chemo kicks off 20 May - any good buddies?

[nicky08]

Hi all

According to the count on the front page, when you’re not signed in, this will be post No 1000! Woo Hoo - who’d have thought we’d have so much to say to each other over the past few months but it’s been so good to get support when we need it. I didn’t intend being No 1000 but as I’d not added anything for a few days I thought I’d better catch up.
Joanne - do tell us, when you’ve got time, what’s been going on. Hope it’s nothing nasty but I’ve a feeling it may be. If it is then I hope you’re picking up and feeling stronger.
Lily - great about the race. Bet they couldn’t believe the weather. We watched my youngest playing hockey on Sat afternoon and she was very unimpressed with the sun as she’s the goalie and has to wear all the kit. OH and I enjoyed it though, lovely and warm! Can’t believe you watch Hollyoaks! I’m always telling my 2 daughters to turn it off but they’re really into it. Good luck for tomorrow - expect you had bloods done today? Hope this was OK and the counts are good. My hand is still not recovered! Wedding ring was cut off some time ago so I’m a loose woman now! No comments please anyone! Having had it checked out by the right person, rather than GP, I’m not too bothered by it and I expect time will be the great healer!
Lisa - Wow - 2 more rads to go and that’s that bit done and dusted. Luckily you seem to have got away with not too much burning but take care after and keep moisturising until it’s all recovered. Let us know about your op and when you get the dates so we can support you as it’s another hurdle for you to cope with. Good idea about the virtual hen party! Hope there’s a theme to it and we can dress up!
Lorraine - hope you’re doing OK, assume so as a very short post! Take care and enjoy the lack of hospital visits.
Angie - regarding the hormone therapy stuff I think it will depend on whether you are hormone sensitive at all as to what you can take. I found on Tam that I didn’t get any hot flushes that caused me any problems. The only thing was water retention that pushed my BP up, along with the fact that hormone therapy can change your BP anyway. I took, and still take, starflower oil each day which should help and I may start glucosamine (sp?) if I get too achey on my Zoladex and AI. I can’t take anything that mimics our own oestrogen so Red Clover, Black Cohosh, Agnus Castus etc are out for me but if you’re not hormone +ve then these are worth a try. I don’t know of any food in particular that will relieve any menopausal symptoms and I haven’t so far used homeopathy but I may look into that if things get bad (which I expect them to!) Will let you know where my research takes me!
Take care everyone else on here, hope you all had a good weekend and this week treats you kindly.

Nicky xx

[system]

Great to see you back Joanne, wow on the eyesight. my OH will be jealous of that particular side effect. explains a bit. I wonder how that happens, maybe new cells growing or something.

Wedding is sort of planned for Feb, we need to sort out our driving licences so that we can go and give notice of our intention etc. Still waiting for my dress to turn up, apparently the lady who’s selling it spotted a bit of lipstick on it so has sent it to her expert dry cleaners to sort out before posting over to me. I suppose things like that will happen if you buy clothes from ebay which were used in a movie in hollywood. It’s made of silk too so needs to be treated carefully. I wonder which actress wore it… probably an extra, Tommy reckons it would have been for a movie like LA confidential which was very 30s styling.

Lily. Just think after the next 2 week you’ll only have 1 double dose to go. I know it’s taking what must seem like an age and here I am 4 weeks on and still getting twinges and aches but I’m starting to look a lot more normal, the steroid face is going now and the energy levels are picking up nicely now too. Still need my afternoon nap to be of any use in the evening though.

I’ve got a few good friends in the village who came to get me on Sat and take me down the pub which was great, although I found out that a specific person n the village has been saying things behind my back, just stupid stuff like she thought me wearing head scarfs was “making a statement”. She’d rather I wore wigs and prosthetics etc so that the focus of attention remains clearly on her. Interestingly she is very proud of her cleavage and likes to display it so I think she really would rather I stay hidden (as I represent her wost fear I think) … tough. She’s actually moving out later this week so I’m just going to avoid her until she’s gone…

How stupid do you have to be to say things like that to a persons friends eh

Lily congrats to your son on the race. I might do it next year. possibly. I need to get a waistline back somehow

Lisa: Who are you dealing with to arrange to op, you could give them a ring and explain that you’ve spent all bloody year waiting for things and just once it would be nice to know what’s happening when. I’m sure they’d understand. So last rads for you tomorrow… WOOOOO HOOO, it’ll be a few weeks before the side effects pass from what I’ve read… sorry

Don’t worry too much about the aches and pains. Obusco told me that if they’re constant, don’t move and don’t respond to pain killers and still there after a couple of weeks to get them checked out. I’ve noticed that almost all of mine like to move around and none of them are constant.

Right to work for me, wasted the morning already.

Lots of love Ladies, were all getting there, just hope there is where we all want to be LOL.

Angie

[system]

Nicky: They will be treating me as if I’m hormone positive as I was becoming so, seems like the tumour was er+ pr+ at it’s core (well one of them was anyway). Great to hear from you, hope you’re enjoying life post chemo.

Bev… we’ll go get the ropes, hope you’re back up soon. It’s not long now until the last dose is it?

[system]

The wedding theme is russian cold war look (It will be feb) so we’re going for big wool coats, muffs and furry hats instead. This girl isn’t getting cold for sure

[system]

Hi Everyone

It has been a while since i have been on the forum so i thought i better play catch up. Had my second session of tax 3 weeks ago and the side effects got worse. Did have the injections everyday which helped keep the white blood cells up. I couldn’t face injecting myself so the nurse came out to do it… what a chicken hey!!! This time round i picked up another infection and presented it self with two big lumps under the armpit, got them checked out and was put on anti-biotics, which in the end has not worked. I have also lost 2 stone in weight in 2 weeks, everything i ate came straight back!!!

Went back to hospital last Thursday for a review and the Onc has decided that they have stopped chemotherapy, due to all the complications. One being the infection on my armpit, they don’t think it will clear if they keep given me chemo and are worried about the weight loss. I have had 6 of the 8 sessions, so it is safe to stop. I am over the moon and in a strange way feel wierd that it is all over. Will be starting Radiotherapy in about 3 weeks.

Hope you are all well and had a good weekend. ((((((((BIG HUGS))))))) to everyone

Promise to keep in touch alot more often!!!

Kirsty xxx

[system]

Kirsty… god you poor thing, still if it helps a lot of us are only given 6 doses and that’s the full course so maybe the last 2 are just for fun… not yours theirs

So congrats on being finished, hope the recovery goes OK. Have they given you anything to help you beef yourself back up a bit, maxijoule or anything like that. You must be so short on energy after all that on top of the chemo. I gained weight and I’m still wiped.

Huge hugs to you.

Angie

[Lily200]

Hi,
I lost a big post earlier and gave up sorry. I am back after a very yummy lunch with 4 lovely ladies who are on this forum. It really set me up for tomorrow - oh no not again! Julia thinking of you tomorrow too and Joanne for next week. Also poor Bev who is down the hole, wave to me as I go past tomorrow!! You have been so poorly I hope this one goes better for you. Start eating those high energy and high iron foods to boost you up, when you can face them. Thinking of you x.
Lisa thanks for your messages, I am getting right cheesed off at times! Hope all those aches and pains go soon and how is your skin. Does it hurt a lot when at its worst? Is the next op to have your ovaries out? How far is Newcastle from your home, will your parents be able to visit you there? Do you know how many days they will keep you in? Keep us posted on that. Joanne i bet better eyes is the only side effect I don’t get! LOL. Are you ok I was a bit worried from your post . Hope things are settled so you can enjoy this good week. Nicky, who better than our own tv star to get number 1000. Well done.Shame there is no prize! I agree it is an amazing rollercoaster ride we have all shared and I hope we will stay in touch for better reasons than just BC. Did your daughter’s team win? It was really nice weather, I thought I might burn my head!! I love Hollyoaks, a great story line going on right now, I often watch it twice on sky, helps the old chemo brain. LOL. There can’t be another prog with so many good looking people on it. Blood test went ok this morning but insisted on jumoing the queue when I saw over 40 people waiting. I got Frankenstein’s son, who is good but not as gentle and always gets a tiny skin tag I have from all the needles and it bleeds every time. Will be very strange to go without my husband tomorrow. I feel safer with him as he is big enough to carry me home if necessary. Hope my daughter doesn’t get scared by it all as I will be out for the count once the piriton hits the spot. My ring is tight too but it comes and goes with the treatment. The foot guy has no idea what is wrong with my feet , doesn’t know who else to send me to and says I have too much going on right now, so putting me on hold! he thinks I might have lymphodeama of the left foot!! Not very helpful really but a very nice man. Let me know how you get on with your hand and fingers. Angie a hollywood dress, wow, that is so you!! What does it look like? I have no idea about the cold war bit, does that mean Tommy will be in uniform. I keep thinking Dr Zhivago but Oh said that is much too early. I could go with cossaks - yum!! We must plan the cyber hen party or all rush up and do a topless salute as you walk through.LOL . I though that woman’s comments were just bitchy and unnecessary, glad she has been evicted. Glad to hear you are getting back to normal, helps me to stay hopeful that pale pudding face will go. I plan to have copper hair in my next good week but won’t dye it while the drugs are still whizzing round. I have an organic dye from Sainsburys. My hair is like fluff and very uncooperative right now. Kirsty I am so pleased that you are off chemo. You seem to have had the worst luck with the drugs so hope it turns around for you now. You must convalesce and start eating little and often with lots of protein. Your body must have a lot of repairs to do. Have the lumps started to go down yet, they must have really panicked you. Take care before you start rads and well done for hanging in there - superwoman!
Will finish here and jump in the tub so I sleep well or will be thinking about tomorrow. Bevy I am sending you cyber hugs, neuts, Hb, white blood cells and lots of yummy things to eat. hang in there.
hugs to all of you
Lily x x

[system]

Thanks girls,

I found the rope Angie and have started to crawl out. The wedding dress sounds amazing and you ignore that stupid woman my daughter said she would visit her! she was outraged that someone could be so cruel.

I just felt so hammered this time and my arm really plays up each time which causes difficulty dressing and eating etc as I can’t put any pressure on it at all. but I keep on doing the exercises and hopefully it will get better over time. Also each time my digestive system is really unhappy and I get such griping pains Thanks Lily for the hug it came at the right time was feeling very anti everything and got fed up with hearing about people leading their normal lives I know that is silly and childish but it is how I felt. And then I come and here and see how brave all you girlies are and feel ashamed of myself for being so pathetic.

Joanne, amazing if that happens re the eyesight I will be so thrilled as mine have really got bad during the chemo so I am keeping my fingers crossed on that one. Good to hear some positive news. Sorry to hear you have had such a horrible time.

Kirsty good luck with the rads I start mine on the 17th Nov.

Thinking of you all and wishing everyone a peaceful week.

love Bev

[system]

Hi Girls

Thanks for your supporting comments. Even though my chemo as finished i will staying on this forum to keep in touch with everyone. You have all been so supportive and gives me a boost. It is great to talk to people who is going though the same cr@p and who understand.

Angie - I havent been giving anything to boost me up. Have been drinking alot of fruit juice(innocent smoothies) for energy and nutirents. I have lost 2 stone, but in a wierd way it is good, because i put on 2 stone when i first started on Chemo.

Lily - i am so glad that they have made the decision to stop the Chemo. The light at the end of the tunnel is now starting to get bigger!!! I still have got the lumps and at first it was worrying. They are abcesses and are now geting really sore. I am back at the hospital on Wednesday for more blood tests, so i will be asking to have the lumps checked again and hopefully they can do something with them.

Bev - I haven’t got my date yet for rads, hopefully in the next week or so will find out. Good luck with you on your rads.

take care everyone

Kirsty xxxx

[system]

Lily and Joanne. Hope it’s not hitting you too bad today, honest the steroids do let go eventually I promise.

Bev, keep climbing there’s light up there. Hope you’re starting to feel better.

Kirsty: it’s been 4 weeks since my last dose now and it’s a bit more like real life again now but give yourself time and don’t beat yourself up while recovering (says the least patient patient on the planet).

my work mates are all partying tonight in London as its 5 years since mysociety started doing the good work that they (I should say we but feel a fraud work wise while going through chemo), Naturally cinderella aint going to that ball because rads start tomorrow and I still look a bit like a pumpkin LOL.

Ho hum the things we did and the things we didn’t get to do this year eh ladies. Anyone else for a T-Shirt that says “maybe next year”

[system]

Hi Angie

I will order a T-Shirt please!! I am always saying maybe next year… it is my 40th birthday in a couple of weeks, but have decided to celebrate next year. Not in the party mood at the moment. I know what you mean about looking like a pumpkin… i might just paint myself orange for halloween, for when the kids come to the door LOL

Good luck with the rads tomorrow

Kirsty xx

[system]

D***, Bug**** and blast.

Just had an email from the genetics people who have arranged an appt for me next wed. Basically when I met with them before they said that if they didn’t find anything they’d not bother arranging another meeting so I guess this is not good news… sob

So now I know that there’s a discussion to be had, but I can’t do the appt because I’ll be in the middle of rads. Arrrgh.

[system]

hi everyone

lily 2000
well lily you have an amazing fighting spirit,
you seem to be having so much treatment, my cancer is aggresive but im lucky as i got away with the six chemo’s. theyre saving anymore in case i need it later. maybe youll be better having it in one go.( how much more is planned?)
it must have been so emotional seeing your son doing the run. the only run my son would ;do at present, is run away if something needs doing. im now on tamoxifen and seem to be doing alright, just weight gain thats bothering me still. (not bothering me enough, to cut out the cream cakes though) we had a lovely day out on Sunday took grandchildren to a jersey ice cream farm, of course couldnt resist a rasberry meringue cone,
there were 10 little piglets in the field, my grandsons loved stroking them. hope next rreatment doesnt knock you about too much, take care, i will be thinking of you.

Nicky 08

you may be pleasantly suprised by your medication, and have no side effects, i was expecting to feel worse than i do on tamoxifen, its just my mood levels and weight gain which are the problem. my moods could have something to do with hubby acting like victor mildew at the moment though. cant blame him for my weight gain though! all my own doing. it feels great once youve finished the chemo doesnt it. ( i dont mean to offend anybody still going through the torture, but there is a light at the end of the tunnel.)

Vertangie

i really hope the news isnt too bad, but im sure you will find the strength you need at the time, and with the help of everyone on here, it will be managable. one day at a time. take care x

bye all you couragious girls, you deserve medals, x

[lisaf]

Angie so sorry re genetics, but hey at least you will know one way or another, Im still waiting but fairly sure I have the gene to be honest and at least if its found the other members of my family can be tested but then do Ihave another masectomy. I was told they would get in touch withme either way. Hope you are okay keep strong and focus on tomorrow.

love lisa you cumbrian fried friend
xxx

[Lily200]

Hi,
well after all those lovely message I feel a bit bad for moaning about my day. But i know you so well, I know you won’t mind me letting the steam out of my ears on here so I can battle on. I had a rubbish day with chemo today and feel very disappointed that so many things can go so wrong this far down the track and frankly co.k ups by staff make me feel very vulnerable. I spent 5 1/2 hours in the unit for under 2 hours treatment and consequently feel very spaced out and floaty, instead of fine as usual. All due to stress i think. Had a lovely chat with my research nurse and saw the doc, who said my bone marrow is very strong so off we go again. They stabbed my port but it wouldn’t bleed back (which means it is not in) , they tried a drip and it wouldn’t drip. Out came the port, sterilised a new set of stuff and in she goes again, no flow back again. So she trotted off and the senior nurse came over and had a 3rd go after really pressing it hard so it ached, same again, she couldn’t get it in. My port is almost bursting through the skin it is so high now. Errrrrrrr. Then they all went off to see their champion vein /port stabber who said I’ ll have a go but said out loud I think the line might be blocked! Panic panic what the heck do they do then! I said I am not having surgery and if you don’t get it in this time I am going home! This was all being watched by a poor lady they hope to talk into having a port. I often have people come to watch if I am the only port carrier in. Anyway 4th go he got it in but it really hurt as he stabbed it hard and all the cream had long worn off from all the scrubbing. They then put up a bag of saline, followed by another bag, followed by guess what another bag as I have now got out of sync and hit lunchtime. I am also busting for the loo and can’t face drinking more to help my mouth. 3 hours after I arrived she came to start the chemo. In goes something, in goes something else as she is not talking about what she is doing. So I casually say was that the piriton? What piriton? Then my whole treatment has to be stopped because my drug chart has not been written up correctly and they obviously have to follow some protocol in these cases. So another meeting in the cupboard and everything has to be suspended until my research nurse is called, the onc is contacted and they get the dose from the pharmacy. Someone forgot to write the piriton on and of course it can be dodgy without it for me. At this point my eldest daughter(first time of taking Mum and a bit emotional) gets a call from youngest daughter’s boss to say she has cut herself badly and nearly fainted and wondered if we were finished and could collect her. … (rude words) . So she went off to collect her sister and bring her to A&E while I went it alone. She came to wave through the unit window so I dragged my tall skinny friend, the drip, over and looked at the wound, which was deep but closed as done with a very sharp object. The wait was so long on the A & E board she went and the GP has put butterflies on and bandaged her for 7 days with a finger sticking out like ET, which made her laugh at least and she is fine now. The nurse came back and hooray chemo started and then I went back on to the drip as I have to have the Cyclo very slowly. Went off to sleep and found my daughter was back but I had 2 people, one each side talking so loud they kept making me jump and what can you say - nothing. So totally fazed out and feeling half drunk but unable to sleep it off as usual. That meant I had 15 minutes of nose pain as I usually sleep through until it gets sharp enough to wake me up in the last 5 minutes. So in a bad mood about that but growling quietly to myself. The nurse came back did the flushes, rinsed the port and said ok you can go. I went to the loo and thought something feels odd. I looked in the mirror and blood was flowing out of my port (from the large vein it is in! ) down my chest on my clothes. No panic then.LOL! So then I had to go and have it pressed really hard to stop it twice. Yooowie. So tonight I have 4 red holes and will wait to see what the bruise is like and feeling very wobbly about next Tuesday now. He has written notes for the staff and I said you just be here for me next week! Rant over, I feel ok but feeling sorry for myself I guess. Will read up on port failure later.
So Bevy you know I mena it when I say moan all you like, this was number 9 out of 12 for me and I am still moaning. Thinking of you and hope you are a step higher up that ladder. Have you asked for a referral about your arm, I think you should as there is often a wait to see a physio. I am not brave, just obedient to what they say. I had no really bad after effects from surgery as a lumpactomy and sentinel node biopsy so I started at a very different point. You are doing great, just keep chugging on and believing, you hit a steep bit of a climb on our long walk. Thinking of you x. Kirsty glad to see you sound brighter if not feeling it physically just yet. I had 3 absecces and had to have surgery as they are hard to get rid of. Keep us posted and hope yours go on their own. Fingers crossed for you x. Angie I have been told I can drop drugs when I like, so dropping one steroid off each day and now having 9 vit B folinic acid supplements instead of 6, as they really help my mouth. Only taking 2 ondansetrone tablets this time as ok on 3 last cycle. I am sure they are all making the acid tummy worse. Angie I was concerned anbout the meeting too but it could be inconclusive or something less than definite, don’t you think? Anyway I will be so hoping it is not more news to take on board. What can they say you have already had mnxs and that is what they can recommend sometimes. I looked up a bit for you. BRCA1 was found first and shows a higher incidence of BC, often at a younger age , in both breasts as well as ovarian cancer (40%) . BRCA2 is less common and can affect men too.It has a lower risk of ovarian C (20% for women) .There are over 700 mutations in each of the genes.She also wrote that most treatments that reduce estrogen also reduce the estrogen receptor negative tumours of BRCA1. I have lots of stats and info here if you need to know more, but hopefully not. It may make the hormone decision more obvious if they have a mutation. Thinking of you x. Lorraine as you can see I took a few punches today but those good old steroids will soon have me bouncing and today is gone , so best foot forward and 6 days of peace now. My onc believes in hitting hard first go and throwing everything at it, so in for a long haul, I guess we just put our faith in them as they do this every day. No pun intended! 3 more to go. Glad you find Tamoxifen ok and just enjoy those cakes.
Julia hope today was better for you than me, Joanne enjoy this week, Nicky hi too
Lily x x

[Lily200]

Hi LIsa,
sorry brain gone, how are you. Have you got many more rads to go? I have just had a real moan and need to go to bed and get out the other side. It sucks sometimes doesn’t it. I am very concerned that my port is failing.
Take care#Lily x x

[lisaf]

lily fingers crossed you port isnt failing. I feel awful for every winge knowing what you are going and gone through, think I got of lightly. let me know how you get on and rest up, only 3 more to go, bless!!! Sorry dont want to rub it in but rads done today. waiting for op and genetics, thought of another masectomy doesnt sit well but needs must.

Sounds like hospital really messed up on you, think they would be looking after you sooo much by now
xxxxx lot of hugs
xx

[Lily200]

Hi Lisa,
thanks, it wasn’t that bad, just needed to get ot off my chest.Ha ! I am really glad you have got through rads ok and that will give us all hope. You have more surgery than I do so you winge all you like, you know I will. I really hoped you would have a better spell as you have more big things to go through. Now get out and enjoy yourself for a while. Good luck on the genetics too. My onc is not keen on sending me but having 3 daughters I feel I want to help them. Not sure what to do about it.
Thanks and you take care
lily x

[system]

You know as someone who’s had bilateral there;s a lot to be said for it, ie a clean slate. eg you can choose wether you want recon and if not how large you want to be and you can vary too, eg I’m still a 34c when I wear prosthetics and extremely athletics shall we say when not.

I have chose not to do any recon and the more I read the more I’m sure that’s the right choice. I don;t want to put others off but do ask just how many ops you’re likely to need based on averages, you might be surprised

but if I’m brca I’d rather know. It;s just right now I feel like I’m never ginoing to get y life back.

Spoke to mum though and change of homeopathic treatment for rads because it doesn’t actually use radioactive material in a linac machine. but the upshot is she has agreed to help me write up a case study and why we’ve done what we have for the benefit of others. I may be guarded on this forum but that’s because I know too much and I don’t want my carers going to jail for helping me. One day that sentence will make sense but not now and I can’t explain, when I can I will I promise.

It’s so f***ed up. But have no fear that you oncs are still doing the right thing, there’s just more to be learnt that’s all and no I don;t know any miracle cures

[system]

Hi Lily
thank goodness ysterday is over for you. What a nightmare, I cannot believe what you went through. I dont know how you had the wherewithall to get home and post on here, think I would have burried myself under the duvet for 12 hours! (I think you have earned the right to moan for England), Hope you are not too bruised this morning. Unbelievable that they missed the piriton off, someone needs shooting.
Hope your daughters hand isnt too sore, look after that sticky out finger, perhaps put a little flag on the end of it so everyone gives it a wide birth!!

Am off to check bloods this am. 2nd tax tomorrow, u again Lily too, have you got someone going with you?

Vertangie, yes there is always more to be leart about ‘everything’!! I think I know what the score must be. Cancer treatement isnt an exact science either and in many ways I dont know exactly what the chemo really is doing to me long term. Its so difficult to know what to do for the best, In someways I feel like a guinea pig anyway. Good luck with case study.We do what we do not only to prolong our life but to make it as enjoyable as poss too, quality is v important and some of the side effects of all our treatement is hard to overcome, not surprising then that we look to what may help.

EVeryone else, good luck with your day, may your side effects be minor and fizzling out

hugs to all
Chris x