Bevy hope your bloods were ok and you get the next one done. I stuck with the cold cap for 4 treatments and was very happy right up to a week ago. I have had more loss with epi 4 and it is on one side of my fringe, which looks odd, may have to go for the wig still. I am glad I used it as having some hair just made me feel more like myself for 3 months and got me used to the idea.Hope you are ok Lorraine and thank you for your kind thoughts. Nicky I am wondering whether to go away for a day or two to the coast not too far, in case MIL gets worse. What did you think of Eastbourne?
Take care everyone
Lily x

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Hi Lily

I was wondering how you were doing. Sounds very painful and I hope it’s been sorted now as well as all the other cr@ppy symptoms gradually going away. Don’t blame you at all for wanting to stop sooner than the trail is for. We’re all the same but different in this if you get what I mean. None of us know how we’ll react and how we cope with these bl**dy awful chemicals and the worse they get the more we dread them. I don’t need to tell you to take it easy but make sure you do and give yourself a treat or 2 to make you feel better.

Eastbourne was very nice and gentle so the right choice for me at the moment where I didn’t want to be surrounded by too many noisy people. I did play ‘spot the different colour hair’ on the promenade as there was a sea of grey sitting down! Made me feel very young! We were impressed how clean and tidy the seafront was, didn’t venture into the town as only there for the day and stayed elsewhere in the end so can’t comment on the hotels. However there were some very nice looking ones right on the seafront, including a Best Western and a Travel Lodge which looked OK. If you want to push the boat out check out The Grand! Lovely long promenade to walk on with a mileage marker to know how far you’ve gone and nice flowerbeds etc. We then drove up to Beachy Head, quite a walk from the beach part but OK if you’re feeling fit and have the time. Fantastic views from there and a pub at the top! Angie had previously sent me some links to walks around Eastbourne on this thread so probably a few pages back from this one if you want to check them out.

I found 1 night away - which gave us 2 days, was just right to re charge the batteries and we knew the weather was a bit iffy (tell me when it hasn’t been!) so didn’t stay 2 nights. Also we were lucky that it was very breezy and hadn’t been forecast a lot of sun/heat so it was probably quieter than if it had been glorious - again suited us to a T! Well worth a trip out if only for the day as I don’t think it would be as far from your neck of the woods as from ours.

Typical that the H has had the last laugh - bet it was saving that up for your last Epi :wink: At least if you did have to wear a wig it presumably wouldn’t be for too long if your H starts growing back after Epi is over?

Hope all goes well for Thursday and you’re not getting too nervous. I hate waiting for any results these days, even my onc gets asked ‘Are my bloods OK?’ before I’ve even sat down! At least you get an extra week off before any more chemo although this is a bit of a double edged sword as it makes the overall treatment time longer but my advice is make the most of it especially as you’ve had such a rough time this round of chemo.

To everyone else hope you are all doing OK and looking after yourselves, after all we are worth it :slight_smile:

Nicky xx

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hiya

Angie - the ovaries op is cos there’s a lot of history in my family and they need to have my periods stopped before I can go on Arimidex I think anyhow, I didnt realise would be quite so soon but decided not just to try and concentrate on what’s coming in the weeks first rather than further ahead.

Lily - ouch sounds painful, glad you have your go faster stripe and you have a bit of a break from treatement to try and get your strength back up as sounds like you have been hammered with the side effects this time - hope I dont twin you next week!

Nicky - glad you had a nice hols
xx

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HI all

Sorry I havent been on fro ages but have been having a pretty cr p time finished epi 4 a week ago and it hasnt been too bed having the hickman line in made big difference even though its a pain. But psycologically Iam floored everything has been happening and wont go into too much details but keep wondering why am I putting myself through this and for who and what. I feel as if I have been stripped of my total identitiy my hair scars on the only bit of my body I was happy with no eyebrows no lashes getting fatter by the day when I look in the mirror i dont see me any more just a no body looking back feeling sorry for herself.

Iam sorry to winge but no one here will lusen I hope some of my friends on here will

Joanne

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Heya Joanne, I think I know where you’re coming from. I’m personally accepting that it’s not me looking back at me, it some poor beaten up echo of myself for now. I’ll be back, as will you, but it may take a bit.

How much more you got to go hun.

I’m having one of those not enough money, everyone wants it, I can’t do good enough what’s the point in even loody trying says too.

I call it attempting to do mental activity while on FEC and Dex. almost impossible… This isn’t us talking though is it, it’s some deeper tired chemo patient holding us hostage.

Sound right to you.

One thing that’s kind of a saving grace is the chemo nurse said yesterday that dex can make you retain water so it may not be all fat after all.

Not much of a consolation is it :wink:

Lots of love

Angie

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Hi Angie

Know the feeling about money loan company refuses to compromise so fell behind on payments only advice, advice centre gave me was sell my house. I have 8 cmf to go and them 29 rads so still long way off and as iam a dlivery driver my work wont let me back till iam all finished so catch 22.

Joanne

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Ah Joanna, that’s a really bummer. Who did you speak to for advice? I’ve used nationaldebtline in the past and they were great, very honest though.

I found that my bank makes noises about being supportive etc but it’s cr@p. I opened an account with another bank last year so they didn’t have me over a barrel and am moving away from them, during this time I found that they never even did credit checks, they just looked at their own system and refused to give me the deals that had the lower interest rates saying I couldn’t afford them, but they happily carried on with the arrangement where I paid more interest, apparently I can afford to pay more.

You really have to make sure you’re getting independent advice? Are you?

I’m just invoicing everyone who owes money and putting my head down to try and get the work done but actually it’s not going so great :frowning:

Angie

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This is the thing with this desease not only does it try to destroy you physically but mentally and financially too when you first get your dx you never take into account all the other things that come with it my best friend and others avoid me now saying things like “I dont want to crowd you, last thing you need is everyone crowding you” my friends crowd me so much I rarely see anyone. God i;m I feeling sorry for myself just now. Hope you get on ok with your invoices.

Joanne

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Sounds like you need a good kick up the jacksie… Nope that doesn’t work, tried that on myself. Don’t bother with that one :wink:

I expect those friends just don’t know how to handle it. I’ve gone the opposite way, avoiding people myself so I don’t have to keep repeating “Yes, I’m fine, yes it’s the same as the last 3 doses but slightly worse, and yes you are f***ing annoying me because you’re talking so slooowly and I’m on steroids… speed up man”.

What would you normally do to cheer yourself up?

I’m personally going to go rob a bank or something, I could use one of those buffs as a balaclava and I’m sure I could find a wig somewhere :slight_smile:

Hope you think of something to cheer you up… I’m going with it’s only money and money don’t matter tonight in the words of the artist formerly known as prince (seriously why not just change your name eh;)

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Hi Joanne

So sorry to hear you’re having a rough time of it all. It really is the pits isn’t it. I know what you mean about the mirror - who is that person? I can cope with the hair loss as I wear my wig but my eyelashes and eyebrows are going and I hate that washed out look it gives us. Currently using eyebrow pencil and liner to give some definition so I have a few features left on my face!

Money issues are also something we don’t need at this time when there’s nothing we can do about them. Are you entitled to any statutory sick pay? I don’t think it’s much but it could help. I work on a contract basis so don’t get paid unless I work. It’s not so bad as OH is main breadwinner but have missed the extra that I bring in as I’m on very reduced hours right now.

Maybe your friends don’t know how to handle things? I have a group of friends who live nearby - some I can talk to about anything and others I’d rather not so I pick and chose when to see them. Can you call any of yours for a coffee just to have a chat? Having said that even my close friends have no idea how awful this is and often say stupid things which, if I wasn’t so bl**dy nice, I’d have a right go at them for. Just thinking I’d like to still have some of them left when this is over!

As Angie says, anything you would ‘normally’ do to cheer yourself up? Don’t know about you but I’m looking forward to the Olympics which I can watch guilt free this time. Glad it’s in their time zone so events will be on in the afternoon which will be good next week when I’ve got my next chemo - something to distract me for a change.

Please do have a moan on here as we really do understand what it’s like and if we say anything insensitive you can fire right back at us!

Take care

Nicky xx

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Hi Everyone.
quite upset reading all the hurt you are all going through. Frustrated that I cant actually DO something to help.
Lily sorry to hear all your cr@p, you come across as an amazing lady, always concerned for everyone else and believe it or not, your sence of humour always shines through, whether you are aware of that or not!!! Good luck with appt with onc. today, will be thinking of you.

Joanne, know what you mean about friends… to have or not to have! It takes up a lot of much needed energy to keep everyone happy, you find yourself more concerned for them, trying to be up when you really arent up to it. often I prefer my own small corner of the world, like a little mole, gone to ground. I have two old dogs, they keep me company and take me as I am. They do get me up a couple of times in the night now though, toilet visits, gets to us all in the end!!! I can now get out of bed, go downstairs, let them out, go back to bed… and still have my eyes closed, good or what!!! Just nobody move the furniture… A friend and I took them to a pet shop last week. They have a small shower room on the side where you can take your dogs and wash them yourself. Brilliant. They provide shampoo, combs, towels etc. Dog hair up the walls, floor, sides etc. It was a battle to see if I could get the towels over the dogs before they managed to shake and shower me, oh joy…It was great to shut the door on the mess, worth paying 9 pounds for 2 dogs! Now they are leaving bits of fluffy hair all over the carpets, think they are coming out in sympathy… bless them???
Re money probs, have you been to citizens advice. Phone them and make an appt. to see someone re debts etc and take all your paperwork with you. Also (if over 50) Age concern have someone to talk to re benefits etc. Dont do anything with house until you have all the facts. Do you know if you are on all the benefits that you are ENTITLED to. ? Also my cancer dept. has someone from benefits who goes there once a week n we can make appt to see her. Does yours do this?

Nicky, I also love watching the Olympics, have been quite sporty myself, ran Dublin marathon at 46,(now 52 and couldnt catch a bus…) can sympathise with their pain and have a small understanding of what they have gone through to get where they are. Cant wait for them to begin. I will be behind our people all the way, even if its on my bed, chocs, biscuits, crisps at side, (unless its the 1st week after chemo!)…

Take care, wish my thoughts could work miracles,
2nd chemo of 8 on 14th, way to go but on the right track

Chris x

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Morning Ladies,

Well what can I say but the thrush is back already, ah I had blissful relief for about a week. Gonna have to get back on that candida diet and I kinda knew this point would come but I had the flucanozole (the kill thrush with 1 pill) last week and the cream and while the chemo nurses said that I could do it again as I’m under medical supervision I know what this really means. It means I have no so**ing friendly bacteria left so this is the point I cross to the dark side.

I am now taking limited homeopathies to stop this stuff or I am not finishing the chemo… end of.

Other than that a bit chirpier myself today, preparing for the onslaught of people who will be coming to the lowther driving trials (horsey people as in horses and buggies, fun if it’s not raining which it will be). Going to have to hide in and work this weekend as I slide into the low week with half a million people visiting a village that usually has about 600 people!.

Hope you’re holding up OK girls, if not come get angry, itchy angie to come defend you, I’ll bring the dog.

Ah animal washing, thanks for that Chris, needed a laugh. You should have seen it when I used to wash the persian cat. It was almost seal the shower cubicle door, get in with the thickest dressing gown (claw protection), get out dripping wet (more me than the cat) and rapidly wrap towel around cat before she’d recovered enough fight to bring out the claws again. Don’t even ask how we got her dry. No animals suffered in the cleaning of this cat… unless you count me of course :wink:

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hi everyone

hi lily 2000
so sorry you feeling rough, maybe missing one, will bring you back on parr. at least you might be able to plan a few days away. hubby and i went to worcester yesterday, i was feeling fatigued so didnt enjoy it as much as usual, but hey i did it, and at least hubby and i had that precious time together.one good point about this, is nobody tries to make you feel guilty when you are bone idle. if its a choice of housework or going out, i know what wins anyday!
dont worry too much about leaving ml, if you were by her side 24/7 the moment you left the room something could happen, so it doesnt matter where you are, and im sure she would want you to live your life.

nicky 08

i so know what you mean about eyebrows and eyelashes, why has nobody invented false eyebrows. ( i asked bc nurse if they were available and she said “not that she knows of, but you can get a false piece for the lower regions.” who cares about there! maybe we could get one and cut it into eyebrows, ( or maybe not who wants curlies) i like you am trying to use eyebrow pencil, i even brought false lashes but they have to be put on top of your own.AAAAAAAAAAAgggggggggggggh!
i give up, i will just be bald, lob sided and fat! have you found 5th treatment any easier?

all you other girls take care and spoil yourselves what the hell!

lorraine.x

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Hi Lorraine,

If you would like to give the helpline a call I’m sure they’ll be able to put you in contact with someone from BCC’s Headstrong team who will have information about where you can get help with the eyebrow problem. Helpline number is 0808 800 6000

Hope this helps.

Jo, Facilitator

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Hi Everyone

Joanne - so sorry that your feeling low. Sometimes you feel like you are going through mental and physical torture. I hate looking at myself in the mirror a stranger keeps looking back at me!! I keep saying to myself that it will soon be over and just to take one day at a time.

Nicky - glad you had a nice break away. It helps to have time out :slight_smile:

Angie - glad your feeling chirpier apart from the thrush. Do you take part in the driving trials it sounds interesting?

Hope the rest of you ladies are feeling okay and HUGS to those who need them.

Kirsty xx

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Hi Lorraine

Luckily my eyebrows were of the bushier variety before I started, a legacy from being a teenager (when was that?) when I had them too thin and, as they weren’t even, they didn’t look too good. So they are thinning like my hair at the moment and I’m colouring in (or joining the dots!) in the gaps. It’s working OK and does make me look less washed out. As to eyelashes I may resort to false ones if I have hardly any left although a post I read ages ago from one lady said the glue pulled all of her own lashes out! Apart from vanity I may use them as I wear contact lenses and they’d keep any dirt and grit out of my eyes if my own had all gone. I haven’t had FEC No5 yet - thank goodness, don’t think I’d have coped so soon. It’s due next Thurs and I hope the bone marrow stimulant injections were worth it. I’d like to keep on track for my last 2 even though it’s easier having them 4 weekly!

Nice to see you were out and about and ignoring the housework! As you say it’s the one time we can be guilt free. I generally feel OK once my bad few days have passed but I can always play it up a bit! I guess you’re just getting over FEC No5 now, do you go straight on to Tax-whatever or will this be something you have another time? Also are you on any biphosphonates when you have FEC?

Take care and hope you have a good weekend - I intend to as it’s ‘the-one-before-chemo’

Nicky xx

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Just wanted to say have a great weekend Nicky. Glad you got the extra week, I’m becoming very aware of what’s going on now, still no nausea etc for me but things are taking a lot longer to heal and I’m having to be extremely careful now re little cracks on corner of mouth that won’t heal…

still I worked out that I have 2 weeks until 5th FEC so only 5 weeks until the last drugs are in and I can then start to pic up the pieces… it’s just over a month… something to look forward to isn’t it… finishing :slight_smile:

Lots of love and have a great one ya’ll

Angie