I was dx April 2009 and have been through the usual (!!) if such a thing exists. ( wle, mx with immediate recon, chemo and a further op to adjust problems with recon!)
I’m not a constant poster as life seems to take over though I do try to pop in when I can.
If any of you ladies in this area,(I’m in Hascombe), would like to get together let me know. I would love to get you all over for tea/coffee and have a catch up.
Let me know.
(having a problem with the “o” on my laptop… hope I caught them all!)
Hi there Lee I am waiting for a letter from Guildford Royal surrey to have a scan before starting rads.
I feel I am one of the lucky ones as I was dx nov 09 with dcis had 2 ops and have been taking Arimidex for a month now.
I see mr K(not sure if I should reveal his name on here!) I have been well looked after but unlike some ladies on here I was not given choices I just went along with it all and trusted they know best.I had a lot taken away with the second op I was told and I quote "it was deep and a lot of it"had my 2nd op 29th jan this year it would have been sooner if it was not for the snow so its been a long journey and I hope I will get my rads very soon.
As you had chemo you may not know about rads but I have been told 15 rads over 5 weeks mon-wed and fri I have not seen this before as other ladies seem to have it 5 days a week with weekends off!
Hi Ladies,
I am almost halfway through rads at Guildford. I had the choice whether I wanted to do 15 every day Monday to Friday or every other day which would take 5 weeks instead of 3. I opted for 3 to get it over with but it is quite a strain travelling on the lovely M25 every day.
Linda you will be well looked after, the staff are lovely in radiotherapy and so far I think the most I have waited is 20 minutes when they were running a little late. Normally I am on time and have been in and out in a little over 10 minutes.
Take care,
Love to you both,
Jane xx
Hi Jane thanks for your reply and feel better already its lovely to hear from someone who has been through it at the same hospital I was not given the choice of going every day I was told “we at this hospital only do 3 days a week” bit odd don’t you think. I recieved appointment through only today to tell me the scan is the end of this month and rads starting 2 weeks after whoopie !!!glad to get it started.
Hope you are coping ok with your rads Jane were you advised which creams/soaps to use as I know hospitals vary. take care.
Hi girls! I was dx in early feb having been monitored at the Jarvis centre due to an ever increasing family history. I too am seeing Mr K and find him very approachable. I had a lumpectomy in late Feb and a bit more for clear margins a week later. Satisfied its gone. Saw genetics people last week who advised me to have a double mastectomy as I am highly likely to get a recurrence. Am relieved. The lovely Mr K is away and doesnt do DIEP flap recons. Does anyone know if any other surgeon does them locally?
Hi Ladies,
I am not under Mr K! Not sure whether that made a difference with 3 or 5 weeks.
Linda, your scan will be to allow them to do the planning for rads and they will draw on you with a pen which washes off and you will have probably 2 marks which they will then prick you slightly with a needle so that the pen stays and these will be your tattoos which are needed for your rads every day. It truly doesn’t hurt. These little pin pricks are very important and look like a little blackhead.
You will be advised to find a deodorant which does not have aluminium in it which you can find in Holland and Barrett or Superdrug I think I found one. Any washing in that area must not be with perfumed soaps, I use only simple soap anyway but you do need to keep the area perfume free. Get a tub of Aqueous cream and use it twice a day. Because I had a mx after 3 lumpectomies I am given a large wax filled pad which they put over my scar for the first half of the treatments. This helps the skin not to be sore. I am just starting to get a little pink now after 7 treatments so we shall have to wait and see what happens without the pad. I am getting tired now but that could be that our trip to Guildford is 60 miles a day and I am finding that a bit of a strain even though I am not driving!!
You will be fine, its a lot easier than the chemo!!
Nickynackynoo, I am also hoping to have a mx on the other breast as I had lobular as well as ductal cancer and a huge amount too although luckily it had not affected my nodes. There is supposed to be a higher chance of recurrence with lobular. I will have to think about recon later this year but can’t get my head round it yet!!
Love to you all,
Jane xx
Hello Jane - Good to see you on here, again. I finished my rads on Jan 8th and have recovered now, I think! Not too long to go now until you finish. Good luck with the rest of them.
Secondary diagnosis one week after primary diagnosis just over a year ago. 6 months chemo with herceptin. Then stopped herceptin in january, had mx ad anc. Started lapatinib with xeloda in March but had severe drugs reaction which was thought initially to be xeloda, but since worked out to be lapatinib. have had week of steroids and piriton to clean up the rash. See oncologist tomorrow.
sorry I haven’t really been on here since I started the thread which isn’t good. Life is a bit hectic here as my huse is going n the market soon and I’ve been trying to get all the things that haven’t been working properly sorted out.
Snoogle, I do hope that the rash has improved and that things went well with your oncologist.
Linda, you’re right, I didn’t have rads so know nothing about them. I was heading that way until they didn’t get clear margins at the first WLE so plans were changed.
I have now finished treatment as being triple negative there is no medication I can take. I may need more ops though…we’ll see.
I’m doing okay now almost 5 months after the last chemo though energy levels aren’t yet what they were…do they ever come back?
Leave on Monday for my first break away since dx last April so really looking forward to getting away from it all with only two of my 3 children but the other one will return from gap year working in Canada 2 days after we get back…can’t wait to see her as she’s been away since just after I finished chemo…I have a little bit of hair now…not much!
I may not get back on here before I leave as I still have loads to organise but nice to speak to you all.
Hi Girls,
Thanks for replying Jane and Lee, its good to touch base with you, Sorry you all seem to be going through the wars whereas my exeriences have been easy so far. However this is such a roller-coaster ride that I think anything can happen. I’ll stick to the Brownie-Guide code and be prepared!
Nickynackynoo x
should be packing but have been trying to put together some kind of a wardrobe for my holiday… you have to laugh really but it’s quite a task because I am just so lopsided! I know it’s tricky for the surgeons (and I had one who is considered the best as he is one of the new breed of onco-plastic surgeons) but they don’t seem to make allowance for the fact that we lose weight during all the ops, chemo and general shock of the whole thing then, I at least, have put weight on…all very acceptable as I was small to start with then ended up looking like skin and bone…not a great look… but my implant has been matched to that reduced breast!
I now have a much bigger left boob which is…mmmm…a bit droopy…and a much smaller and high right boob…what can you do!
My bedroom is covered in clothes and am beginning to wonder why I thought I could do a beach holiday! What the heck…so looking forward to sitting in the shade and reading while two of my children do the cative stuff…well, maybe one of them.
Bothered about my animals… I see that at least two of you have dogs so you will understand (I hope!) waht it’s like…I am particularly silly about them, particularly the 6 month old cockerpoo (cocker spaniel/poodle cross) who was a rewdard to myself just after my last chemo… well, it seemed like a good idea at the time! I adore her but she’s hard work and still learning lots so hope my (ex)husband, who is helping look after things, can cope!!
Nickynackynoo, don’t feel as if your journey is any less just because you have had less treatment or whatever. We all deal with things differently so it’s impossible to tell how the diagnosis of cancer and its subsequent treatment impacts on each individual.
I hope that you all have a happy and peaceful Easter break.
lots of love
Lee x
p.s. still having problems with the “o” on my laptop! Any other mistakes are down to me!!
A new one for the Guildford group. Just had a WLE and SNB (on Friday 26th), back home on my own now and feeling really pretty well.
I am rather worried about rads and hope to be able to continue working, particularly as I work from home and there will be no commuting involved. Have been told it’ll be daily for 5 weeks, but guess I have to wait for the review to confirm. I live just down the A3 in Cobham, so hope the journey won’t prove too exhausting and that I won’t have to rely on my mother driving me, as the stress levels would decidedly increase in those circumstances!
Does anyone have any advice as to what time of day the car park isn’t a nightmare?
I’ve just finished my rads at Guildford and you will be in good hands - everyone was very kind and out of the 3 weeks only waited more than 10 mins or so once. Often took longer to get dressed again than the wait or treatment!
I found the best time to park was mid / late morning - occasionally needed to wait for a space but not often. It’s also walkable from Tesco car park. Also did the M25 / A3 journey and didn’t have a problem (although I think I was incredibly lucky!)
Do try the Fountain Centre upstairs, it’s a welcome haven. I had reflexology each week which I found very relaxing and I’m sure helped me relax enough to get at least some sleep at a time when it was almost impossible.
Hi girls,
Gosh the car park!!! Yes, not the easiest place in the world. I found that sometimes my husband is still queueing for a space when my treatment is finished and I am back out. We have managed to park there several times while I have been having rads but never when I was having chemo or bloods taken.
Debs, I think you will be fine with rads. The worst thing for me is the journey. A 60 mile round trip on the M25 and we often have to come off before Guildford depending on the traffic. Although I am not driving that is what I find so tiring. Otherwise I feel fine, a little pink but no real soreness and I only have 4 left to go.
Love to you all,
Jane xx
Thanks Jane & Helen, its really good to hear the re-assurance on both fronts. I have to say the only moments when I’ve felt like losing my cool around this whole experience has been the car parking, as I’ve found everyone else extraordinarily kind and supportive.
This forum has been rather scary (not the people, more the experiences). Nevertheless, its already been a mine of information and I know I will dip in & out of constantly. There’s nothing like being able to get advice from people who’ve been there.
Hi Debs I had a appointment today at Guildford St Lukes Centre for the scan to line me up ready for rads starting in 2 weeks time I have marker pen marks which I can wash off now plus 3 green pin prick tattoos which are perminant yes parking is a nightmare did you get your yellow ticket to help with the parking expence but it can only be used arond the back next to the radiotherapy department.
I am having 13 rads over 5 weeks 3 aweek then 2 and so on has anyone else had this? apparently If you are under Dr Neil he preferes alternate days or more! Good luck with it all.
Thanks for the reply and the encouragement. I’m looking forward to the tattoos … I realise they will only be dots, but they’ll be my first! ;o) I don’t know anything about the yellow ticket, so I will find out when I’m in for my review in a couple of weeks.
I’m still nervous, but … hey, its not like I’m alone in that.
I must say that I do like the idea of the Fountain Centre (as recommended by Helen) and will try to arrange for some treatment there. I already get aromatherapy massages from a friend, so think that reflexology could be just the thing.
Hi Girls!
Please help. I am eating too much chocolate! It should be just a square a day but whenever I walk past easter eggs or my secret stache of Green and Blacks I hear voices calling me…eat me…eat me. I have next appointment with surgeon coming up next week when I know he will confirm that I need a double mastectomy and the wheels will be set in motion. I know I want it ASAP to get it all over and done with but am getting more nervous every day. I know also that it means being referred to a new team who do the reconstruction I want at the same time. Well I suppose its better than hitting the bottle but Im going to put all the weight I lost back on. Any advice? I know, lose the secret stache?