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.
Susu you appear to be getting some good advice on hee so long may it continue
I had 30 sessions of tomo radiotherapy, and organised my session for around 5-5;30 every day .. looking back I am glad i did this as although there were two of these highly specialised machines at Addenbrookes they have a habbit of reaking down. It did not happen all the time, sometime i was in and out withing 45 minutes, my sessions took 20 mins (10 for the planning scanss then 10 for the treatment) roughly.
So just be prepared that sometimes the timings do not got to plan, the worst wait i had was 3 hours, but the radio therapy godesses stayed late until every one was d]seen that day ... they are truely wonderful people
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.
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 .
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!
