Radiotherapy Tips

I’m 9 sessions in out of 25 for my external radiotherapy (2 brachytherapy to come too) and thought I’d share some things I’ve picked up so far, in case it helps others! Some are things I wished I’d known before!

1.  Timing - Allow for appointments delays as there may have been issues with machines or previous patients. At my hospital they sometimes swap us to another machine too. On one occasion I arrived to find there was a two hour delay but I was seen after 90 mins as they were able to call staff in and open up another machine.

2. Drinking - You may be asked to come early for the appointment (mine says half an hour) and will then be told when to start drinking a specified amount of water (mine is 3 cups). That may be during the half hour, but may not be till later if they are behind. It’s important to be well hydrated at home before the appointment, and even to drink during the journey, which will then help the 3 cups of water to go straight to the bladder.  When you’re told to start drinking, I suggest having a wee first as otherwise if any delays happen you may be rather uncomfortable by the time they call you.

3. Locations - On your first visit, acquaint yourself with where the other radiotherapy machine rooms and waiting areas/toilets are as your appointments may be at different machines and you may also be swapped to another machine if there’s a delay at yours or if the machine is needed urgently. My hospital has 7 machines - three have one waiting area, three have another, and 1 is in a separate building.

4. Parking -  If you’re driving or being drive in, ask about parking concessions or discounts for radiotherapy patients. For my hospital, you take a ticket on entry, then pay at a machine before leaving. At my hospital radiotherapy patients get a discount - what we do is insert your parking ticket into a machine in radiotherapy reception and it alters the tariff so that when you go to the machine to pay afterwards it caps it at £2.00.

5. Water - hospital water is often ice cold from a machine. I found it hard to drink 3 cups of ice cold water within 10 mins, it also made my tummy feel a bit queasy and I think I swallowed a fair bit of air drinking it as I burped a lot after. I saw a tip on here to bring your own water, so I took a paper cup home, found a bottle that took the equivalent of 3 cups, and brought my own instead. It made it so much easier.

6. Clothing - you will likely be asked to change into a gown, but, if you prefer, and are wearing separates, you may be able to keep your own clothes on and just slip your trousers, shorts or skirt off in the machine room. I wore the gown for the first 2-3 days, then saw two men go in without changing and realised I’d prefer that too. I feel less helpless and more “normal” in my own clothes than in a gown. So when they ask me to change, I say “I don’t change” and I then just go in as I am. I then remove my trousers and hop onto the platform. Once laying down I move my pants down to mid thigh, and raise my top so that the tattoo dot under my boobs is visible. They’re completely happy with that and I feel more at ease. I didn’t wear any jewellery for my first few visits because I thought we couldn’t, but we can so I do!

7. Scan and Treatment - usually we are scanned first to make sure bladder and bowel are fine and that we’re in alignment. If not, they may ask you to get up, go out, and maybe drink more water or go to the loo and start again, or they may shift your position. If all is fine, treatment follows straight after and you may not realise it’s happening. Sometimes they may skip the scan to save time. I had that once and it was so nice that it was quick! It’s important not to move until they come back into the room and tell you it’s all done.

8. Side effects - if you have experienced anything after treatment that is out of the ordinary for you, tell one of the radiographers and they can advise or send a message to someone who can prescribe. Prescribing is often only Monday to Friday. You should get a weekly review but that may vary depending on availability and timing. I had my first review after 7 treatments because of the Easter break. And I’m not having one this week at all as I have a day off treatment on my review day, but the staff can reach him any time if I need anything.

9. Eating part 1 - you should have been given guidelines as to certain foods and drinks to try to avoid during treatment. This is really important as being constipated or having wind could delay your session. If I’m wanting to eat something from there I would do so only on my days off - for example, at the end of a week I have taken to stopping for a drive through McPlant and fries on the way home as a treat! I’m fortunate in that my hospital doesn’t insist on daily enemas (some do) so I take my bowel management very seriously! At mine they just say one bowel movement in 24 hours is usually enough to avoid an enema so I asked for afternoon appointments as I usually go in the morning!

10. Eating part 2 - it’s important to maintain your weight during treatment and not lose. You are likely to need to take in extra calories during treatment as, when radiotherapy starts working, nuking your cells, your body will go into overdrive trying to make new (healthy) ones and will require extra energy to do so. I take a couple of snacks with me every day for just after treatment, and then have chocolate in the evening. At my review the radiologist said the extra calories just need to be calories, you don’t really have to watch what they come from, so chocolate, biscuits, cake or ice cream is fine! And if you can’t really face eating, a milk shake or soya milk is also fine. Doing this should also reduce the risk of certain side effects, my radiologist told me.

10. Creams - don’t use any creams anywhere in your pelvic area that have metal content during your treatment, or, if you have to, wash it off before you go. For example, antiseptic creams (eg Sudocrem) usually contain sodium or zinc. Thankfully I asked my oncologist about this before my treatment started. Some haemorrhoid creams do too (eg Anusol) and also some moisturising creams. The treatment would still work if you used them, BUT the radiation would home in on the metal content areas and effects in that area would be magnified - that’s what my radiologist told me. Preparation H is fine as there’s no metal content. Before you use anything at all in anywhere in the pelvic area check with your CNS or radiotherapy staff and they will tell you what you can use or may prescribe something for you.

11. Driving - before my treatment started, I asked my CNS about whether I’d be able to drive myself. I live 45-60 minutes away and the hospital isn’t near a train station. My husband would drive me but he works from home and we have a dog, plus I just find I generally keep myself together better mentally in my own company. She replied that I should be okay for the first 2 weeks but needed to be careful after that. I asked whether it might happen that I drove to hospital then found I couldn’t drive home, and she said no - that if it happened, I’d know before I left home. I’m just about at the two week mark now, so will be watching myself, but so far so good. 

12. Your hospital may have free WiFi - worth checking! 

That’s it for now - I may add to this as time goes by! Please feel free to add any suggestions or ask any questions!

I will also put a copy of this In the pinned Radiotherapy support thread so it doesn’t get lost!