chemo kicks off 20 May - any good buddies?

Hi all

What an awful time some of you are (still) having. Really feel for you, esp Lily and Kirsty, doesn’t rain but it pours syndrome.
Lily - dreadful the way they forget isn’t it. I know they all have a lot going on but it’s only our intervention that seems to keep things on track. Can’t even imagine what was going through your head at the morning stabbing, hope the bruises aren’t too bad and the memory fades enough to make next week bearable. Moan as much as you like, you know we all understand. Guess it may have freaked your daughter out at the one time she came to see what happens! Take cae and rest up, hope effects aren’t too bad.
Kirsty - great for finishing chemo even if it was ‘early’, there is a point where the good outweighs the bad and I’m glad your onc has decided not to put you through any more cycles. Sounds like you need a break. Maybe you’ll be over it all for your 40th (if I remember right)? Look after yourself post-chemo as you’ll still be susceptible to infections etc for at least 3 weeks, probably a bit more if your counts were low. I just threw caution to the wind after 3 weeks even tho’ I expect my neuts were below most of yours still going through chemo!
Angie - hope it’s nothing with the genetics but at least you’ll find out one way or the other and make whatever decisions are needed. I’m about to embark on that ‘adventure’ but need to wait for my Mum and Dad to get back from (another!) holiday to get the family lowdown - even though I know most of it I need to get dates right. I’m doing this for my daughters and actually a bit for me as I’ve read recently about treatments that are effective for BRCA BC as opposed to non-BRCA BC, so may be useful to keep up my sleeve for later. Hope rads go OK and you don’t suffer. Would love to know more about your case study etc so when it’s done you’ll have to let me (and anyone else) know by PM or email. By the way the wedding sounds fab, esp the dress. Let us know when the hen party is!
Lisa - woo hoo - rads over with. Well done. At least you must be due some sort of a break before any ops? If so enjoy the moment of not going to hospital all the time. You sound on really good form so I hope you are and continue to be so. Let us know what’s going on with ops etc and more importantly life in general.
Lorraine - good to hear from you. I think the weight gain on Tamoxifen can be down to it making you feel more hungry (I’m sure I read that years ago) so maybe you can get some low fat alternatives in? I’m trying my best as I think all hormone treatment affects us in the same way and need to keep things in check weight wise. I’m seeing how I get on with Femara as one of it’s side effects is palpitations and I’ve read a thread on here about them - so not quite as ‘less common’ as the leaflet tells you. I’ve had a few incidences to date (only been on it 2 weeks!) but I used to get them occasionally before I started Femara, so keeping a note and will report back to onc. I didn’t have any significant side effects from Tam (except high BP!) so hopefully you won’t suffer either. I also read that sometimes the brand you get given can make a difference so it’s worth noting what you’re given by the chemist each time if there’s a change in how you feel. Will keep you up to date. You are right tho’ - it’s nice not to be going through chemo any more - So Sorry everyone still on it, but you are all coming to the end of the poisoning.
Joanne, Bev and Julia - hope you are doing well or getting better at least.
Just a quickie about nails and hair. Hair is slowly returning. Worryingly I have a very receding hair line at the moment and hope it comes back in line with the rest pretty damn quick! This will not look good when it’s going commando time! A little bit like John Malkovich I think. Very fluffy on top (and all over) so not going out uncovered any time soon! Nails have lovely ridges on them, as someone mentioned on here (somewhere) a bit like lines in a tree trunk - you can see when chemo started! Also a lovely curve to them so when they get long they’re quite a nice hooked shape! Anyone else’s doing the same? At least I’ll be OK for Halloween!
The other ‘funny’ is a ‘moostache’ story! I’m not being (too) cruel about her as I’ve suffered with ‘upper lip hair’ since my teens but the other day I was at a plant nursery and had to arrange delivery. Well, the lady who I had to talk to had the most luxurious moostache I’ve seen in a long time and it was a bit like Austin Powers in Gold Member when he wasn’t meant to look at or mention the guy’s mole. Very difficult not to stare! Hasn’t she heard of waxing? And it wasn’t as if she was a little old lady either who might not have realised. Hmm very odd.
Well, off to work for me (mornings only thank goodness).
To all at the bottom of the black hole I hope you climb out soon and all those at the top enjoy the moment.
Nicky xx

Hi: Just a quickie - Lily you had a horrible time yesterday hope you are feeling better today. I had rough time too - took four tries to find vein that would work. Came out covered in plasters and bruises! Felt rotten yesterday but am OK today. Will read thru all this wonderful stuff tomorrow at office - it is quicker than dial up at home. Take care of your self Lily and will come back to you all tomorrow. Just finished ironing, off the Sainsburys - oh the glamorous life we all lead!!!

LOL

Julia

Lily. Hope you’re feeling a lot better today, I was really quite angry about you having to wait around soooo long it’s not on and to then forget the piriton, I’m not surprised it made you nervous, it would anyone.

Thanks for looking up the brca details for me. I did already know what BRCA means, in reality for me it just means regular scanning of ovaries or having them removed, I jsut don’t fancy anymore surgery even if it is just keyhole but it’s manageable. You never know maybe they did finish scanning and find nothing in 3 months, not likely though.

Where were you getting this info from out of interest?

Anyway enough about me how are you feeling today. Is it still making you bouncy or are you finding that the general tiredness is beating back the steroids now. I was much less bouncy for the last 2 rounds.

My hair is hardly growing at all speed wise it seems, I think maybe my body is prioritising things and that’s just not at the top at all, still I do have some very short eyebrows and ayalashes now.

Nicky. I may have to pick your brains re brca related treatments if that’s how it turns out, but you know me always interested anyway :slight_smile:
I’ve got stripy nails too BTW.

Hope everyone’s doing well today, or at least better than you expect, especially thos of you who were poisoned yesterday.

Right back to work for me and to find an alternative way into Carlisle as my normal route has road works grr.

Good luck angie!! God lots of news to catch up on. I would like to know more about BRAC gene as so much in family history told me its quite likely they will find it in me, not sure waht this means in terms of reoccurrence as heard someone say it increases the risk of it coming back etc. might have to do some research myself but trying not to look around to much as end up reading things I probably shouldn’t!!!

Will pop on later, shattered and at work. My friends dad who I got to know fiarly well had a form of cancer and started treatment few months before me, went down hill rapid as chemo hadnt worked and died suddenly last night so dont know what to say to her and its really scared me even though different circumstances.

Catch up later, hope everyone having a brighter day today
xx

Hey Lisa… Sorry to hear about your friends dad (why do we all find ourselves typing sorry so much nowadays :frowning:

try not to relate it to yourself, cancers such a wide ranging thing that in some cases there’s barely anything on common other than cells gone mad. Just be honest with your friend, I’m sure no one knows what to say so she might be feeling isolated, and even if there are loads of people around who knows if they’re listening so just let her know you’re there if she want’s to talk. Big Hugs to you though, I know it’s scary when its so close to home :frowning:

xXx

Hi,
just a post to let you know I woke up fine. I just needed to sleep it all of. I had insomnia at about 1am but managed to convince myself to sleep after an hour with a jigsaw. No bruises yet just red dots. I feel like putting a ring round the one that worked for next week.LOL. I can see that one of the attempts is actually where my port ends so went right into my body instead, even I could aim better with a mirror. I have a feeling that my port is starting to fail, maybe due to failed attempts by people. It always use to bleed back instantly but has not the last 2 times so they had to flush in and then suck it out. This time it wouldn’t start and then it wouldn’t stop. Will read up to make sure you can’t bleed to death if it won’t stop in case it does it again and I go into panic mode. They blamed me of course, said I could have caused a surge of blood by standing up!! They told me to go!! Julia sorry to hear you had problems too and I think the arm veins are more painful than the port. Hope you are well this time. Chris good luck today and with the next dose and after effects. My daughter was ok but said she was exhausted and would never think ‘I would rather be at work’ again! She kept telling me how brave I was so I think it went quite deep watching it all. I think I confused you I had the chemo Tuesday so now on recovery. Take care . Nicky, thanks you know how it is at the time you just get on with it and the tiredness and annoyance comes in later. At least I feel good today and that is a lot to be glad for. My nails are orange with stripes down but no ridges. The research nurse said it is the epi but mine definitely started with CMF so I disagree. Ridges are from epi but none in sight yet. Sorry about the ant and dec receeeding hair. I am sure it will come. If it reassures you, my fringe is the only part not regrowing such just the remnants still there. The top of my head is a ball of fluff and 1000 totem poles when I dry it. A little is coming out on CMF so anxiously keeping an eye on it. Liked the moustache story, I think mine might be curly!!! LOL - not. Lisa so sorry to hear that, it shakes me every time. I talked a lot to my research nurse about this and she said these all would have been there on dx and found too late or not scanned so unaware. Some people just try to work through pain and don’t think to see the doc until unbearable. Such a shame. Just give her a hug, perhaps send a sympathy card and say sorry. I think you just want people to recognise that something has happened and that they are being thought of. Thanks Angie too. I read quite a bit in the Dr Susan Love breast book, she is the big Bc guru in the USA who is a straight talker. I have all the figures for whatever they say so if you want to know anything later shout. I hope you won’t need to. They look at whether you have an affected Mother, sister or Daughter to assess risk so your Mum might be interested in how it now affects her. Sorry to say that but hopefully she is fine. I assume the Police bit means we aren’t talking chemo drugs, please be careful I find them really scarey and a bit unpredictable in our current state. Would hate anything else to go wrong. Hope this comes across as I mean it too - just love and concern x,
off for some more ironing,grrrrrrrrr, hi to everyone else.
Lily x

Hi Everyone

Lily - you poor thing getting pricked and poked yesterday and to be in the hospital for over 5 yours. Glad you are feeling better today. I would also be putting a circle or a target round the one that worked.

Nicky - Thanks for the advise i will be taken it easy after having a rough time. I want to make sure my body is feeling up to having a party. For my 40th i will most proberly have a quiet meal out with the family. My friend wants to cook me a meal at the weekend, as she is away for my birthday, so looking forward to that.

Lisa - sorry to hear about your friends dad. Like Angie said it is hard on us when it is so close to home and every cancer is different. BIG HUG :slight_smile:

I was back at the hospital today having abcesses looked at. They have really got sore now, so a few swabs have been taken. Just hoping they go down soon. I also went for a nicer kind of treatment. Had my first session of reflexology today, which was really lovely and soooooooo relaxing. I recommend big time :slight_smile: I am now off to look at some xmas cards on the breast cancer care web site shop…can’t believe i am thinking of xmas!!!

Take care everyone

Kirsty xxx

Lisa… I appear to be twinning with you re car trouble… Never made it to rads today, bl**dy clutch broke about 40 mins walk from the hospital and couldn’t leave the car in the middle of the road so went to turn on the mobile and it was dead too so I had to walk to a phone box while Tommy stayed with the car, there are very few phone boxes left, even in a city. so took 40 mins to find one, call the breakdown people and return to car. Just got home, have blocked the local mechanics drive with her so she’s going to have to get sorted first :wink:

It looks like it’s just a bolt that’s gone. But talk about timing so day 1 of rads… patient missing :frowning:

This has been one bad day :frowning:

Hi,
Angie what a nightmare and on your way for treatment too. I hope it is just a bolt so you don’t get a nasty bill. I once had a Yugo and the whole clutch pedal just fell off and everyone just laughed of course. I get really upset when cars go wrong for some reason and was not amused. We had taken a warranty out and they said having no clutch pedal did not constitute a breakdown!! So had to pay for breakdown and a repair. My current car is going in for 2 days and it is all free thank goodness as my ‘anything that goes wrong in the first year’ was about to run out in 2 weeks. Phewww. They need 2 new seat frames and an air bag, so would have been a wopper of a bill. Kirsty good luck with the abscesses, they are really painful as full of pus and keep expanding. Normally they either burst or have to be drained to get rid of them. Mine were huge and burst as I sat waiting in A& E for an op, but they still took me in. Lots of luck and hope they are not stabbing too much. You need lots of protein to heal and repair.
I am currently sporting a lovely dex induced suntan. I have been told I can reduce my drugs as I want, so have gone to 3 a day and did not feel so manic. I have only taken 2 anti sickness tablets in total and don’t intend to take any more. The vit B supplements I have increased to 9 in total, one every 6 hours. So that is my new regime for this double dose. I have spent the day trying to claim incapacity benefit as my 28 weeks of statutory sick pay have finished. Apparently it is an automatic payment but there are lots of extras if you fit various criteria, we don’t even get working tax credit so no chance of extras. I have not found out how much it is but not holding my breath! I have to get a certificate from the doctor and prove I went into hospital. Might send a photo of the 4 scars.LOL. Does anyone else get it? I have also contacted my union benevolent fund and wait to see if they will help. You can’t afford not to be in a union as a teacher as any kid can just make false claims and the teacher gets kicked out first. Then they look at the case. I know there is Macmillan too. Anyone got any other ideas of places to claim while ill? Might a swell give it a try I suppose.
Well hope you are ok. I still don’t know what to do about genetic testing. My onc is very anti it but I have 3 daughters and know that catching it early is so important, but then so is enjoying life and not having that hanging over you from an early age. Did you read they were going to introduce testing in chemists for £10 so might wait and do it anonomously first. i will be very interested to know how you all get on. I really don’t know where to go with this one
Love
Lily x

Hi Lily

Here’s a link to Macmillan cancer support, the webpage you will be directed to contains information and advice about financial help and benefits available, they also have a helpline you may wish to call for more advice and you can access the number via this link too:

macmillan.org.uk/Get_Support/Financial_help/Financial_help.aspx

I hope you find this helpful.

Kind regards

Sam (BCC Facilitator)

Heya Lily, A friend told me that macmillan can be a great help in times of trouble so do talk to them.

I’m feeling really unlucky and a little isolated today. The wonderful Raymond our local mechanic’s going to try to fix the car this afternoon, eg part comes in at lunch time, he’ll fix it ASAP and then I can go to rads tomorrow but tomorrow it’s due for it’s MOT too and if it fails I’m back to square one and none of my friends are around to ask for a lift so I have no idea how I’ll get to carlisle if she fails tomorrow.

There is hospital transport but apparently it has to be arranged 3 days in advance… I’m sorry I didn’t realise I had to plan my emergencies…

please pass your MOT binky… PURRRLEEEEASE.

how important are rads anyway :wink:

How are you feeling today Lily, still bouncing?

Hi Angie,
why not phone the hospital and arrange it anyway just in case, I am sure they would understand a breakdown. I think the worst thing about hospital transport is that in this area it is a bus that goes round collecting everyone and no-one can go home till you are all done. Hope ‘binky’ stands by you.
I am good, not bouncy really having droppped one steroid per day and I could hardly wake up this morning.Had to force myself to sit up or he would never have got to school. I will have to think whether I prefer sleepy or feeling like I am at the most exciting party ever. Tricky choice!
Thanks Sam for the link, will check it out.
Have a good day if you can everyone. My Mum’s birthday so taking her out to lunch later.Wrapping her pressies has made my eyes whirl, bad paper patterns.Wooow. Glad I took my car in early before this started, I have borrowed a courtesy car until they sort my air bag and seats out. better exercise caution so don’t have to pay the £300 excess for bumps!!
Lily x

Heya…

All solved. Now starting rads on Monday instead, still have 3 month check up tomorrow though so raymond can hopefully still fix her today but at least the rads aren’t totally screwed up. If there are any problems MOT wise by friends are back on Sunday and we have looked after their dog for the last 2 weeks so I’m sure I could harass them for a couple of days if need be. But fingers crossed she’ll just pass.

hi ladies, hope you dont mind me joining .

Lilly just finished the epi cmf and I think you will be finishing shortly but with the steroids I only took them before chemo and found that a lot easier to cope with the follwoing day. I dont know how the cmf is effecting you but after the third round I have been really cold and getting a lot of aches in legs. Onc says both are normal but just so you are aware.

Take care all
Lyndax

Hi: I am now going to try to catch up with all the news for about the last two weeks – this will be an epic assay! Here goes:

Angie: read your stuff about arnica and tissue salts – I used to have homeopathic doctor at the practice I use in Rugby but she is only available privately now. Do you think it would be a good idea to give her a bell as I am getting near to the end of the poison and need some boosting. I also had no help from my BCN’s about nutrition or helping you rebuild yourself – was just told to eat healthily and not overdo things! Dead helpful – not!

Got to the bit about the really helpful village person – one of the reasons I have hardly told anybody in our village – just couldn’t do with the comments – good or bad. But now am getting to the end of the chemo I don’t care so much.

Re the bit about pains – I have pain in left ribs just other side of boob, not surgery side. I think it is because I have been a lazy b***ger spending too much time lying on the couch reading propped up on left side. Have sprayed it with Ibuleve and it helps – will have to slump on right side in future! BCN said if it continued, they may do x-ray.

Love the wedding plans – don’t forget the red Doc Martins under the gorgeous dress!

Lily: re Soya – all I got was “the jury is still out”. Have now got to the bit about your nails – mine are ok. They had a growing spurt over the last six weeks – thought that was a good side effect – no hair but great nails. Now the hair is coming back – in all the wrong places – nails have flaked away, but they do this regularly. Haven’t got any funny colours or ridges – yet!

Lily just got to your report from Tuesday – sounds like absolute hell! Makes my problems with trying four times to find a vein very small in comparison. At least my girls were gentle with me – just have find another three now before the end. How can people be so bloody useless? It’s bad enough going thru all this s*** without as****es making life even worse. Let’s hope they get it right next week – perhaps you could ask them to make sure its all in order before they start. Glad you are feeling better today. Let’s keep going – the end is in sight!!

Nicky: Your research on the hormone stuff is really good – I have meeting with onc on Monday next when I will want answers to why he talks about tamoxifen – which I though was for pre-menopausal women – when I am post menopausal by about 7 years. Had one, don’t want another one thank you! Any clues?

Kirsty – you have been having a horrible time, hope things are getting better – from what you have been saying they can ONLY get better! Interesting about the tam raising BP, already have high BP so don’t need anything making it worse. Yes I have all over black fluff and it seems to be receding from the temples – maybe it will grow in later – I hope.

Lisa – glad your rads are over, each stage we go thru we just have to think about the next bit.

Right, have got to the end of all the posts I missed over the last two weeks. As always, some of us are having a rough time and some have finished and some getting better.

I always say to people that the information and support on this website is phenomenal – I point everyone with this bloody disease in this direction. Angie, your info is always fantastic and makes me feel very dim – but I am learning.

Will now do a review of the lovely B&B is Grasmere but won’t be as rude as Michael Winner.

Grasmere B&B: Called Stonegarth luxury B&B (website name). Just lovely – large house in middle of Grasmere only has three double rooms – one a twin. Rooms are about 16ft square with 6ft bed and either sofa or large armchairs and table, beautiful Italian bathrooms. All floors are solid oak with underfloor heating and superb rugs. Very large sitting room with black and cream sofas with masses of cushions, nice dining room, fabulous kitchen with black marble surfaces and floors, conservatory with swimming pool where you swim against the jets. Very nice gardens but wasn’t quite the weather for sitting outside.

Attilio and Sharon are lovely people. She does really nice food – Cordon Bleu trained – and you never felt overfull. The wine was superb and very reasonably price – decent white Burgundy (Macon Lugny) at £13.50, fantastic Beaune for £26 – you would pay at least £60 for that in restaurant. Also have honesty bar in sitting room in case you fancy a scotch with your tea!

We paid £66 per person per night DB&B – we thought it very good value.

Shame - some of the girls were interested but I guess I can give them the website address? Is this OK?

Forget last post - didn’t read your comment properly - Yes I do understand.

Hi girls

Hope you are all on the road to recovery and forgetting (or trying to forget) the bad things that have happened this week one way or another.

Julia - I think the standard treatment for hormone therapy is still Tamoxifen whether you are post or pre menopausal as it works for both cases. For me it seemed to have stopped working hence the secondaries and why I’m now on AI’s (aromatase inhibitors - not sure if I’ve spelt this right). However you do need to be post-menopausal for them to work. I think that these are now being prescribed after your 5 or 3 years of Tamoxifen, if post menopausal, so it may be worth asking if this will be the case, however that’s a long way off so you shouldn’t panic about it as who knows what will be happening in 5 years? This has certainly been a change in follow up treatments since my 1st dx in 2003. Loved your review of the B & B, even with the editted bit, I’m sure we can find it on a search engine, if not I may PM you.
Angie - hope all goes well when rads resume on Monday. It’s so frustrating when our cars let us down, we’re so reliant on them, unfortunately. If only we all had a better public transport system we wouldn’t get stuck in this way. Hope you are getting stronger all the time, I’m certainly feeling much better now, however fairly exhausted this week as I’ve been dashing around trying to get b’day presents for OH, not very successfully either. I’ve run out of time now as it’s tomorrow so I’m taking him out for the day on Saturday and let him choose some things he wants and go for a nice lunch… Even though it’s his b’day I’m insisting we go and see the new Cohen Bros film this w/end - well it has got Brad Pitt in it for me and Tilda Swinton for him :wink:
Lisa - so sorry to hear about your friend’s dad, I’m sure she’s appreciate a card or visit. When one of my close friends Mum died last year from kidney cancer she really did appreciate the kind thoughts.
Lily - glad you seem to have recovered from the stabbing ordeal - not sure your daughter will have done though :wink: Maybe you can mark the holes as you said and number them 1 - 4 or whatever and say try this one 1st, then this, then this… Let’s hope it’s only one try and the port holds up. Must be a bit scary when you rely on this and also when it doesn’t seem to do the job all that well at the moment. How they can say it’s because you got up I don’t know. We only do what we’re told after all. Have a good weekend and hope all the side effects aren’t too bad.
Kirsty, Bev, Lorraine and anyone I’ve forgotten I hope you are a`ll doing well and either getting closer to the end of chemo or enjoying it now that it’s over.

Take care buddies

Nicky xx

carrieann

Stonegarth sounds lovely I shall check it out for sure and recommend to friends and family.

Re building yourself back up, I’d give her a ring if you liked her, I know it’s helping me and the last 24 hours has tested my sense of humour to the limit too so glad to have a little in the way of reserves again.