Message for Dilys, Lucy, Lollie, Dahlia, Candy

Hi Lucy

I was really quite worried about rads and asked my oncologist several times if it was absolutely necessary! I thought when I had a mastectomy that I wouldn’t need rads but quite obviously I was wrong. Well my oncologist persuaded me I needed radiotherapy so I went with it but I was not looking forward to it. I wasn’t looking forward to it for several reasons, soreness of the skin, problems with the reconstruction, travelling to and from the hospital (luckily I could drive though and only total one and a half hours), feeling tired and sickness and tummy upset.

I think though I worried unnecessarily as the travelling was fine and the 5 weeks went by so quickly. My skin got a bit sore but not too bad, I was a bit tired and still feel tired but I think that is from the whole deal of chemo and rads. As for sickness and getting the trots, I didn’t have any sickness but had a bit of a delicate tummy. I probably wouldn’t have put it down to the radiotherapy except that I have a friend that suffered from diarrhoea on radiotherapy. She asked the radiotherapy staff at the hospital and they told her this was not a side effect though! Overall it was a lot easier than I thought it would be.

As to you travelling on the tube, I don’t think it will be a problem if you are like me as I went out quite a bit after my treatments and never had a problem. I had my rads in Brighton so I thought while I was there I would sometimes make it a day out. I had an 8 week wait for rads, not sure if there is a wait at your hospital. My oncologist told me I could go to London with no wait but I decided against it as I didn’t want all the travelling by train and tube.

Are you just having radiotherapy to the chest wall?

Anything else I can help with just let me know.

Love Lollie x

HI Lollie

Thanks for the information, I am having it over the implant boob I did ask the onc registrar to physically show me where the radiation would go it is in a sqaure over the implant…I should have gone for my planning on the 25th July and then started treatment on the 2nd August but they have to re shuffle me due to the delayed chemo, It only took 1 week to get the appointment through originally and they said that i would just have to have 3 weeks now they have possibly changed it to 5 but wont know til I see the guy’s in London as I have my chemo through them at the local hospital to me…mum is going to travel with me but I dont think she is looking forward to it…when I saw my onc registrar she said that the trots was a side effect…I think they all say different things…

I dont understand why some need rads and others don’t, I am glad it is nothing like chemo or so they say…again with chemo I wonder if it makes me ill because they dont make it at the hospital where I have it they travel it with them from London and I think it is made a few day’s in advance…

thanks again
Love
Lucy XXXX

Hi Lollie, Lucy, Dilys

Thanks so much Lollie for the good wishes and words of encouragement, it really is great to know you are all there for me.

I hope for you and Lucy that I am wrong about the rain and that we get a lovely summer very soon for you both.

Lucy I was very interested to read your theory about the the chemo making you ill because it isn’t prepared in the same hospital. Have you ever asked
anybody about that? I have been told that where I am going they don’t make the dose up until after they have initially seen you. You then have to wait a couple of hours whilst they do it.

Dilys - sorry I put the mockers on Lewis Hamilton didn’t I?

lots of love
Pauline
xxx

Hi Pauline,

No I havnt asked, but when I went to London as a one off, It was made up the same day and I wasnt ill at all. I also wonder if it is who administers it too and how quickly they do it.

I don’t think i will be on here for a few day’s as I have been getting a bit down with it all really and just want a rest from it, I pick myself up then I look at another post and I find doom and gloom…I just want to wish you best wishes for Tuesday, I hope all goes well for you and that you are like Dilys sick and Symptom free…

Love as always Lucy XXXXXX

Urgh - it’s Monday

Morning all

Weekend has flown by again already, boo hoo.

Dilys, glad to hear you’re still feeling good. When I had my first FEC I just kept thinking “ok, so when so I start to feel ill?” and of course it never happened so I carried on doing the garden, painting the fence etc. Similar with Taxoterre.

Welcome back Pauline and glad to note we had some sun this weekend - was it from Butlin’s???

Lucy - completely understand you wanting to be “offline” for a few days, take it easy and we’ll be thinking of you as you approach the finishing line. I felt my last one to be a bit of an anti climax - the London to Brighton finishing line was much more exhilarating!!!

I spent hours shuffling along on my bottom yesterday weeding our block paving so I’m all stiff today - at least I hope it’s that and not the Arimidex which has a reputation for “doing things” to your joints. Anyway, I had my reward later in the day at Twickenham - saw GENESIS and had a brilliant time rocking like a good 'un, ab fab. I didn’t want them to leave stage, I’d have rocked all night quite happily. Had good seats in the pitch but when it rained we got wet but not too badly and we didn’t need the wet seats cos we were all on our feet from the moment Phil Collins appeared.

You wouldn’t think there could ever be such a Sunday night traffic jam but there was, home by 1 and pooped today!

Ah well, back to work … have a good day.

HI Dhalia

thanks for the good wishes for Friday…I live 10 mins from twickenham rugby ground by car and the traffic is always horrendous every time there is an event on there, how funny Dilys at Hampton Court you at twickenham shame it didnt all coinside on the same day we could have met in the middle…

Love
Lucy
X

Hi Everyone

Thanks very much for your good wishes for tomorrow. Had a marathon today at the hospital, some problem with getting the results from my blood test, but we got there in the end and all is fine. Can’t wait for tomorrow!!!

Lucy, I understand what you mean about some of the posts you read and hope you feel better after a rest from here. You have been a real inspiration to Dilys and I and I am only sorry you have had such a rough time. All the best for Friday and please know we are here and thinking of you.

Dahlia, you can’t beat a live concert can you? I am glad you had a good time and hope those aches go away.

Dilys how are you today, a bit worried we haven’t heard from you?

lots of love and a special hug for Lucy.

Pauline
xxxx

Hi everyone

Pauline I will be thinking about you today am hoping all goes well for you. I am still ok - just wrote a long post on Sunday which vanished into thin air so I got a bit disheartened! And was busy yesterday doing boring things lke turnng in my Oyster card, going to the bank etc etc. I am still fine though now getting the odd mouth ulcer, and did anyone else find themselves up with stomach cramps and sight diarrhoea in the wee small ours? Decided to stay up and read in the end, so a bit tired because of that really. But nothing too dreadful so far. I have to go to the hospital with my usband this afternoon so may drop in on the Chemo Unit to see what they say!

Pauline you didn’t put the mockers on Hamilton! He still did brilliantly, didn’t he? And Dahlia where does all your energy come from? You are amazing.

Not sure about that chemo made elsewhere theory. I was told that next time I can get my bloods done the day before so they can make it up ready, rather than be hanging about for ages. They said this was lucky as it has a shelf life of a few days, whereas some people had stuff that had ony a four hour shelf life so would always be hanging about waiting. That was the really boring bit for me - the waiting on a saline drip!

Lucy - hope you are hanging on in there ok. You are so nearly through the worst bit. We are all with you.

Much love to all and a big hug to Pauilne for today

Dilys