Anyone from East Kilbride/Glasgow area?

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Hi Girls

I guess I should probably apologise for my rant in my last post, but I was just a wee bit upset! - Anyway, my arm is still real sore, hot and red so my sister in law (who’s a nurse) checked it out at the weekend and thinks it looks like phlebitis which I think is what the doctor said, so I rang the BCN today and I’m going through to the chemo ward to get it checked out on Thursday. I’m also going to have a chat with her about how stressed I got last week about the injection SE’s.

We had a lovely time at the wedding on Saturday and everyone was fine about my no contact rule, which was great.

Jo – its great news that you’ve finished your chemo, sorry to hear you’ve been struggling with sickness. Has it got worse with the more CMF you’ve had? Apart from the injection SE’s, I’ve been fine with my first dose of CMF.

Fiona – Are your boys on holiday now? I can’t believe its your last chemo next Tues, I know you’re probably dreading it because of the SE’s, but it’s fantastic that you’re moving forward. My last Chemo is 10 weeks tomorrow if it all goes to plan. I had really severe back ache with the injections too and didn’t think my legs could support me one morning.

Sharon – Glad to hear you’ve started your rads and it’s going OK.

Sheila – It’s great that your hair is starting to come in. I hope you have a good time in Auchterardar? Do you have friends there? John’s aunty who’s daughters wedding we were at, at the weekend lives there.

Annie – I hope you have a great time in Blackpool.

Lynda – You’re looking great ! and thanks for all your advice – I’m glad I’m not the only one who worries, its just so scary that we now have this shadow of fear constantly with us.

Maggie – I’m sorry you’ve had to join us, but you’ll get loads of support here. Everyone is at various stages of treatment which helps if you need any advice.

Pauline – How are you coping with your rads ?

Thanks again for all your support.

Sending lots of cyber hugs to you all.

Helen

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Thank you girls for the wellcome…trying to get up to speed with all the abbreviations and the different stages that everyone is at, Ive not started my chemo yet…waiting for some more results. Was thinking of going to Maggie’s today as yesterday I an awful time (finally hit me) and I had tears and snorters most of the day (tough when there is no-one here to give me a cuddle) the dog is good but he’s rubbish at proper cuddles.

Maggie
xx

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Hi Maggie

Sorry to hear that you’re feeling so crap at the moment. I think waiting for results and for treatment to start is always a really difficult time. You will have days when you feel really down and scared, but I always try to focus on the positives; it could have been a lot worse. Can you speak to your BCN or head to Maggies , sometimes its easier talking to someone who’s not a friend or family.

I’ve been through to the Maggies centre once and it was really good, I stay near Stirling so its a bit of a trek to get to. I went on the Looking Good Feeling Better and Head Strong Course with Fiona, they were both great and would definitely recommend you get booked on them.

I was diagnosed in Feb (on my son’s 4th bday). I had a 11mm grade 3 BC, with a trace on my lymph node, I had surgery at beginning of March and started E-CMF Chemo at the end of March – I wore a cold cap for chemo, so have still got most of my hair, although its very fine. I should finish my chemo at the end of sept, and then onto radiotherapy at the Beatson. Like everyone else it was all abit of a shock, especially as I was still breastfeeding at the time. I have a 7, 4 & 1 yr old.

Hang in there – I’m sending you a cyber hug.

Take care

Helen

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Hi guys, hope its ok to join this thread as I stay in Gartcosh which comes under Glasgow, I was diagnosed with breast cancer on 1st June had a wle on 4th June which Mr Murphy my surgeon didnt get clearance so back on 25th June for second go which was a success, grade 2 15mm, no spread to lymphs, going to see oncologist next week to get my radiotherapy dates and to get a lump in my neck checked which they found when having second op!!!, started tamoxifin a few weeks ago. good days and bad days but my two sons keep me going. you are all so very brave x

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Hi Guys

Calling from Blackpool. Welcome to newbies. Come to think on it, we’re all kinda new as we are all going through treatment! Som eof us are a bit more seasoned newbies, I guess.

Sharon, so good to hear from you and that you have been awarded DLA! Hope it helps with the finacial stress , little as it is. Were you awarged middle or high rate?

I keep on about applications, I know. But DLA was designed for people going through our situation. It is taking way, way too long to decide, so PLEASE ensure you call NOW, not when money gets tight. You only get it as long as YOU ARE ILL, and it is only backdated from the date of application.

Fee, the end is now in sight for you. Well done! You have earned your stripes girl. Any bad s/e this time?

I have postponed my new chemo as I have to have dental work done. There is no raging urgency now as the tumour removal showed clear margins. I spoke to Martin at Hairmyres today as and confirmed that they are just covering all bases.

It just means that I will be travelling daily for rads 4/5 months or so down the line … in the midst of winter!.. seems never ending.

Jo, congrats on finishing chemo!!! Do you need any further treatment, or is it R&R??

Now trying to get a charger for my laptop! Bucketing today, yet yesterday was lovely and warm.

I am still trying to get finances in place, such a task!! I assumed all of this would be easy - ha!

We are going out for a meal at 7pm, leaving at 6.30, I was up till 2pm this morning (while since that happened)so am going for a shower and a nap now (feel like a 2 year old)

Speak soon,

Annie W xx

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Hello ladies.
A few questions if you don’t mind…
1.Sharon why are your fingernails and toenails falling off? Does that happen with everyone?
2. Im going into Maggie’s on thursday…does anyone have ideas on questions I should ask when Im there? (maybe the ones you wish you had asked and didn’t) Im going to talk about my finances.
3. What happens about wigs in Scotland…do we buy em or are they free?
Are they any good?

As you can see Im not getting much info from the hospital. I keep getting told there is support out there…but it’s nearly two months now and Im starting to feel like they have disowned me, at least Im relitively young (49) and going through this on my own…I’d hate to be elderly and on my own.

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Hi Maggie

Please don’t worry it was due to the Chemo Taxotere that I was on, it doesn’t hapen to everyone. Your first wig’s free then you pay prescription charge for further ones, wigs are great but i just didn’t feel comfortable in mine wore scarves most time. I’m on my own aswell, it may not seem like it now but you will get through this.

Helen - Dont worry about your wee rant your allowed and you had a very good reason. Glad you enjoyed the wedding.

Annie - wish i was away somewhere

Had a lovely lunch today in Cafe Andeluz

Speak soon

Sharon
xxxxx

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Hi peeps,

Welcome carmcg1…Hope you are healing well after your surgery, you’ll feel better when you get all your dates in for radiotherapy. I got mine in the other day and they start 1st Sept.

Maggie, I was under the impression that you get a free wig every 6 months. I have had one already and my next one isn’t due till October. Maybe Sharon means that if you get another one before your 6 months then you pay a prescription charge… Pauline can you clarify as I know you’ve not long had your 2nd wig? when you go for chemo you will be given your prescription by chemo nurse, ask for it if they forget(I had to). you will also be given piece of paper with names and adresses of wig suppliers in Glasgow, Try get in to see them all as people have different tastes, Andrea in st enoch’s square gets a very good name, some of the wigs are lovely, you will be surprised, I know I was and I’m a hairdreser!!!

When you go to Maggie’s try and have a list of questions to hand, they are very good. I spoke to Joan (a clinical advisor)who seemed to know all the right information to give about treatment, emotions, and side effects, and I came out of there much more knowledgeable than when I went in. Carol deals with the finances so be sure to put your name on her sheet when you go in as it’s a first come firt seen basis and she uses her sheet to call out your name. The hospital isn’t renowned for information and that’s where Maggie’s comes in… The staff all have medical oncology backgrounds so you can be sure they know their stuff, if you forget anything you can phone them up or call back.

good to hear Sharon that you had a nice lunch today.

love to everyone else
Fiona xxx

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Hi,

Meant to add that I have applied to go to the younger womens forum on 19/20th March next year. It is being held in the Westerwood hotel, Croy near Glagsgow…This is a free event and all accomodation and meals incl… I emailed <script type=“text/javascript”>eval(unescape(‘%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%6e%72%63%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%22%3e%6e%72%63%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script>, asked for booking form with name and address and prefered venue… it arrived in the post today. Just in case any of you girls fancied going, great chance for us all to meet up…

Hugs
Fiona xxx

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Thank you Feemac, Im a wee bit apprehensive about walking thru the doors on my own…but I will be fine.

Kinda scary the ‘wig thing’ but hey reading posts in here…and seeing young girls with lovely hair losing it…has given me the courage.
My hair is like a ‘bust mattress’ so no great loss.

One day at a time eh !!

hugs

Maggie xx

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Hi Maggie

As Fiona said I think you’ll be really surprised when you see how good wigs are. I was adament I wasn’t going to wear a wig, but I love my ‘new hair’ (wigs). I got mine from a hairdressors in Edinburgh and they were fantastic. They fitted it and cut it too. I also got myself a second one online(same make as the first) which my hairdressor trimmed for me. I wear my wig all the time apart from when its really hot, as my hair is now really fine and when you wear the cold cap during chemo you aren’t meant to wash it too much or use styling products, so it doesn’t look too great. I used to have shoulder length curly hair which I had cut prior to chemo. When I started wearing my wig I lost count of the number of people who commented about how lovely my hair was now I’d starting straightening it! - so I just joked that I wished it was my own!but it did make me feel alot more confident wearing it.

I do think that there is a general lack of information from the hospital about what resources are out there to support you. I just happened to stumble across this web-site and haven’t even heard about the Maggies centres until the girls here mentioned it.

I hope everyone else is fine

Take care all

Helen

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hiya maggie

i was told i could get wig every 6 months if i was still having treatment.

so far i havent worn mine yet as my head is still a bit prickly, but it does look really natural with highlights and layers… got a wedding this weekend so think its going to get its first outing.

hi carmcg… hope your doing ok

Fee the younger womens forum in march sounds quite good… will maybe look into that too.

Helen how you feeling now? my arm is still crap and is even more painful and hopefully gonna get physio and maybe a port or central line for the rest of my chemo.

Lxx

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Hi Lynda,

Happy Birthday!! hope you have a good day today and do something nice…

Well The boys are away to their Dad’s for two weeks and I’m enjoying the peace and quiet, it’s a shame I’ll be spending next week with my head down the toilet but at least I won’t have to worry about them and can concentrate on getting over the last of this bloody awful chemo!!! Will maybe take a trip down to Ayr tomorrow to my Dad’s, was going to go today but I think the rain is putting me off!!

Arm still really sore today, was playing up during the night. Helen I put a post up called “sore arm on chemo” a few days a go and one of the ladies put up some good tips for it, search for it and have a look yourself, really guite helpful.

Good to hear Carol that your boys are keeping you going. I find it quite hard sometimes as maybe being boys and the great age they’re at 12 and 15!! my 15ys old is all me, me, me…so I’m basically cook and taxi driver!! my 12 yr old is much better and is very sympathetic but I think they miss normality and Mum’s really shouldn’t be sick!

Annie, hope you’re having a blast in Blackpool… hope the weather is better for you… xxx

Ok gals off for a shower and a bit of breakfast.

Hugs
Fiona xxx

P.s googled the hotel venue for women’s forum… nice! got lots of health facilities, pool, sauna, massage e.c.t xxx

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Hi,

Helen… post called “sore veins due to chemo?” … if I had a memory it would be great!!!

Fiona xxx

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Morning Fiona, Sheila, Sharon, Helen, Carcmg, lulu, Annie and Cloudhowe, and anyone Ive forgotten. I will get to grips with everyone eventually.

Thank you for the information about the wig.
Thank you for all the great info.

I must say Iam really disappointed with the info coming from the hospital. Seems non existant.

Taking the bull by the horns myself.

I could do without it as I was told (by one of the bcns) that someone would come to my house and discuss EVERYTHING with me as Im quite isolated…as it is Im having to drive to Glasgow tomorrow (Maggie’s) and then Kilmarnock on Friday which is 2 hour round trip (I don’t know Kilmarnock at all)
It’s for a meeting at the Ayrshire Cancer Trust to try and find someone to give me advice on transport, local support groups (which I already know we don’t have here) and anything else that comes to mind. .

Blinking awful that Im having to do this…specially when my head is all over the place…but I don’t want to leave everything till the last minute

Ho hum…nothing is ever easy…is it ha ha

Hugs

Maggie
xx

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hi guys, I drove today for the third time, six weeks after my op and I am still sore, especially turning the wheel, is this normal?? When you get breast cancer, is anything ever normal again??

Carol x

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Hi Maggie and Carol,

Carol it is quite normal to be sore even after six weeks, can I ask if you’ve been doing the exercises that the hospital gave you? They are very good exercises but you have to be quite religious about and they are still important six weeks down the line. I’m still numb down the back of my arm 5 months later!! I did suffer from quite bad cording which stopped me getting my arm straight up but the answer to that was to get stuck into the exercises double the amount and it went away… I think we have to just put the next god knows how many months to one side and deal with what is flung at us, but then hopefully normality will return along with our hair!!!

Maggie, it’s a shame you have to go all the way down to Kilmarnock for to find out information!! is that because you come under Ayrshire. Maggie’s may be able to help you out with someone more local? You will need transport to hospital on chemo days as you will be unable to drive, The Beatson have a patient transport service but I don’t know what sort of area it covers. I know that certain cancer charities provide a volunteer patient transport service. My father in law used to get this from Ayr to the Beatson. There is also a very good Macmillan cancer support advisor who is based at the reception area in the Beatson itself. I can certainaly get you her phone number when I’m there on Tuesday…? I have not managed to find any support groups in my area, which is Glasgow!!! but then I haven’t really needed to, I thoroughly enjoy the maggie’s centre, I go to the nutrition morning 10.30 till 12pm on Fri. Great bunch of people, full of laughs… all ages, taking about food (my favourite!!)and you get to cook every 2nd week… the other week lunch is provided buffet style!! yummy!! I haven’t been the last couple of weeks and really miss it…and it’ll be another couple of weeks till can get back again!!!

I am currently getting the FEC chemo you mentioned. I am also Her2 positive as well which means I will get herceptin after FEC has finished.

Big Hugs
Fiona xxxx

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Hi Carol

As well as the advice and support you receive from the other users you may find the BCC booklet ‘Your operation and recovery’ helpful. It includes information on recovery times. If you would like a copy just follow the link below:-
breastcancercare.org.uk/upload/pdf/your_op_and_recovery_07_web_0.pdf

I hope this is helpful.

Kind regards
Sam (BCC Facilitator)

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Hi All

Happy Birthday Lynda - I hope you’ve had a good day.

Fiona - I’ve just read our last posts and realised just how far we’ve come in the last 5 months.

Maggie - Good luck tomorrow at the Maggies centre (if it tomorrow you’re going; chemo brain!).

Hope everyone else is keeping well. Off to bath kids.

Hugs

Helen

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Hi girls - seems to be lots going on just now.
Sharon - hope rads going OK and you’re not too exhausted. Glad you got DLA sorted - horrible when nails start to fall out. I used to get infection in nails and apart from giving antibiotics no one was interested.
Helen - glad you got to wedding