Anyone in norfolk?

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

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

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

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.

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

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

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

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

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

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

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

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.

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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

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

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

hiya gill- ive sent you a pm!

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

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

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