Friends needed please!!!!

I’m thinking about phoning the chemo nurses on monday,to ask if they can give me a definate date for the start of my treatments., as 3 weeks to wait is an awful long time to be worrying…I want to get things(life!) organised and to work out what the state of play will be for our trip to Holland.Will they mind me asking,d o you think??? Also, does anyone on here get free prescriptions…and if so, does this extend to the wigs, or do we still have to pay for them, I get free scripts due to my thyroid condition, so just wondering??

Hi Narnia,
Not sure where u live, but in jolly on Weston -S -mare, we get 100.00 script for a wig - anything over that you would have to pay the difference. I think u can apply for an exemption for free scripts (my mum-in-law had bowel cancer, so she did this) cos of the condition - BUT i did read in Macmillan news that scripts this year would be free for all cancer patients in England (theyre already free in Scotland, again not sure when that will begin (?) I would certainly ask!!! any help you can get to ease your mind over the smaller things help to make the bigger stuff easier to deal with!
Sue, I’m glad i made you laugh with the hair!! wish u could see it - kept trying to kid myself it was ok (yeah right!!!) but to put a toner all over would have turned me into Billy idol himself so i was told!
Funny how people respond when they see you - never sure wether they should say it looks good or not - bit like when you see a friend who knows you’ve had a mastectomy, and you can just feel them looking at you to see if your wonk! I saw an old friend a few weeks ago, she looked straight away, so i said hey not bad for a falsey hey?? she was soooo embaressed!! (Had my evil head on that day!)
My son followed me into the bathroom with my prosthesis in hand, asking if i would ‘grow’ another breast, when i said i would be having some more surgery to ‘make’ another, he replied ‘just as well really Mum, as they are so obviously different sizes’!!
Kids!!! what would we do without them?
Anyway, meds kicked in now, sicky feeling passed, so must make the most of the window of opportunity and do the B… Ironing i keep threatening!!
Hugs and cheery smiles to all!
Lou xxx

Sue, Everything will be fine, try not worry too much,the 'gloop’as Mum calls it is ok to drink, and i’m sure all will be fine with you, please try not too worry xxx
Narnia, 3 weeks is ages - give em stick girl, the waiting is the worst,if you have a date it almost settles the nerves a bit if that makes sense)
Love again to all,
Lou xx

Hi all! Just logged on and catching up with all the hairy stories-fantastic-picked me up no end!
Think from what you are saying I must be at opposite ends of the country from most of you? Scripts are going to be free for all in Scotland from April I think but we have had a reduced rate for the last year or so-there are some benefits to being in the sticks!
Had a better night last night due to a little pill but decided not to take OH’s offer of a meal out as have developed cold sores on my nose and look like Rudolph-NOT conducive to a romantic night out methinks??
Know what you mean about getting organised Narnia-I feel I can’t plan anything especially workwise until I know when everything is kicking off. Maybe after Monday I will have a better idea. Anyone having treatment for grade 3 stage 1, no node involvement, HER2 neg E & P positive, to give me an idea what to expect so I can do some research before Monday? Lyn xx

Good evening everyone
Thankyou so much and big hug to u Lou for ur message of support re the body scan, I shall try not to worry but will be sooo relieved to get an all-clear. Watch this space as they say!!!
Narnia, I definately would contact them to see if you can start earlier as the waiting is often the worse bit for any treatment. I have to wait until 21st Jan but only because I still have some slight swelling post op that onc says he wants gone before starting - and I agree with him. I’m trying not to eat rubbish and eating salad, veg and fruit to try to be in tip top form ready to start. U have nothing to lose by asking the question I reckon - Good Luck x
Lynn I too suffer from cold sores and know exactly what ur going through …they’re awful things and even worse when ur glands swell up. Keep yer pecker up chuck it’s all part of the process unfortunately.
Well hubby has just announced tea is ready (pizza and salad - well I am allowed a little treat now and again :slight_smile: so must away and will post later.
Big hugs to everyone
Sue xxx

Hi All, ditto Lyn, I’m feeling like c**p today but reading about the hairy stories made me smile! My scalp is showing straight thru now with lots of bald patches, and what with the teenage spots that are sprouting all over my face, I do look a picture. Tomorrow if I feel up to it I’m gonna cut my hair as short as I can as I can’t stand looking this way. I agree with Lou, do ring and see if appt can be brought forward. I get anticipatory anxiety which is always, without exception, worse that the actual thing. Lyn, I think I’m same as you except I can’t remember what stage they said. Tumour was 2.5cms I think. I had a lot of node involvement though - 10 of the 18 were affected - which is why the plan changed from just radio and tamoxifen to adding chemo into the mix. My surgeon initially mentioned 8 cycles of chemo but after MDT meeting oncologist was happy with 6. I had to have a full body bone scan and a ct which were both clear, I believe they check all that again after treatment is complete and routinely after that. I did a bit of research beforehand as it helps me to feel in control a bit - a fallacy really because I don’t feel in control at all. But being informed does help, definitely. Another useful tip my chemo nurse gave me was to keep a chemo diary. I just write down which day it is - Day 1 is chemo day and day 21 last day before next chemo and just jot down how I feel. It helped when I saw the dr before my latest chemo as she decided to change nausea meds to see if it helped. I don’t write in every day, just when they’res something worth noting. I checked Day 3 from last chemo and I felt the way I feel today, whether a pattern will form I don’t know. Anyway, just a thought. Lou, what anti-sickness meds are you on, out of interest? And good on you if you can manage the ironing! All the best to everyone, have a good evening and love and hugs to all, Pat x

Hi Pat
Sorry you feel like poo today chuck and hope u feel better very soon.
I too had loads of node involvement (18 out of 18) which is probably why the onc has suggested the full 8 sessions of FEC - my tumour was 3cms and grade 3 aggressive but don’t know what stage.
I think this is why I’m getting in such a state about the body scan - I just want the blimmin thing done and results back (sorry Lou I’m letting the side down again worrying)
Funny you should mention a diary Pat as my brother-in-law and sister-in-law came to visit today and suggested I start to keep a diary once chemo starts! They even gave me a spare company note diary they had left over from giving them out at Xmas. Isn’t coincidence strange.
I hope your SEs stay to some form of pattern so that you can at least make plans for ur good days - The SEs are bad enough but it must make it a bit more bearable if u know when they’re going to happen and prepare yourself - Good luck with that chuck x
Ta Ta for now ladies - will post later.
Hugs and love to all
Sue x

Hi all,
Great to read all your posts and catch up with the news. Sorry you are not feeling great Pat - hopefuly a new haircut tomorrow will help you feel better. When I clippered my hair, my 14 year old said I looked much better and younger, and should have done it years ago - so much for my lovely (as I thought) long blonde hair!

Keeping a chemo diary really helps. We headed off on a trip to Aberdeen just after my scond chemo, and had a great time catching up with friends, but then on the journey home I just couldn’t get comfortable in the car, moaned and was generally grumpy and irritable for the whole long journey and then lost my temper big time as soon as we got home. I felt awful about it the next day, but then checked back to see what I’d been like afgter the first one, and yes - that had been my worst day too! Helped me understand and predict what was happening, and also helped to tick off each day.

Sue, good luck with the body scan. Waiting is such a pain isn’t it?

I’m busy counting down the days to my mastectomy now - next Wednesday. I’ve got a “look good feel better” session on tuesday afternoon, but hubby is abroad, not arriving here until Wednesday morning, so have arranged to go out with friends instead to make the most of my last night with 2 boobs, and hopefully looking beautified. Have any of you been to one of these sessions yet?

Gill - meant to say thank you for all your hospital tips. I’ve been busy downloading more stuff for my ipod (including Black Books), and also went and bought the “100 classic books” for my DS - although I’m not anticipating being in there long enough to read all 100!

Well it heading for 2am now, so guess I should go to bed, although sleep seems to be evading me at the moment.

Best wishes to all,
Julie
x

Hi Julie and everyone
After reading ur comments about the diary, I’m definately goin to keep one … really it’s one more helpful tool and very useful to be able to plan ahead whilst on the chemo.
I too have long blonde hair and about to have a crop in readiness - it’s strange isn’t it that when you have ur long hair, u think it’s ur best asset, but I’m finding more and more ladies in the same situation have had their hair cut really short and never looked back … they wished they’d done it years ago! Well if there is a positive side to having this disease, maybe a change of image for the better can only be a good thing.
I wish you the very best of luck for ur op on Wed … speaking from experience, honestly you will find the op a lot less traumatic than you envisage - the thinking about it beforehand is the worse bit. Are u having nodes removed too ?
Any questions u have about the op, no matter how small, please don’t hesitate to ask as that’s what we’re all here for chuck. x
I havn’t been on the LGFB session … no-ones mentioned that to me - do you have to make your own enquiries about that ?
Hope you managed to get some decent sleep.
Take care all and speak soon.
Sue x

Hi Sue and everyone,

Thanks for your encouragement re the op!. Yes, I will be having my nodes removed - they did a sentinal node biopsy back in July, and 2 out of 4 tested postive, so they have to go. I’ve never been much of a one for rubber gloves and so on, but have been trying to be good for a while now in readiness. I’ll also have to get used to using insect repellent as we live abroad with mozzies - again, I don’t normally react badly to insect bites, and there is no malaria where we are, so I’ve been a bit blase about repellent, but that will have to change. Must say that I am quite scared about lymphoedoema.

Look Good Feel Better is a charity supported by some of the big cosmetic houses, and they run sessions around the country (mine will be at Christies hospital in Manchester where I go for my treatment). I picked up a leaflet at the hospital, but they also have a website giving contact details. They can be very booked up so its worth calling them as soon as possible to try and get a place. Lots of women on this site have been on them and say they are great - and apparently you get a lovely goody bag at the end too!

Best wishes to all,
Julie
x

I have a look good feel better session booked for next month in Bristol, so i’d be interested to hear how you all get on ! Please let me know… :wink:

Hi Julie
You’ll be fine with ur op - you’ll be waking up before u know it. The drains are a bit of a nuisance, but I was up and walking around (drain bag in hand) the next morning and eagerly awaiting my visitors !! Make the most of the nice rest :slight_smile:
Yes I agree, wearing gloves for doing things is going to take some getting used to when you’ve never had to bother before … same with insect repellent and I have also stocked up on antiseptic cream (in case the cat has a mad half hour).
I too worry about the Lymphodeoma aspect, but you can only do as much as you can to prevent it and be ‘arm’ aware, keep doing the excercises and keep as healthy as you can I guess.
I too will be having my chemo at Christies, Manchester - you’ll have to let me know how you get on with ur Look Good Feel Better session on Tues - I will ring them tomorrow and see what slots they’ve got.
Narnia will definately let you know how it goes if mine’s before urs. Are u going to try for an earlier start date for ur chemo? Good luck if u do x
Pat - hope u feel better today chuck and manage to get ur hair cut today … big hug for u x
Well must away, hubby making ‘feed me’ noises and seeing as he made tea last night, I promised him a cooked brekky this morn (is it still morning? … Ooo just - no wonder he’s hungry !!!)
Take care everyone
Sue x

Hi all, I feel a bit better today, chopped hair last nite and today I am virtually bald on top and sides so wearing a little cotton hat. Soooooo flattering… At least I’m amusing myself but I think I need to shave it all off and be done with it as the process is so distressing and I really never thought it would be. Julie, lots and love and hugs for Wednesday, it’ll all be fine and over in no time. I’d love to hear how the LGFB sessions go - I’m looking fwd to mine in April which should coincide with the end of my chemo. I’ve written the scheduled dates for all chemos in my diary and it’s satisfying to cross each one off, lets u see a bit of ligth at the end of the tunnel somehow. Apparently at the sessions you’re given a terrific goody bag of well known cosmetics and then shown how to use them to best effect. I’ve also been told about other therapies available like aromatherapy, reiki, massage, yoga etc which are run by the Dimbleby centre at my hospital. It’s not necessarily for everyone but nice to know it’s available if you want it, also it’s for your partner, husband or whoever attends with you too which I think is great. Since this whole experience began, I’ve put myself in my family’s position and it must be so hard for them too. OH just wants to fix it, and because he can’t feels bad. Sue, I worry about Lymphodoema too, for the first few weeks I kept checking my arm but am less obsessive now. I’ve always had to wear gloves because of ezcema so that hasn’t been a problem. I have had problems with cording though, I still can’t completely straighten my arm. I see physio on 19th so hopefully she’ll tell me it’s okay. How are you doing Lou? Anyway, the sun is shining and hoepfully my meds will kick in soon and I’ll get something done. I’ve gone into a manic book-reading phase so am attacking my Maeve Binchys! Hope you all have a good sunday and feel well. Love and bigs hugs Pat x

Wow! So many of the same things I’m wondering about or have experienced! I’m in the far north of england and go to newcastle for treatment, though chemo in local town. Am having FEC-T before surgery, hopefully then a lumpectomy and radiotherapy, then any recon later. 3 FEC then 3 T, currently on 2nd wk following 2nd cycle FEC. Triple neg so no hormone tx needed. Why do some people have 6 and some 8? Read your thoughts Sue. Mine is Grade 3, 1 node radiologically suspicious, and 4cm. Gonna ask my onc, but mine is before surgery to shrink the blighter. My choice to do it this way around, as psychologically I want to see the chemo working and feel the shrinking to know it is worth the side effects. If it is having this impact on the tumour, then any other ca cells out there elsewhere should be feeling a headache too! I know that I can have the T part because I have a radiologically suspicious lymph node. If completely node neg, then guidelines are against use of T at that stage. As chemo is before surg, I cannot benefit from a sentinel lymph node biopsy, since diagnostic power is lost after chem and noone could be sure we were not missing something. So looks like full clearance. Like you Sue and Julie, am most concerned about lymphedema and prevention.

Early 40s, no family locally. Loadsa great mates, making it much easier than it otherwise would have been. Boss not letting me in to work, against doc’s advice as 3 docs think I am fit, but could be worse! But I plan to get pilots licence, want to adopt child or children and want to become more active in politics (even MP in time). I need my arms fully functioning! I already got a blood clot in my chemo arm and now have to have daily heparin injections (which combine with a needle phobia so great news!).

Free prescriptions from April, meanwhile bought a 3 month prepay cert which has really paid for itself. Like others of you say, many people think my wig makes me look loads younger and my balding head is really nicely shaped. Lucky me. Wig was free, as appliance officer came into chemo unit and as an “in-patient”, you can get wigs free. Used to be an NHS manager and think this may be a case of someone slightly using the rules to help patients! Thank God there are some in the NHS. It is not free for outpatients, and chemo units can be registered as O/P, day units or in-patient. Depends if “admitted” on the system, perhaps. Don’t want my unit in trouble, but think it may be misleading to suggest you can demand free wigs on NHS.

BCC have been great. Helpline was a real boon at the start. Rang night of diagnosis. Then when family, living in south, couldn’t get heads round it, mum rang and found it invaluable. Leaflets and advice brill. Then peer support phonecalls. Now registering for young persons weekend in Sheffield. And now found you guys here too. I have always felt incredibly fortunate and blessed with the terrific level of support I have, and the insider knowledge of NHS. It is important to seek out support and take it willingly. Julie, really interested to hear from you about your op and your thoughts and preventative measures re lymphedema, if and when you are willing. Good luck and God Bless all of us!

Hi Susie, yes, I’m going to phone the unit tomorrow and see if they can at least give me a date for starting.It’s not something i’m looking forward to, but i don’t like this feeling of being left in limbo, soif they can tell me at least I can sort things out in readiness.It may be that they are waiting for someone else to finish their last cycle, so I can get that slot, perhaps that’s why they said 3 weeks,but it’s awful having to wait!

Hi everyone
Narnia if that’s the case that they’re waiting for someone else to finish their cycle, I guess there’s not really much you can do, but it’s definately worth a try…let us know how u get on and good luck x
Hi and welcome Amandajane. Please try not to fret too much about the Lymphodeoma issue, as someone advised me not too long ago, it’s best if u take things one step at a time and if a problem does arise, tackle it as and when it happens. Difficult I know when ur in this situation and like me, are prone to a good old worry but u can end up going round in circles if u look too far ahead … believe me I speak from experience !!! Baby steps is best :slight_smile:
If it wasnt’ for the calming influence and the voices of reason from family, friends and you ladies, I’d have gone doolally by now!
By the way, how do you get a 3 month prepaid cert? I’m due to start my chemo on 21st Jan so guess there’ll be quite a few pills and potions on prescriptions at that time.
Glad ur feeling a bit better today Pat and you’ve now had ur hair cut. From what I’ve learned these physios are marvellous if ur struggling with ur arm movements and they’ll soon get you mobile again.
You can exercise urself until the cows come home and it definately makes a difference, but sometimes (and this goes for anything really) it’s best to admit u need a bit of extra help with something and then later u wonder ‘why didn’t I ask sooner?’
Hope all goes well for you on the 19th x
Hope everyone else is ok and having a good ole relaxing Sunday.
Well footy on shortly so need to set up me stall ready for the match (orange juice, banana, mobile etc)
Take care and loads o strength as always
Sue x

Hi everyone and all the lovely newbies!!!
Not posted today, had sense of humour failure - my mum rang me this morning and said ‘how u feeling today’?? i said great … silence!!! No!!! I’m not actually but i’m fed up with moaning so just trying to get on with it!!! OH has been fab as always!
Been a really lazy day,just bimbling about at home.
Anyway, think i may tempt the old taste buds with a small glass of wine (? well, i can try!!) tea is on the go, big hugs to everyone thats posted today, thinking of you ladies this week who are having surgery,
Bigs hugs,
Lou xxxx

Hi Tilly, i’m starting my chemo this coming wednesday and am absolutely terrified! My O/H and my daughter don’t want to talk about it even though O/H has been brilliant. They both just pretend it’s not happening, so we don’t talk about it, which is driving me a little potty.
I won’t type what i’ve had done or what’s happened to me as i’ve posted it on here loads of times and everyone’s probably sick of me keep talking about it! Lol If you want to read about what has happened since i discovered i have breast cancer, feel free to look for me on the forum.
If you ever want to talk i’m always here for you. Ive finished work now too so i too have had enough of Jeremy Kyle and Loose Women! I could do with some other form of distraction! Lol
Take care and hope to hear from you soon.
All my love and best wishes
Bikerbabe
xx

Hi all! Thought I would catch up with posts before I head in to onc tomorrow-need to go and write down all the things that have been going round my head the last few days-will probs forget something! Younger daughter has decided not to come tomorrow-something about having too much course work this week, so I am not pushing her.
I can understand the concerns about lymphoedema-I developed it in one leg very soon after last cancer surgery and then in the last year in the other leg too, but it is manageable. I was referred straight away to a specialist oedema physio and she has been fantastic both practically in the management of it but also being at the end of a phone or email whenever I have needed advice or support. You do have to be careful to avoid infection (risk of cellulitis).
Have been feeling really touchy last few days and nearly clobbered oh when he asked me what was wrong at bedtime last night… Are men really that insensitive!
Better go put some food on or the troops will be complaining.
Good luck for Wednesday Julie.
Hugz Lyn xx

Hi everyone - hope ur all ok and having a good Sunday.
Lyn I think being touchy sometimes is understandable in our position, and we tend to offload to those closest to us, nothing wrong with that :slight_smile: Good luck with the onc tomorrow.
Just want to say a special hello and welcome to Bikerbabe - I did a search and read your story and I’ve sent a post to you on the other thread - big hug to u x
I too start my chemo on 21st Jan so kinda at the same stage - anticipation ! I have finished work temporarily (off sick) too and doesn’t the daytime telly drive you crackers!!! I’m reading like mad at the moment and started doing massive jigsaws.
I’ve also got into ‘Deal or No Deal’ with Noel Edmunds on C4 - into it big time and won’t miss it - hubby thinks I’ve gone a bit potty but he’s catching the end of it when he gets in so I think he secretly likes it too :slight_smile:
Hope everyone else is ok
Take care and bye for now ladies
Sue x