starting radiotherapy may 2011 Queen Elizabeth QE Birmingham

hi i have just finished 8 chemo at walsall manor hospital and am scheduled for 20 radiotherapy sessions at the QE in Birmingham.

just thought id start this to see if there were others out there at the same time?

also if anyone has been through rads at QE recently, if you have any tips/advice re having the treatment itself and/or the practicalities/logistics of going for rads at the QE it would be much appreciated.

i am waiting for planning/tattoo appoitment to come through the post at the moment.

claire

Hello Little Angel
I had rads at QE last Dec (finished 23rd Dec). The team there are absolutely lovely every time I went there was a guy there called Ben who is wonderful, he treats every one with such dignity. It is a bit strange lying on this table being undressed by a group of strangers and then being pulled and pushed into position!!!
The machine is noisy but it doesn’t hurt, I used to lie back close my eyes and just let it happen. I pretended I was on a hot beach!! Don’t talk when they are getting you into position the quieter and stiller (is that a word??) you are the quicker the treatment is over with.
The worst bit really is travelling there every day but the train station is a ten minute walk from the cancer unit and they give you a parking ticket should you drive.
Don’t wear a bra and as it will probably be warm loose clothing. I used to put a cold compress on the area afterwards just to try to take some of the heat out of it.
For me I suffered from awful fatigue after rads and even now am tired but just listen to your body and do what you need to do.
If you need help with travelling costs I think Macmillan can help.
Well I hope some of this is useful to you and good luck
Fluffy xx

Hi, I’m not starting mine until June, but I had rads there before as well. I’ll second what Fluffy said, although I don’t think I know Ben, but the people who treated me before were really good. You’ll have to strip off your top, so dress accordingly. For half of my previous treatment I had appointments after work, so I wore a bra and everything else, but if you wear a skirt or trousers and tops, it’s not too much trouble. You should get a car park pass if you are going to drive.

The drill was then that you had an assigned top with poppers at the shoulders to wear, took your own top/s off and put this on, own clothes in a wire basket and then had a wait which was usually fairly short and was in a separate room from the main Oncology waiting room. I think you put your appointment card in a holder so they know you are there–something like that. (I think radiology will stay in the Old QE building for a while still because of all the shielding.) The radiologists will tell you how to position yourself and then set up the machine–getting it positioned just right takes longer than the actual treatment. It’s not painful at all, but some people dislike having to lie still, possibly in an awkward position, with heavy machinery overhead. Follow the advice about washing, exposing the area to air each day (at least it’s a warmer time of year), and so forth. Expect to be very tired by the time you get to the end and for a while afterwards.

Aquaeous cream for washing and as a moisturiser, bath/shower water not too hot, don’t put *anything* on your upper body without checking that it’s ok. If you do get reddening or soreness, you can usually use hydrocortisone cream. You might prefer a really soft bra or support vest, the sort people often get after surgery. Plenty to drink.

Rads may well be more tiring after chemo; I’ll find out soon after you do, but my previous experience suggests the SEs are easier than chemo, aside from the tiredness towards the end–but it’s a shorter period of time.

We’ll have to compare our appointment times later on and see if we overlap, or near enough to have a coffee or something.

Cheryl

thanks for responding both - yes cheryl may see you there.

i am a bit worried cos i have gone back to using my sure roll on deodorant - better stop immediately - any suggested alternatives?? - i dont want to smell???

claire

got first appointment through for CT scan radiology at QE for 16th may - i assume that is the planning appointment that people talk about?? is that the one where i will be measured up and tattood?

is there anything i need to know about what they do at the initial appointment? how long am i likely to be there?

and how long after this appointment will the daily treatment be likely to begin - one week, two weeks or more?

claire

That’s right, they set everything up at this appointment, and they will probably explain the procedures for your regular appointments then. The scanning appointment will probably take longer than the rest. Personally, I found that the tattoo really hurt, so you might want some painkillers to take afterwards. But some people are ok with it. I don’t remember exactly how long it took, just that it seemed to be quite a time. Maybe a couple of hours altogether? But it might have seemed longer than it was. I think I started the next week; this time I’ll have a week away at least.

They may give your the first appointment time or times they have free, and then try to give you a time you prefer–they will do this as much as possible, especially if you need before or after work or need travel time.

It’s probably a good idea to take in questions and write down the procedures–I wish I had last time, because I was nervous and forgot everything at the first regular appointment.

Don’t worry about your deodorant until you get to the scan, at least, because it will all have washed off by then. I can’t remember which threads have suggestions for deodorants that you can use through rads, or you could just wash/wipe under your arms through the day. I think there are shields you can stick to your clothing, but I’m not sure how good they are during rads. It’s more of a problem in warm weather, obviously. But there are suggestions somewhere for deodorant you can use throughout–I think if you ask at a chemists or at a health food shop, they can probably tell you.

Cheryl

thanks cheryl for your info and advice

claire

I hope it’s helpful and that it’s still has friendly and efficient as I remember!

Cheryl

two things popped to mind

should i start using aqueous cram /aloe gel now, prior to rads?

when i go to rads every day, will i have the same allocated time slot every day? and will i know the tim that i need to attend in advance so that i can plan lifts etc in advance?

claire

You can use the cream now, but you can also use anything you would normally use right up to the scan appointment. The better condition your skin is in, the better it will come through; the main reason for the aquaeous is that it’s relatively cheap and doesn’t have any metallic salts or other ingredients that might burn your skin or make things less effective.

Talk to them about times, or they may ask you. If you need a particular time because of lifts, they will do their best, although as with anything in hospitals, they can’t always guarantee things absolutely. You’ll probably get at least a week at a time if it’s mainly a question of planning. But if there is a time of day which is really best for you, let them know and they will try to give you roughly that time. If someone is going to bring you and stay with you, you should get a car park pass for the whole treatment. (It’s just a piece of paper, so remember to bring it every time.)

I had to ask for a time after work, so it had to include the time for me to drive across town at home from school time. And then I had to drive home through the rush hour and a load of construction traffic, which was always terrible. At least the construction traffic from the new hospital has finished, and I don’t think the roadworks for the new road is causing too much traffic near the hospital.

I hope it all goes well for you.

Cheryl

Hi Claire
I was told not to use anything prior to treatment and no deodrant or body cream to be used on the day, just shower before going.
At your planning appointment they will tell you everything and for the first few appoints will try to get you the time you want. At the end of each week they then give you the appoints for the following week but if you can’t make the time given they will try to accomodate as much as possible.
Like Cheryl has said take your questions with you but if the procedure is the same they will explain everything before they scan and tattoo.
Re deodrants you can get some in boots or holland and barratt that have no nasties in them and if you do use just put under the arm not having rads.
Try not to worry you will be fine having this part of your treatment…
Take care Fluffy xx

thanks both - i am so worried about getting to and fro - i am on my own with my kids and friends have offered to help out with lifts but i dont want to mess people around and want to give them notice if i can cos some people may even take time off work to take me so i am relieved to know the hospital will give me some notice of times and that i may be able to suggest a preferred time.

i think i may ask for late morning to avoid rush hours etc as will be travelling from aldridge by car or blake street little aston if on the train

claire

Hi Claire, I’m not at the same hospital though I’m also in the Midlands. I’ve just started but feeling good and perfectly up to getting myself to and fro at the moment. Lif and various others on here have recommended 99.9% Aloe Vera which I’m using as well as aqueous and it feels very soothing.

Hi Claire I finished 15 sessions just over a week ago at Wolverhampton which is about 15 miles from home. I drove myself every day apart from the last 3 sessions when I was offered a lift, My advise would be to rest as much as you can and don’t overdo things just because you feel ok. Around the beginning of week 2 you may feel that your enegy levels aren’t quite as they were, so a good nights sleep is a must and drink loads of water. The worst part is when it’s all over and you have hot itchy skin but just keep using the cream and go bra less whenever you can and it does get better.
Love Fran

Hi everyone,

i have had my appt come to attend QE on 25th may for initial appointment prior to starting rads,

please, please tell me the ses arent as bad as tax, I dont think i can face that fatigue again,

some-one help me out here please,

what can i expect, I am really concerned about it

many thanks for any info: love liz xxxx

I think avoiding the morning and evening traffic is a very good idea. I intend to do the same, even though I’m near the QE.

Cheryl

Hi Liz, I’m 5 of 20 into my rads and not feeling and SEs so far. Plastering on the aloe vera gel, drinking fluids, also taking beta carotene which was recommended to me. No idea whether its helping but I feel fine. I think maybe for the first time I can possibly detect the line where my rads area is, but no obvious redness or soreness as yet and I feel on good form. It also feels like it is passing quickly x

Liz, in my experience rads are nothing like as bad as chemo. I know a few people have bad experiences, but this is a very good unit and they were very kind when I had rads on the other side two years ago. You should get information about the process and how to care for yourself, but most of it has been repeated here.

It’s mostly common sense and being as healthy as you can in the run-up. If you have dry skin after your other treatment, you might want to use some sort of body lotion in the meantime–anything you normally like. For the setting up part, the drill is similar to a mammogram or other xrays–nothing perfumed, no deodorant, no talc, nothing that has metallic salts in it.

While treatment is going on, aquaeous cream is generally recommended as safe, but there may be some other products. The important thing is to avoid those metallic salts, as they can burn your skin. You can use what you normally do on your face and hair (hair, what’s that?) and probably on the lower part of your body, as they won’t get any radiation. I always washed my face & hair first, so that anything that got onto the radiation area would be washed away afterwards. You can use the aquaeous cream or something like simple soap for washing, but the aquaeous does have a moisturising effect. You have to avoid washing in water that is too hot in that area, or it’s like what happens after you get a burn, and will go red and sore. I found that out the hard way, but it was ok soon after.

No deodorant on that side, several recommendations for safe deodorants on the other side. The bit about trying to expose that boob, and perhaps that armpit, to air every day seems to help. If you do get sore they may recommend hydrocortisone cream.

You will get tired, but it’s nothing like the effects of chemo, in my experience. Drink plenty of fluids, eat fruit and veg (at least this is the right time of the year for that), and rest when you need to. Be careful of the sun, which you’d probably do this summer anyhow. You have to give it a few days to a week (I’ll have to check that myself) after the end before resuming normal products, certainly until any pinkness goes away. I never had anything worse that the kind of pinkness from the sun that fades by morning, with the exception of losing a small patch of underarm skin a couple of days after it finished–the last few treatments get a wider area and it was too cold to sit around topless by then. I put hydrocortisone on it which took care of everything in a couple of days.

I won’t actually start until June because of a holiday, but perhaps we will overlap at some stage. It would be nice to say hello.

Cheryl

Claire, I started rads this week, in Southampton, and so far, so good…but then, I’ve only had two! I’m using aloe vera gel, but it must be the 99.9% stuff - I double checked with the radiotherapist, who told me it was absolutely the best thing to use, unless you have an actual aloe vera plant to squeeze, which would be even better. Southampton dole out the aqueous cream too, but the aloe vera seems to be even better… (but the hospitals prob. don’t get donations of it from the pharmaceutical companies…).

I can use deodorant under my other armpit, no problem, and am using Simple shower cream, then slathering on the aloe vera in the morning, before treatment at lunchtime. Then slathering it on again when I get home. The radiotherapist said it didn’t matter what time of day I moisturised with it, as long as I did it at least twice daily.

I’ve been warned that I may get sore patches, as I have very fair skin, but I’m keeping everything crossed that I avoid it - particularly after the fun and games I had finding a dressing that didn’t weld to my skin when I had the PICC line in!! I’ll let you know how I get on… but it’s a piece of cake compared to chemo, honestly - nothing to it.

Sophie xx

Hi

I completed my RT in March; I used “crystal” deoderant on both armpits the whole time as it doesn’t have any metals in it.

I slapped the aqueous on morning and again as soon as got home from work via the hospital.

I got quite a sore nipple during second week and was supplied with gel patches which worked a treat.

The week after treatment you continue to cook & I peeled. My health centre prescribed me a cream called Diprobase which seemed to be a little more effective than aqueous. Now nearly 7 weeks since & nipp. is still very dry so I still use aqueous as a soap substitute and use the diprobase cream as a moisturiser.

Hope all is going well with your RT; and not feeling too tired. Rest when you need it; I managed to work through mainly as I work only a couple of miles from the hospital in Oxford. Got a little tired in week 3 mainly I think as appointments lunch-time instead of late afternoon as weeks 1 & 2.so I had more day-time to get through before time for bed.

I also used the 99.9% aloe vera & when I did I basically left my boob exposed to allow the air to it.

Take care
Lynne