Anyone in norfolk?

[Guest user]

Hey debbie. Busy day for you!

How do you arrange the wig thing then? The headscarf i got is actually quite nice and looks ok. Just feel like i am at work in theatre as they wear little tied back headscarfs there!!

anyway i am packed up ready to go. Long way with two unhappy babies i feel...!hey ho.

Enjoy the sun debbie

sue

[Guest user]

Hello Evie - went to the big C this morning and met the wig lady who was lovely - she had a big choice and I have picked a style slightly shorter than what my own hair was like but pretty similar - had to order it in the colour i wanted so will be here in about a week. My son Joe is 10 - he came with me and was delighted to find an Xbox360 at the big C and wants to go back tomorrow !! The Mac D was a big draw too. Hope u dont dismiss the wig - its good to have in reserve AND FREE - it was nice to see me looking back in the mirror - i may shave of the crew cut yet as the scarf was a bit itchy in the heat today - god knows what a wig will be like !! Have a lovely weekend away - think I will go to the beach tomorrow if its nice- Joe loves the water and goes in however cold the sea is - mad boy. Take care, and all enjoy the nice weather xx debbie xx

[Guest user]

Ah glad you are ok debbie. Ive bought a head wrap off the web to stick in my drawer. Not sure sbout a wig as itsd set to be a hot summer and i think my 9mth old would whip it off anyway as she pulls my hair a lot!!

I think it is prob mac d thats driving your little one! how old is he/she?

going to family do in preston tomorrow= think we will roast in car!

[Guest user]

Hello Evie, I am doing really well thanks, it took a couple of days longer to feel like myself again than the first bout of chemo but went to a Bodyshop party last nite and had a glass of wine and felt great. Going to the Big C this morning to meet the wig lady - I am more into the scarves now but its handy to have it in the drawer I suppose ( Ihave bought one too but not sure - its being cut at the weekend so I might have nicer thoughts bout it afterwards)Glad you are ok and enjoying your little ones - my son is coming with me today (think its only to get a Mac D's on the way back) looks like its going to be a lovely day in Norfolk today so enjoy all xx Debbiexx

[Guest user]

hey norfolk ladies how is everyone doing?
How was your chemo debs?

Have you heard anything suz?

I am enjoying my lovely girls while i still feel well!!

X

[Guest user]

Sounds sensible debs!

Have not been to Big C centre. Still feel bit sensitive about the whole cancer thing and i am certainly not ready for wigs, scarfs or pampering! Time will change that i am sure!

Glad you dont feel too bad debs and altho i hope there isnt a big delay to chemo you have made me feel a bit better if there is.

Suz i hope you get your letter soon.

x

[Guest user]

Hi girls, I still have a bit of hair!! My friend thought it would be mad to shave it right off in case it doesn't come out anymore than it has so we have put it on hold for a few days or so - she cut it as short as poss tho and its quite invigorating - except I look like my brother LOL. Had a good day today, got back from friends and got an hours kip in before starting dinner so that really helped. Feel I am picking up again now which is good. Try not to worry about the delay in starting chemo - I had my 1st WLE on 29 Jan and then they wanted a bigger margin - discussed with the ONC my fears on delaying chemo so long and he insisted in the scheme of things it was better to go for the 2nd op and delay chemo so I had a huge gap from WLE to chemo. Hope u all had a good day - I really enjoy chatting to you guys - I too am waiting for next pampering session - perhaps we will get the same date - will have to discuss on here in case we can meet up luv n hugs Debbie xx

[Guest user]

I have short hair but plan to make it shorter. Not going to try cold cap as it means you have to stay longer in the "suite" and i want to get the hell out of there back to my babies!
More upset about loosing eye lashes rather than my hair if i am honest!! love my mascara!

Work have put me off sick from 1st june regardless of when treatment starts i found out today. Not negotiable so thats fine with me! Got a physical and pretty dirty job so guess they dont feel i would be up to it.

[Guest user]

Yes thats what mine and the ONC said to me too!! The worst bit is the waiting, if they could just give you a date then at least you could plan round it! Frustrating to say the least.
Need to get my hair cut aswell before i start as am going to try the cold cap - are you going to try that?
My GP signed me off for 6 weeks after my surgery and had planned that within that time i would have had 1 cycle of chemo so would know how i feel before returning to work, but hasn't worked out that way!

[Guest user]

Ah suz thats not good! My BCN said you normally start 10-14 days after your ONC appointment! Jeez, i really hope i dont have to wait too long. poor you- nothing worse than limbo!

I am due back to work on 1st june after 2yrs off having babies and i must admit i really didnt want to go back just for a couple of weeks but it might be longer huh? Do miss my job but didnt really want the hassle of it just before chemo! in full time mummy mode still!!

Ahhh, the the wonderful world of breast cancer! Nooottttt..!

[Guest user]

Hi Evie & Debbie,
Just thought say hi as am going through this too and am 36 tomorrow so know how hard it is Evie being young!
I went and say the Onc on 9 May and am still waiting for my date of when i start chemo, which is so frustrating. I now the N&N are really busy at the moment but its so frustrating as i just want to get on with it. Hopefully when you see your Onc your appointment will come through a bit quicker.
I went to the scarf tying session at the Big C centre last Tuesday and the ladies who runs the session was really helpful. I twas good to learn how to tie the scarves before loosing my hair so i will be prepared - well as best i can be - and know what to do. I'm on the waiting list for the pampering session at the Big C and am looking forward to that.
Hope you get on ok at the ONC and Debbie hope the head shaving goes okay for you - i'm not looking forward to that bit when my time comes!
Take care
Suz xx

[Guest user]

thank you debbie!
ITs reall really nice to have some reassurance. i read that alright tit blog and that lady really suffered and didnt hold back on her telling you!

I am worried as i have a 2yr old and a 9mth old and Ive been a stay at home mum since my eldest was born.
I do have a fab mum and hubbie tho.

ps good luck with head shave. i will do just the same should the need arise!

[Guest user]

Hi Evie, the chemo has been fine for me but reading others posts not everyone has the same reaction - you are young tho and I am sure you will be fine (I am 48 by the way) was a late starter having Joe. This 2nd dose has been about the same - just a bit more tired I think. The only tips I have are sleep IF you can, take all the drugs they give you, take your steroids before 3pm or else you are awake in the early hours, drink a lot and dont panic. You get a funny taste in the mouth too and I got ulcers but they gave me a good mouth wash and they have cleared - pineapple chunks are great for taking the taste away too. Off to my friends for the shaving of the head at lunchtime, Joe said whats on my head at the mo looks like Nanny McPhee at the start of the film - cant wait to get it off now - its all over the house too! The 10th will come soon enough - I thought the waiting to start was so hard too, once u have yr first chemo date you can more or less work out when its all done and start thinking about normality - I will be done before xmas so that is a good place to start!! Have a good day, take care, love Debbie xx

[Guest user]

I think you are right- people have really surprised me how that have reacted to the news. My brother has been a crying wreck which totally out of character! Think mum in law is a bit stand offish and i have been told i scare her! Ha!
Dont think my little girl will treat me any differently either!

Perhaps you have already made your decision about your other half..sometimes takes a big event to make you re-evaluated stuff! My hubbie is excellent-a bit useless practically-but he listens while i cry and scream without judging my crazy rantings!

I will know more on 10th june i guess. My lymph nodes are clear but because i am 32 i will be treated to the works! Should be 4 cycles bt dont even know that.

By the sounds of you- chemo is just doable??

any tips?
x

[Guest user]

Hi Evie, everyone deals with it differently. Perhaps mum in law just doesnt know what to say to you. My best buddie has been my little un - he carries on as if nothing has happened, treats me the same, tells me he loves me and likes pulling my hair out thru his fingers BLESS HIM! Mum & sis keep getting tearful on me which dont help much. My ex has been good - taking Joe out (my son) etc. I am seeing a chap who is 15 years younger than me but acts 10 years older (its only been about 9 months)and to be honest he has been useless! I am thinking about calling it a day - he doesnt come near me for a few days after chemo - i think he thinks he will pick up something and he hasnt said once that the scarves look nice or anything like that - you just need a little boost sometimes eh? He didnt come to any appts with me, diagnosis etc - actually writing it all down makes me wonder what I am dragging my feet for! LOL - will let u know what i decide - hope you are keeping well - dont forget any help I can give, just ask - I have one more FEC chemo in June then 3 of something else - I forgot what they said now but knowing what its called changes nothing i guess - I have rads for 6 weeks after that - keep in touch , bye for now, Debbie xx

[Guest user]

Thank you debbie! Have had inlws down so not been online!
I am a midwife at the n and and and know nothing about the cancer facilities so thankyou!!

I am totally sick with thinking about it all now. Having the inlaws did not help. The mum just glossed over everyting and nevber asked how i was giving the impression she could not care less when i know she does! My hubbie said it was her way of dealing with it- ie dotn ask and you wont know the horrible truths but i felt like screaming the whole weekend! Ranted at my hubbie in the car and felt better! Poor man

North Walsham not too far.
Will have to form a norfolk meet up perhaps???!
Thanks again- the more you know, the better it feels.

[Guest user]

Hi Evie , just realised you work at the N&N so you prob know all about the Weybourne Unit - hope you got through the long post without dropping off! Feel loads better today and going to a BBQ with all my family later on - the weather is looking great, hope everyone has a good day too, lots a love, Debbie x

[Guest user]

Hello Evie - the doctors and nurses especially are lovely. I have 4 more chemos followed by 6 weeks of radiotherapy - my next is 11 june so you will have met your onc by then. After u see the doc they take u round the weybourne unit - its a series of chairs in their own little areas but not closed in. Some people sit there on like a drip type chemo but the FEC that I am on is syringed in by a nurse - mine takes just under the hour so I have a nurse there the whole time and we cover many subjects! There is a constant supply of tea n biscuits and its very very bearable. Have u been to the big C yet? I am waiting for a call to go on a "pampering session" they tell you how to care for your skin and u get make up tips, eyebrows etc and I am told you are given about £60 worth of products to take home!!! Lots of info available too and a nice calm atmosphere, going for the NHS wig appt Friday but my mum and brother are also chipping in for another one so I am off to Debenhams for a try on on Wednesday yippee. I think waiting to start is the worst - once you know what type of Chemo they are giving you, you can look up side effects etc, as I said before, mine have been 'bearable' so far. Its lovely talking to you, I am in N Walsham by the way so not too far away , you take care, speak soon, love Debbie

[Guest user]

Hey there.

2nd chemo down- how many to go now Debbie?
Are the nurses and dr's nice at the n and n?
Ive got my ONC appt on 10th june with Dr Hemming?
They reakon i will start chemo about 10 days after the appointment. Does that sound about right?

XX

[Guest user]

Hello Norfolk buddies, hope u are all ok. Had my 2nd lot of chemo on Thursday at the N&N and not doing too badly - was awake in the early hours with nausea and am pretty knackered today - my 10 year old has gone to his dads so i am able to doze and do bits and pieces. My mate is shaving my hair off for me on Tuesday (or I could go out in a strong breeze and let it blow away). Didnt bother with the cold cap this time as there was so little left. Have come to terms with it eventually - had a velcro fringe arrive this morning to go under the scarf as I hate my face without the fringe thing - only had a little play with it - looks like it could work with a little tweaking or it may look like a hairy tarantula hanging down my face. I am going for a wig too - might as well cover all bases eh?? Keep smiling girls its a horrible journey we are on but we all have light at the end of the tunnel. Love to all, Debbie xx

[Guest user]

hiya gill- ive sent you a pm!

[Guest user]

Hi all
thanks for the welcome and the information. Looked at the Radiology article, and they say people are waiting around 8 weeks instead of 6.
I will try to get down to the Big C, it sounds good.
I know from when my mother was ill that the support groups are great.

Evie - good luck today. I will be thinking of you today. Am still waiting to hear when to go in for more tests. The waiting is horrible isn't it - it has been 2 months since I went to the doctor about the lump (I don't think they took it too seriously because there was pain too), and I just want to get on with it now.
Have been searching the internet and changing my diet drastically. Have bought some books, which should arrive today.

I am so cross about this, and am determined to do everything in my power to get through it.

I live in Horsford Evie - a short hop away. It is half term next week so I will have my children at home (who I haven't told yet), but maybe you would like to meet up some time? We seem to be at a very similar stage.

Thanks Suz, thanks msmolly for your replies, it is nice to know there are people out there, if you know what I mean!

Gill x

[Guest user]

Hi all,

Abitdotty - there is an article (11.05.09) on the EDP24 site about the radiotherapy delays (just search for radiotherapy).

MsMolly - did you know there is a Reconstruction support group in Norwich called Keeping Abreast? Lots of info on their website - keepingabreast.org.uk. There is a meeting tonight (May 20th) at NNUH. They generally have a speaker and then coffee and a chance to talk and some ladies show their reconstructions in a separate room. You can also ask your bcn to refer you to the reconstruction nurse (Ruth) who is really helpful.

I've also found other support groups in Norwich really helpful - to avoid feeling so islolated especially if you're waiting for results/treatment. Amongst others are :

The Younger Womens Group (for anyone under 50 I think but it is flexible) is a friendly informal group meets monthly. The next date is Thurs 28th May. Contact is Anna - 01603 615106.

Post surgery exercise (Badminton/Yoga/Swimming) at UEA Sportspark on Wednesday mornings - contact is Coral 01953 605208.

BigC Centre would have details of other support groups.

Best Wishes all

Misha

[Guest user]

Hi Ladies,
You are in gresat hands with the N&N, they have been brilliant with me and my BCN is fantastic, don't know how i would have got through this without her support.

I'm only 35 so getting this was such a shock being quite young as well. Had a mastectomy 4 weeks ago and all healed up nicely. Getting movment back in my arm slowly, was quite funny afterwards getting my husband to shower me and wash my hair cos i couldn't do either of these myself at that time! Watching him trying to put my hair up and ending up like pineapple head was quite amusing! You do get to laugh at some stupid things and think thats helped me loads!

Debbie good to know that the waiting for chemo is normal so will try not to worry about when that will start. Hope you're gettin on okay and good luck for your next lot of treatment.

Gill, i found the Big C Centre at the hospital really helpful, they have a libary up there so you can borrow books and make sure you get yourself booked in on the Look Good Feel Better sessions. Also you get free massages and reflexology so make sure you take advantage of that too to make you feel better. I'm gong up there today for a scarf tying session so when i loose my hair i'll be prepared.

Take care all.
lol Suz xx

[Guest user]

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[Guest user]

I live in Taverham by norwich and my care will be at the n and n too. Get some results tomorrow then the big meet with the consultant on friday for my plan of care! Grrreaaat!

I didnt know there was a back log at the n and n for radio- its a great hospital but i am not hugely surprised as i work there and the hospital is just too small for the population it serves.

[Guest user]

Hi
I was just diagnosed on Thursday. Apparantly a small lump, but I have been feeling ill for quite some time (couple of years), so am worried that the MRI etc. will bring up more.
Am 44, live near Norwich, have 3 beautiful children aged 9, 7 and 3 and a lovely husband (threw a surprise 40th birthday party for him on Saturday).
Just wanted to say hi really. Feeling a little lost. A little scared by the fact that Radiotherapy in NNUH is backed up (does anyone have the article I can read?). A little lost and scared for my kids.
Gill

[Guest user]

Hello Suz, I had first op in Jan and 2nd op 12 March - didnt have first chemo til 30th April - you do have to heal a little so dont worry too much - I was worried that having another op to get a wider margin was delaying chemo too long but the oncologist assured me it would not affect the prognosis etc. A nurse told me if they are particularly worried about your case you are fast tracked sooner so I took it that all my results were "normal" enough for me to join the queue, however I did tell my BC nurse that it seemed to be taking forever and later that day the chemo unit rang me with a date to start - may be coincidence ??? I found the first lot of chemo absolutely fine and apart from a couple of days feeling sick bounced back quickly and have been at work as normal - don't know if its a slow build up and you get more poorly after each one - will let u know on that one next week as next lot is on Thursday. Take care and try not to worry - it'll come soon enough - happy to talk anytime, lots a love, Debbie xx

[Guest user]

Hi everyone,

Hope everyones treatments are going well?
I'm still waiting to find out when i start chemo and the waiting is doing my head in! I had my opp on 17th April and would have thought i would have started chemo by now but haven't heard anything. Am becoming really frustrated as just want to get on with this so i can then get on with rest of my life. Hospital have said they are really busy at the moment which i understand but wish they could tell me a date even if its 3 weeks time so i can try and plan things in!
Did anyone else have these frustrations and time gap between opp and starting chemo?
Keep the positive thoughts and beleifs going ladies!
lol
Suz xx

[Guest user]

Hello ladies - I am about to have my 2nd FEC chemo at N&N on THursday 21/5 - I had the cold cap on for the first chemo sessions which I found very bearable and all seemed well on the hair front but the last 2/3 days I have been losing it fast - not sure if it will settle down or just gradually go! Had my lump and 3 lymph nodes removed at the end of January but had a further op in early March for them to get a wider margin which was fine thank god. Happy to hear from anyone who would like to chat and share experiences - its all so confusing and scary isnt it - love to you all - keep well and positive - how often have u been told that - lol xx

[Guest user]

Hi Suz,

Hope your treatment plan is a bit clearer now and good luck with it all.

I didn't have radiotherapy myself but several people I have met have mentioned a radiotherapy open evening that NNUH run approximately monthly where you can have a tour of the treatment rooms and learn more about what to expect - apparently it is very helpful.

I heard on the local news that there are delays at the moment for radiotherapy at NNUH due to staff shortages. Hope you don't get caught up in that. Will you be having chemo first?

Best Wishes
Misha

[Guest user]

Thanks Misha for your comments and details about the group at the Assembley Rooms.
I found out last week that my lump was 3cm and out of the 16 lymph nodes that were removed it was in 2 of them. So was quite pleased with this result. I need chemo and radiotherapy and have another hospital appointment today to find out when that starts.
Even though in a funny sort of way i always wanted to have chemo to give me the best possible chance in the future, now that its here and about to start am really apprenhensive. I've got really long dark hair and loosing that to me is worse than having a mastecomy. I know it will grow back and that the wigs are meant to be really good, but to me that makes me who i am.

Hope you're getting on okay.

Suz x

[Guest user]

Hi Suz,

Good luck with your appointment tomorrow. The waiting is always the worst part.

Another thing at Norwich is that you will be invited to a relaxtion group run at the Assembly Rooms - usually a few months after surgery. I can really recommend this. The group I attended was so helpful - there were people further on in treatment and some who had just had surgery. It was encouraging to see those 1 or 2 years down the line and getting their lives back. Although everyone's treatment is different we've all sat there and been told we have cancer which I think is a big thing psychologically. For me it felt like a death sentence even though survival stats are improving all the time. There was an instant bond between us all in the group and talking really seems to help.

All the best and please update the site with your news.

Misha

[Guest user]

Hi, i haven't been on here before as this is all rather new to me!

I've just had a mastectomy nearly two weeks ago and had heard about the post surgery group at the UEA and the Young Womens group so may well come along once i'm a bit more mobile.

I'll find out on Thursday the results from the surgery and what grade etc it is and what further treatement i'm going to need, so bit anxious about that.

[Guest user]

Yes! I live in Martham, just north of Yarmouth, and I'd be very happy to get together or talk on the phone.
Age 57, wonderful husband & 17yr old son. Having herceptin at the James Paget's Sandra Chapman Centre every 3rd Wednesday, and doing really well.
What's your situation?
Regards, Lynn

[Guest user]

Hi Jess,

What stage are you at? Are you being treated at the Norfolk & Norwich?
The BigC centre there is a great contact point for the various support groups / other activities in the area. I go to the post surgery exercise group at Sportspark UEA (badminton/yoga/swimming) and the Younger Womens group (friendly informal social meetings) but there are quite a few other groups too. The hospital has a reconstruction support group too.

I had double mastectomy last May and now awaiting further recon surgery. It has really helped me to meet others with bc.

Best Wishes
Misha

[Guest user]

hi there. anyone in Norfolk or Great Yarmouth area? would love to meet up with people in the same situation for coffee/ lunch....vino??!!