I am actually based in St Ives, Cambs - but not a million milese away from you. I am 38, and was diagnosed in Feb 2012. Like you I am Her 2 positive but have finsihed my active treatment other than hormone therapy and reconstruction.
How are you getting on? When did you finish your rads - I have to say they made me more tired than i expected. I have been back working full time for a year now, and things are slowly returning to normal (whatever normal is!).
I eould be happy to chat - as I have not met many local ladies at all.
I'm near Cambridge - St Ives. I cant seem to find anyone else local though.
Nice to meet you all.
Hhey all the Wallace centre is cool. Just waiting for my dates for rads and I will be away there for a relexology session or two!
I'll let you all know dates and perhaps we can hook up. Day 2 of Tamoxifen x
Thanks for all the sage advice, I have been to my planning session and it was quick and easy, but, a bit messy with the ink,and I forgot my wet wipes as recommended but managed with some sugical spirit they had. They did mention that between 10 and 2 was the worst time for waiting so best to try and avoid those hours if possible. I found some leaflets, with some difficulty, about the Wallace Centre, I didn't have time to go this time but definately will next time. There is a website too, I notice. Looks like an amazing facility.Otherwise alls well and enjoying the gorgeous weather. Hope you are all well too.
Generally I feel great! But I do go up and down. I started walking between surgery and rads (I had chemo first) and then started a jogging/running programme and that felt fantastic.
I asked last Friday (2nd check-up) about the ribs being tender and was told that they might always feel tender just less so over time, which was a bit of a shock as the BCNs had said 1 - 2 years.
I'm still having to do the exercises as I get stiff sometimes (I had a Mx and full lymph node clearance) I include ones I found posted on this website by an american lady who had been shown exercises to prevent lymphodeama.
I get niggles and worries, currently have a rash which I'm watching, but generally I'm just happy to be here, even though I know heaven is waiting I would prefer to me with by children for some time to come.
Hope everything is going well Terrier.
bye all - Wizz
I seem to be fine on the tamoxifen too - taking it since the middle of January. A few hot flushes and night sweats but not much. I have found a friendly pharmacist who will dispense the Nolvadex brand on a generic prescription - it was she who suggested the Nolvadex after I'd asked not to have the CP Pharmaceuticals (now called something else) brand. From what I've heard the effects can wax and wane a bit, so I'm making the most of things being okay!
Terrier, I think you said you are off to Addenbrookes tomorrow to hear what the rest of your treatment will be? Good luck for that and I'll be thinking of you.
I'm off to the support group that meets at QEII this evening.
Thanks for all the tips Wizzbaby, I would like to ask how you are feeling after nearly a year since treatment? I am having my planning session next week, same consultant as lulu650, small world. Like Gingery and Wizzbaby have partly been treated privately.
Terrier, who started this thread, hope you are doing ok. Eliza, how are you finding the tamoxifen? I have been on it a couple of weeks now and feel fine so far..and my hair has started growing! Must be spring!
Hi Everyone in the Addenbrookes area
Sorry I lost track of this thread.
My only tip for radiotherapy, is to take along any cream you want to use to the planning session and they will check the contents list to see if it's OK. I used aqueas cream until I went red and then aloe vera gel, which really did the trick.
I too was treated privately up to radiotherapy. Gingery you will have BCN just keep pressing your surgeon or onc, they are great and will help if you need anything else e.g prothesis fitting.
I finished all my treatment in May of last year, but am most happy to give any information out if it will help.
all the best
Lots of good advice there, thank you ladies! I just keep thinking..You know..Had the surgeries, and the chemo , and a clean scan..do I really need to go into radiotherapy so soon? Why not have a nice long break and recuperate and heal, and then go for the burn later, if I must! I am feeling so good right now, don't want to spoil it..must be the weather, Lovely sunny day..
Planning was fine and quick! Pen marks all came off over my vest, so very good suggestions about the wet wipes Eliza. Treatment starts in 2/3 weeks.
Anyone at Addenbrookes do go to the wallace centre. I've borrowed Susan Love's breast book and a video on radiotherapy. Picked up some leaflets about free complementary therapies too!
My first consultation was over 2 hours so make sure you pick up a concessionary parking charge ticket from reception, otherwise you pay £6 instead of £3. Also once in daily a concessionary parking ticket will be £3 per week instead of daily.
Definitely send him on a massage course!
With regard to more rads tips - I'd say make sure you do the post surgery exercises so that you get good movement in your arm & shoulder. I saw a physio just before I left hospital the day after my surgery and he gave me their exercise leaflet and the one from BCC.
Also drink lots of water. The radiotherapists I saw suggested 2 litres a day and from time to time they asked if I was being sure to drink enough. I really did make an effort with this and I think it paid off.
They will draw on you each day you have rads and I found that if I wore a light coloured bra or top, it got marked with the pen (and if I wore a dark coloured one the aqueous cream made a mess of it!). So I used to take Simple wet wipes and remove the pen marks. Different hospitals seem to have different "rules" about washing, swimming etc.
As time went on I found wearing a bra (even a soft sports bra) uncomfortable so I went on to crop tops a size larger than normal and then soft tops which didn't rub in the fold under my breast. For the waiting around I always had a book and my ipod with me, although quite often there was lively chat in the waiting room!
There is a thread "Starting radio in Feb 09" in the Treatment section and that has some of the tips we gathered and shared as we went along, so you may find that useful.
Can't think of anything else!
lulu, how did your planning go today?
Day 2, post lump removal and feeling better the horrible thing is out of my body. I am off to search on line about the Life Mel honey! Also keen to know of any further tips you girls have on radiotherapy. Looks like I will be sending my husband on a massage course...
I think that the most important rads tip I was given was to start moisturising the area as soon as possible and to make sure you include the whole area. I wouldn't have gone down far enough if someone hadn't told me.
I drove myself to and from rads (down A1(M) and round M25 as I went to Mount Vernon) and it was only towards the end that I was getting tired. In fact, it wasn't until the week after rads that the fatigue really hit. I'm now 3 and a half weeks after finishing and still get very tired.
Don't know about Addenbrookes, but at Mount Vernon there is a great support centre and it offers complementary therapies and relaxation sessions. I found these really good, especially as I have some difficulty with my shoulder which gave problems at some points during treatment.
I have used something called "Heal Gel" which contains arnica amongst other things. Also something called "Life Mel" Honey which is specifically designed for chemotherapy and meant to boost the white blood cells, I heard about it from a bc nurse, but its been in the papers,too.Look them up..Touch wood so far I am feeling OK, and very positive. They are not cheap but I think about all the money I have saved on shampoo and haircuts and petrol lately!
I too am a great fan of arnica and I'm sure it made quite a difference with both surgery & rads.
Great news, terrier, and good luck for whatever is next. I'm now on tamoxifen and so far it isn't too bad.
Best wishes to all starting rads in the near future,
terrier, so pleased you posted. Looks like your prognosis is good.
At Addenbrookes tomorrow, being measured up!! for the radiotherapy. This is the second time I've been there, met with consultant George(?) Wilson who was really nice last week.
Keep in touch all at Addenbrookes!
Well, I had a lumpectomy today at Ely Hospital (It was the only list they could get me in on soonish). Following the fact the lymphs they took Tuesday last week were clear and the other lump was wasn't c. Feeling o.k, a little spaced, but that's all. I find out next Thursday at Addenbrookes what is next.... radiotherapy, chemo etc etc. So, I might be seeing you Willowbee and Lulu650 abd Wizzbaby! Wish me luck and why don't you all let me know dates when we can all get together?
I swear by Arnica. x
Hi, I am new to this discussion, I notice a couple of you are having radiotherapy at Addenbrokes. I have just finished chemotherapy following lumpectomy and will start radio beginning of May. Any tips would be greatly appreciated, for instance, how you felt, could you drive yourself or did you need taking in? Also practical stuff like parking.
Good luck to you all
I am in North Herts, Nr Ware. Diagnosed July 07 ,Surgery QE11, Chemo and now Herceptin at The Lister.
I would love to meet up for coffee and chat.
Wishing you all well, hope we can get together soon.
Managed to get an appt. for results on the 12th rather than 19th. Fingers crossed they haven't found anything unexpected.
How is everyone doing?
Have to say that now the clips are out I can admire the surgeon's handiwork. Very clean scar with good healing. Trying to build up strength but a 20min walk around the block left me tired. Still, slowly does it.
I'm expecting to be at Addenbrookes for the radiotherapy gingery. No-one has mentioned chemo so far but need to get the op results first.
How are you doing terrier?
where are you being treated?
Fortunately my private health care came with my job and I never really thought I'd use it to this extent, the one good thing is the speed in which treatment happens, I went for my original appointment 14th Oct 4pm and by 6pm I'd had mammo, needle aspiration and was told I had cancer, I went alone thinking I'd be told to stop wasting their time. Had WLE on 23rd Oct then 1st chemo 11th Nov now rads starting 16th March. My results after the WLE only took 5 days. The other thing is there's no question over having scans or meds regardless of expense but on the down side I don't think the care I've received is worth the expense (allbeit not out of my pocket). I don't know what it's like having chemo elsewhere but it's quite lonely sitting in a room by yourself with a drip and a tv. I don't see my onc unless I ask and I don't hear from the BC nurse.
Hope it goes ok tomorrow for you
We all seem quite near each other, particularly gingery who must only be 3 or 4 miles away.
Interested to hear about your experience in the private health care sector gingery.
The remaining staples out tomorrow.......ouch!!
I'm North Herts. I had my surgery at QEII Welwyn GS and follow ups will be at the Lister in Stevenage. I am now having rads at Mount Vernon. I could have been referred on to Addenbrookes but it would have been a few extra weeks waiting and I was keen to get on.
I have saved you as contacts. Keep in touch and then we can hook up hopefully, if we are all about at the same time.
It looks like I will be having a lumpectomy on the 24th, I may also need a full boob removal (can't bring myself to call it by its proper name).
Totally know what you mean abou the telling parents. I am more worried about them!
I'm between Harlow and Stortford, I've just finished my Chemo (last week) at the Rivers and due to start my Radio at Addenbrookes in 2 weeks, I have my planning session this Thursday.
Hi Terrier, sound like you're very near me. Just out of Harlow hospital today after a lumpectomy and node dissection. Kept me in for 6 days and only took drain out today before I went home. It's not as bad as I thought it would be and the hospital staff were very caring.
The hardest part is telling my family. Only told my brother today as he was on honeymoon and I didn't want to spoil it for him. Other people being upset really upsets me.
The second hardest part is the waiting. Waiting for the op.....waiting for results......treatment.....and hopefully the all clear.
I could be having radiotherapy at Addenbookes so hope to keep in touch.
All best wishes
I'm in the Cambridge area but have finished my treatment now. I'll be going to the Wallace Centre next week for one of their 'after treatment has finished' sessions.
PM me for any info you may need, part of my treatment was private but all the medics worked at Addenbrookes.
all the best for tomorrow
unfortunately not near you, I have my biopsy results on Tuesday, will be thinking of you tomorrow. Debs x
It's the day before the biopsy results and I know I have breast cancer, tomorrow is all about what the treatment path is. Anyway, would be good to hear from anyone in my area.