Hi. I have had the same op and will be starting radiotherapy in a couple of weeks. I would love to compare notes once we start . All the best and let's hope neither of us have too many side effects. xx
I would love to compare notes with you as we seem to be in the same boat on this, although I have a feeling that you may be several weeks ahead of me, treatment wise.
My initial oncology appointment is not until tomorrow and then I'm guessing I have to wait a couple for weeks for the planning session and then another two to actually start the treatment. Why does everything always take at least two weeks?!
Anyway, hoping to find out a bit more on the timings tomorrow...
Fingers crossed for both of us and please do keep in touch.
I'm only about a week ahead of you as my initial oncology appointment was last week. I have another one tomorrow for preparing me for the radiotherapy which I think will start in a couple of weeks. I have chosen to go on a trial where you either get 3 weeks or 4 and a 1/2 weeks. The trial is called IMPORT HIGH. I decided to do the trial as if it wasn't for previous trials I wouldn't be where I am now. I will certainly keep up to date with you and I hioe all goes well xxx
Thanks very much for that, I had been thinking about trials too so to hear that you have chosen to do so is very reassuring. I agree that any help we can be for future sufferers is all good and, on a much more selfish note, it also means that we ourselves are more closely monitored so it's a win win situation as far as I can see.
Will update you after my apointment this afternoon but good luck with your planning tomorrow in the meantime.
As promised, a quick update after my Oncology appointment this afternoon.
Saw the registrar who explained the whole process etc before I signed the consent form.
Was not given a choice of number of sessions, it will be the standard 15 x 3. I did question this but was told they only do it this way as any other combination has not been proved to be any more beneficial!
I asked about any trials but was told that in my area there were no suitable ones where I would fit the criteria so unfortunately I won't be joining you on that partciular route.
Again, was not offered a choice for the hormone therapy and I was given a perscription for the first months dose, which I will start once the radiotherapy has been completed.
No dates for anything yet, but will be sent a schedule either later this week or next for the planning, bone scan and daily sessions which, as you said, will probably start a couple of weeks after the planning date.
So, some progress today and I look forward (if that's the right term) to getting the schedule soon.
Hi, I have just had my 5th session of radiotherapy, 20 to go!
I am driving a round trip of 30 miles to and from work, working from 8-1every week day, seem to be managing ok, so far. I have been making sure to eat healthly, multigrain bread, boiled eggs, cheese, loving angel delight! My husband does the driving to and from the hospital, so that is quite relaxing,
I booked my appointments for 3pm every afternoon, gives me time to get home from work, get changed and have a coffee before the 50 mins drive to the hospital, I am sure we will get bored over the next few weeks goimg back and fore.
Good to hear from you and I delighted that you are finding things are going OK, that's great news.
Although I have family & friends around, I still find it quite lonely doing all this by myself so you are very lucky to have a lovely hubby to do the driving and to chat to along the way.
Having said that, I actually work very near the hospital so I can choose either a 20 min walk or a 5 min drive, which is handy, and then I can come straight home afterwards. I have asked for my sessions to be between 4pm & 5pm so I'll see how that goes.
As one of side effects can be a feeling of sunburn, I thought I'd prempt it today by sitting out in the garden with a good book for a couple of hours. I probably overdid it a tad and am now a bit pink but, what the hell, it was just lovely to be out in the sunshine!
Take care and hope things continue as well as they've started for you.
radiotherapist advised me to not get the sun anywhere near the treated area for the whole summer and if I did wear a top exposing any of the area, to use factor 50! so watch your skin!
Thanks for the kind warning and I imagine l'll be told the same thing but thought I'd sneak some sun in now before the treatment starts!
Not very wise maybe but it seems to have helped all the scars and I have since slapped on the E45 so shoud be ok. Having spent the last few months shut away in the house, I just couldn't resist it!
Others have also warned not to use E45 once you start the radiotherapy as the skin is so sensitive and cause a reaction, sorry to scold, but better being aware!! I would love a bit of sun on my skin too, so know how you feel xxx
Please don't worry about scolding (as you put it) I honestly really appreciate all your help!
That's very interesting though because I asked if the hospital gave out any creams or lotions with the treatment and was told that they don't but she then recommended E45 to me.
Sorry to bug you but do you mind me asking what you use instead?
My oncologist gave me a prescription for diprobase cream. I can use it in the morning before I go as long as it's absorbed :-) number five done and starting to look a little pink .
My oncologist gave me a prescription for diprobase cream. I can use it in the morning before I go as long as it's absorbed :-) number five done and starting to look a little pink .
like Daisyboo, I was given Diprobase cream by the radiotherapy team, use twice a day to keep the skin moisturised, I had dose 6 today and can't see much difference yet, nice to compare notes and advice, please all continue as every little helps!
Another week over for you then, enjoy your two zap free days!
Sorry, but a bit of a rant coming up now...
My appointments came through today and the 15 x 3 sessions are being done at a totally different hospital to where I had been going and is almost 40 miles away from home and over 50 miles away from work!! The oncologist didn't mention this other hospital at all on Monday and we even discussed how convenient it was that I work so close to the hospital where we had our meeting. I called them but, after consulting with colleagues, had a call back to say that they could not change me back to the original hospital as it was fully booked up and I would have to go to this other place after all.
To add insult to injury, they had also booked me in for 20 sessions instead of 15 but, having doubled checked, admitted that it was their mistake and they will be sending me a revised schedule shortly!
As you can imagine, I am not happy about all this and am now going have to rethink whether I can work at all whilst having the treatment. I would like to try but my work is in the opposite direction to this "new" hospital so the daily round trip will be pretty horrendous, never mind if any side effects kick in as well.
I really think someone could have warned me that this might have been a possibility.
Still, my first session is not until 13th May so I have just under a month to calm down (!) and decide what to do about work in the meantime. I understand that they are changing some poor souls over from one hospital to the other mid-treatment which would be much worse for them so I guess I can count myself lucky in a way?
Apologies, rant over now!
Take care and I hope next weeks goes as well for you.
Gosh, that is terrible news, no wonder you are having a rant. I really sympathise with you, but looks like there is not a lot you can do.
Hopefully you can get your head round these changes before your sessions start? Have a restful weekend and think positive. Shirley x
For some reason your last post didn't come through until after I had sent my rant so sorry to hear that your skin is starting to react now and I hope it doesn't get too uncomfortable for you.
Thank you for bearing the brunt of my ranting....as you say, there isn't a great deal I can do about it, it is what it is.
