What you wish you had known before starting Radiotherapy?

So here's a very practical hint for anyone about to undertake Radiotherapy to the Prostate:

Plan your return journey home to ensure you know where public toilets are located - MacDonalds, Costa Coffee etc because as your radiotherapy progresses so does your need for the toilet!! (trust me I know ).

Whatever your cancer - I wish you well on your personal Radiotherapy journey.

Best wishes - Brian.

I wish I had known

• that it was completely painless
• that machines can breakdown while you are on the table and it doesn’t matter
• the staff are amazing
• to take a 4 pint empty milk bottle in the car
• How simple it was to get into a routine where I was empty of solids and gas

One thing to be aware of. In my experience, treatments are rarely on time so give yourself plenty of time.  There are usually delays for various reasons. If your particular treatment allows it, take snacks and drinks and something to keep you occupied. My centre had a snack bar in the waiting area, so I always enjoyed a toasted tea cake and coffee while waiting. Driving is not advised as tiredness creeps up on you as time goes on. If on daily treatment, you tend to see many of the same people and the waiting area can be very upbeat and sociable. I hope all goes well for anyone waiting for treatment. Best wishes.

1. It's nowhere near as bad as you think it's going to be
2. It's painless
3. You get use to inserting strange objects in your rear end shortly before your procedure
4. If it wreaks havoc with your bladder movements they can give you medication to help
5. When the radiologist asks you how you are feeling they're not making idle conversation, they're checking the treatment is having unpleasant side effects.
6. When you arrive for your last day of treatment everyone will be smiling as they all know it's your last day
7. If you're driving arrive in good time as the car park is always full

Radiotherapy to different areas of the body may lead to different side effects. My radiotherapy was pelvic radiotherapy. 

When you have your consents appointment they do tell you the possible side effects but I didn't realise they would come on so quickly. The treatment itself is painless but I had side effects almost straight away.

They did mention that people tend to feel tired but I did not realise quite how tired I would feel. Although the treatment itself took less than 5 minutes I was normally at the hospital an hour before the appointment for the preparation and then there was often a bit of waiting around. I was away from home for around 4 hours a day and had 25 sessions. I also continued to have fatigue that lingered after treatment ended. The travelling tired me out more than I had anticipated. 

One thing that worried me was the thought of the tattoo dots. Before I had mine I was imagining all sorts. They were actually a drop of ink on my skin and then it was pricked with a tiny needle.

I also agree with Millibob- plan around where the toilets are -and also ask for a Can't Wait card from Macmillan.

And talk to your radiotherapists if you do get side effects as they can usually help you manage them. The same with Late Effects. 

Jane

Good morning 

my OH’s tips are:

Talk to the professionals even if you think it’s trivial.

He chose not to eat a dinner the night before ( he had 6 x 1 weekly) and this seemed to work better with the bowel prep. He ate a light meal of scrambled egg or something similar.  

if you feel tired rest as it’s hard to shift if you don’t listen to your body.  

best wishes to everyone 

Liz & OH xx

Well, here are my thoughts:

The treatments quickly become a daily routine.

Allotted times are often missed depending on how the previous peoples treatments have gone.  They may be later or on occasion early!  The early morning appointments are much less impacted. 

Machines do breakdown - it's not a problem if you miss a days treatment as it's added on at the end.

Plan your journey allowing for traffic / roadworks & most importantly to allow time to find a car parking slot (the most stressful part of treatment in my opinion).

Know where available toilets are for the journey home so if the need arises you know where to stop.  An easily accessible container for a discrete roadside stop is invaluable (even better if your rear car windows have a dark tint).

Having a daily treat after each treatment gives you something nice to look forward to.  Doesn't matter what it is as long as you enjoy it.

All the staff from receptionist to radiographers are brilliant / friendly.  They have seen it all before & will help every step of the way.

Best Wishes

Brian

As a recent recipient of pelvic IG / IM RT for prostate cancer, here are my thoughts…

• It’s quite similar to your MRI and CT scans but without contrast, probably a lot quicker and nowhere near as daunting as you imagine it’s going to be.
• If you are driving, check the car parking arrangements before starting. You may be eligible for free parking. There may also be queues.
• Also, double-check their bladder and bowel requirements before starting. Allow yourself plenty of time for this.
• Only drink water and decaf tea/coffee just before, certainly during and for a while after treatment. Should help reduce any urgency for a leak.
• It’s rare to be called through spot on time. Delays can and will happen, for various reasons.
• After the first couple of fractions you know what to do and it becomes quite routine.
• Everyone in the waiting room is in the same boat. It’s good to compare notes and find out their stories.
• Missing a day due to a machine not being available isn’t an issue. The treatment is cumulative so a fraction will be added on. No need to worry.
• Be prepared to have to empty the tank if there is a long delay. Don’t drink quite so much water before the next slot as you will retain some hydration from the first attempt.
• You may have an occasional ultrasound check to see how full your bladder actually is. That’s painless and quick.
• When you go through the radiologists will double-check you are who they are expecting.
• You will need to remove shoes, trousers and lower underwear enough so the positioning tattoos are visible. They provide paper as a cover for dignity.
• When you lie down the radiologists will position you, using your tattoos and their fixed laser markers. You don’t move yourself unless told to.
• Your feet may be placed in slots to stop movement and your head in a foam rubber support. It’s all quite comfortable.
• You do need to keep very still after being positioned.
• There’s no sensation of the RT being delivered at all, just some noise from the machine.
• My sessions were around 15 minutes long so I devised a memory game to take my mind of things. Travelling car journeys and walks in my mind, remembering sights along the way. It made the time in the tunnel go much quicker.
• Be prepared to see some very sick children. And adults. It broke my heart to see one young child being wheeled through, with lots of teddies on the bed.
• It’s good to have a walk or find somewhere to have a bite to eat before heading off home. You will be extremely well hydrated and will need to empty the tank. Maybe more than once…!
• It is useful to know where toilets are on the route home. And other viable emergency stopping places. 
• Carry wipes, spare pants and trousers in a backpack. You just might need them. Probably won’t, but better to have them than not have them!
• You are likely to get tired and lack energy. It’s normal and takes a while to improve.
• Expect some other side effects. Also normal. It’s a bonus if they don’t happen!
• The radiologists are lovely people and need chocolate. Buy them a box to say thank-you when you are finished!

Here goes:

1. There is nothing to be afraid of, it does not hurt.
2. I had a back pack and in it I had, wipes, my supply of enemas, latex gloves, Anulsol, hand sanitiser, lube, Sudoku book, pen, charged phone, spare boxers (just in case) and my water bottle.
3. Do a pre run before your appointment, check car park and allow plenty of time. Keep calm
4. Arrive an hour before you appointment
5. Keep hydrated
6. No alcohol, fibre or caffeine
7. Casual clothing, tracky bottoms, you keep on your boxers, socks and top.
8. Know what the side effects can be, bowel and urine issues - keep your RT team updated
9. Be polite - it gets you everywhere
10. Speak to fellow patients
11. I would promote taking your other half
12. I was able to drive there and back without issue
13. Have a wee before you leave the department

Not exhaustive but a start.

     13.a I took a case of Prosecco in for the last day and be ready to cry when you are done.

Hello, I have a few thoughts to share. I had pelvic radiotherapy for cervical cancer x 25 daily treatments with the weekend off. After a couple of weeks, I found I couldn't tell if my bladder was full or not. Sometimes I would feel as if I couldn't hold it much longer so they would put me in next only to find it was only 20% full - they can do an ultrasound before the treatment just to check. Other times I was correct and I was very full to the point where a couple of times I almost couldn't hold whilst on the treatment table. The staff are excellent at Eastbourne so patient and kind. 

What I did find out though was that my bladder was so full at the planning session and you need the same fullness for the treatment, it was right on the edge of being too full so I found it extremely difficult to get it right as it was on the point of not being able to hold it. So ask the planning radiographer to be mindful of that!

Also, it can cause great discomfort when passing stools, I actually found it excruciatingly painful from a couple of weeks into the treatment to around 6 months after - but 1 year on and no pain at all now and I'm almost back to normal which is a new normal but no issues.

Cystitis was a problem for around the same amount of time, the cystitis sachets are a great help and they are safe to take long term.

Sending hugs and good luck to anyone going through or about to go through radiotherapy at the moment, it's a slog but you get through it :)