Radiotherapy starting next week. I asked about three weeks ago for early appointments. So was dissapointed when told first day was 12.00. Tried to find out when my others are and told to ring this week and they might know. Rang yesterday and again today. Finally someone got back to me and said that on each monday when i arrive i will be given a provsional appointment schedule for that week, but that could change at any time and each days appointment would not be confrimed until the day before, and even then might run late on the day.
Ok, I am retired. Have told the court not to expect me at all this month and have no real commitments, but the hospital do not know that. Or is it because of my age?? do they just assume that pensioners are hung up behind the door??
how on earth do people trying to work or with young families cope with this lack of scheduling??
Before I started I had a complete list of all my appointment times. They did vary, but I asked for midday appointments to avoid the rush hour(I had a 3 hour round trip into London daily) and they were reasonably accomodating.
I was given all my 15 appointment times at my planning appointment and as my onc had asked me what sort of times I would like when when I saw her and she put that on the form that went to the radiotherapy department they were all around the same time each day. They gave me a print out with all the times on it. Sorry but yours sounds a bit disorganised oal.
That’s not good OAL things certainly seem to have changed since I had rads just over 3 years ago or maybe it’s the hospitals that differ.I was asked if I wanted morning or afternoon appointments I asked for morning and was given a list of all my dates and appointment times before I started,and all my times were between 10.00 and 11.00.I did have a couple of days when I had to change to an evening because of work being done on the machines.
I was asked at rads planning what times I would prefer and asked for early mornings. Was then given my list of appts before I left. One appt for half nine all the rest after 4.00pm most after half five!!! Don’t really know why thy bothered to ask! But at least I knew in advance. Must say actually only got into one appt on time all the rest had to wait at least an hour!
Same here I asked for morn got afternoon but for me I found it better as I cld come home have dinner then just rest rather than morn when might have to come home rush about doing stuff but then also I had snow here so they delayed sum and machine broke down so was never on time
I’d have found it difficult to plan day without appt times in advance. I was given my 3 week schedule at my planning appointment & asked if OK. Suited me fine as late pm for first 2 weeks (worked full-time; went for my session on way home) then lunch-time for the third. I arranged to go part-time in week 3 mainly to avoid tiredness which thankfully it did (although did feel a little tired during 2 weeks of cooking after rads completed).
They did change my times once by all of 5 minutes!
To be quite honest I never got in on time so take a good book; drink a lot of water to keep well hydrated this will help to reduce any tiredness & see how you go. If you feel knackered have a nap.
Hope all goes well for you & anyone else about to start your rads.
It is difficult for the unit doing the planning - I had a course of 35 rads at a place where there are 2 machines. The first three weeks or so were already booked out with people on long courses of rads, so it’s only when they dropped out that preferential times were available. They did their best to accommodate me, but if the times are already filled there isn’t much they can do.
Hi OAL, I have had 2 sessions now. The first was 4pm but all my others are scheduled at lunch time between 12 and 1pm. I did ask for early mornings but there were no apps left so not to worry.
I also got a schedule for all the appointments printed out and given to me. Yesterday they were 45mins behind schedule which I found was tiring , but they did say it was unusual.
Not sure why but I have been very cold after despite the heat being about 25 each day!!! My boob is also very pink already.
Hey Ho onwards and upwards. Sorry you seem to be treated in a different way. I can’t find anything wrong to say about my hospital. I feel very lucky.
Keep Smiling x
At the rads planning meeting just before FEC5 I asked for early mornings, reminding them that I live just around the corner so could be there first thing, and that I needed start of the day appts because I work, and they said “yes, that’s fine, your first appointment is 9.30.” On that day I was given a list of appointment times, most of which were in the middle of the day - no use at all! I’m afraid I spat my dummy out (in as polite a way as possible, expressing my frustration at the times rather than saying anything about them being inefficient!) and a very nice chap came back with a revised schedule. there are a couple of middle of the day appointments because there are also some where the doctor wants to see me too, and that fits in with the doc clinics and appointments, but the rest were moved to no later than 10am as requested, which makes life much easier. I had one phone call rearranging the following day’s appointment but that was fine as they wanted to make it earlier rather than later and that worked very well for me.
As for the appointments themselves, I’ve brought my books but except for the one day where I got stuck in the car park I haven’t even had time to open the first page before I was called in. In and out within 15 minutes most days, it takes longer to get into the car park than to have treatment. And the people have been very lovely, and treated me with respect and what dignity you can have when you’re lying there with one boob hanging out.
At Christie hospital they ask you in advance at the rads planning appointment what sort of times you would prefer for your treatment, and my appointment times were all around that time, plus or minus half an hour. BUT they don’t let you know until the day before exactly what time the next treatment will be. AND they ran late 12 out of 15 treatments, due to machine breakdowns, slow treatments, etc. Sometimes I had to wait 1 1/2 hours for 5 mins treatment. It drove me crackers and made a stressful situation so much worse. Just as well I was signed off sick from work otherwise it would have been a nightmare.
I can’t see it being because of your age it sounds like thats the way your hospital do things with mine I had all my dates on a sheet given to me at my planning appointment, thats when I asked if I could possibly have early morning ones, I dont drive so OH took me & that meant he could get back at a reasonable time & not miss too much of his work day, they gave me all early morning 8.30 - 8.45 with just two that were around 11.00 which they couldn’t accomidate which they were very sorry about, but I was so surprised they resceduled all the other 13 for me to the times we’d prefer. All hospitals are different.
hi oal , all my rad apps were 4 pm and after up to 6 pm think i actuslly had 2 midday but i was only told my apps day by day was a bit of pain but then i am not at work so day is my own x
Agree completely with this bad way of making appts - I did have mine set for each week at the start but that meant that I could not plan ahead at all for that week - so much for quality of life that Onc keeps talking about… but they were very good at trying to rearrange if I asked them to.
Hiya,
I’ve just finished 19 rads @ SGH and was given schedule on 1st morning for them all. I hadn’t asked for anything special before and got most before 10 AM. I then asked for as late as poss on a Thursday and those were changed.
I’d ask for a schedule for the entire time and there should be no reason why they can’t give it to you. Maintenance has to be planned well in advance and if a machine goes down they should be able to notify you or fit you in on another.
Good Luck and I hope you get sorted. (keep slapping on the cream!!)
OAL I am astounded at your hospital’s appointment system, it sounds like utter chaos!
At Exeter we got a list with all our appointments in advance of treatment starting and I was always given 2 day’s notice when there was a change. They also made sure that the appointments were scheduled so that I could take advantage of a subsidised travel service as I live 80 miles from the hospital.
Once again I am left feeling incredibly grateful that I had my treatment where I did, as this is yet another example of what a lottery the NHS is!
I was given all of my 30 appointment times on my first visit to the rads department. They were mostly in the middle of the day with some exceptions where the machine was being serviced. They gave me 4-5 pm appointments on those days. I said I would just not be able to come on those days so they changed the appointments to middle of the day.
I did make a couple of changes to enable me to go to The Reading Lunches - one early AM and the other late PM.
I just can’t imagine what it would be like not knowing in advance and trying to plan your life around the uncertainty. Can you make any difference if you go through PALS?
Good Luck with trying. x
Am afraid your appointment system appears to be the exception rather than the rule! Have just finished rads got all 20 appts on a sheet at planning asked for early mornings got them all at 8.48 except one and was only late once! Well done Jimmys!
Hi, OAL, I must say they seem very disorganised at your hospital, especially at a very stressful time. When I had my rads at Addenbrookes, in 2007, they asked me at my planning session what time of day I preferred. I told them mornings, and I received a letter two days later, listing the dates and times of my 15 sessions, 12 of which were in the morning. I never had to wait long for my treatment, either. I really cannot fault Addenbrookes for the care I received. I hope your hospital manage to get their act together for your sake. Take care xx
