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Preparation for Radiotherapy

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User
Posted 12 Mar 2023 at 12:55

Hello all, my OH will be starting 20 rounds of RT next week. Is there anything he needs to do to prepare for this? We’ve been advised to apply E45 cream to the skin where the treatment will target to prevent or limit any burning. Has anyone experienced any other side effects from RT? 


Also, the treatment starts on a Tuesday and is 5 days on and 2 days off, are we right to assume this will mean the 5th session will fall on a Saturday? 


Thanks


Nic

User
Posted 12 Mar 2023 at 19:40
Usually mon to Fri , a few tips wear loose clothing , boxer pants , slip on shoes , after you been zapped , it doesn’t hurt at all , you will need to pee and fumbling around getting dress is not want you want . Take a pee bottle with you in car you might need it driving home , 20 factions ,, the first ten will be ok , 10 to 20 you might feel tired , needing to pee and bowel movement urgently . You will find the sessions will soon pass , and I found it like a family , everyone in same boat , try and get a toilet card just in case you get caught short while having the treatment . Don’t worry ,I treated like an adventure and found it interesting , the machine is something else god bless the inventors 😂 and of course thank you the nurses they do us proud . Good luck ! Keep us informed
User
Posted 13 Mar 2023 at 08:54

Hi Decko,


 


When I started the RT last year, on the first appt, I was asked if I wanted 0800 start everyday,  that time suited me so most were at 0800 with a few before 9000. Ask if you can set a regular time.

User
Posted 13 Mar 2023 at 19:26

Thanks for your comments and advice, it’s all been really helpful. I will ask about the E45 as I don’t want my OH using it if he’s not meant to..it came from a friend who’s been through RT for a different cancer but I’m sure every individual is different.


He’s very concerned about the frequency of needing  the toilet, we are fortunate the hospital is only 25 mins away. We will take a bottle just in case as it sounds there is a risk he could need to go urgently!!


I’ll keep you all posted on how it goes, but please continue to share any experiences/advice about RT as we both find it incredibly helpful.


Thanks


Nic

User
Posted 12 Mar 2023 at 19:54

As Malcolm says Monday to Friday. So even though five on two off, if you start on a Tuesday first it will be four on and two off the first week, and the last week will be a Monday just after a weekend off. If you have been advised E45 by the radiotherapy department that is fine, never use suncream whilst on RT. Don't take any kind of antioxidants, try and avoid any weight gain or weight loss from the planning session till the end of RT.

Dave

User
Posted 12 Mar 2023 at 20:16

NS78, if he is struggling to hold the urine he could buy some tena pads to put in his underwear. I had a pad in my underwear , they only pulled my waist band down a little.  I took a urine bottle into the treatment room with me and was told if I needed to I could use the bottle in the treatment room. Find the nearest toilet to his treatment room and find a reserve toilet. Put a towel in the car in case he needs to use a bottle, nothing worse than want a pee sat next to a coach full of people 😀. I find trying to pee in a bottle sat in a car seat almost impossible.


I had my salvage RT over the Easter and May bank holidays so my treatment included a couple of Saturday morning sessions.


Hope all goes well.


Thanks Chris 


 


 


 

User
Posted 12 Mar 2023 at 20:39

I start my RT on 5th April for 2 days then have 4 days off for Easter, then Monday to Friday from then on. I assume this is not an issue but will ask at my CT scan on Tuesday. Unfortunately my times are different on most days so I will need to be on the ball and make sure I do t miss any!

User
Posted 12 Mar 2023 at 21:13

Originally Posted by: Online Community Member
We’ve been advised to apply E45 cream to the skin where the treatment will target to prevent or limit any burning.


 


Depends who advised you - if it is in the instructions from the hospital then just clarify whether they mean before or after each session? If the advice came from a 'helpful' friend or neighbour then absolutely not okay to do this without speaking to the radiotherapy team. General advice is not to have any creams on your skin during RT as the chemicals in some can disrupt the radioactive beams. Also avoid any perfumed / scented / chemical laden shower gel ... a gentle unfragranced shower gel or body wash is best (e.g. baby wash, sanex, etc)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Mar 2023 at 23:53

Start doing pelvic floor exercises now, if he hasn't already. This may help him stay continent towards the end when it gets more difficult to hold a bladder full.


Some centres might run a Saturday session, but others don't. You'll get given your timetable.

User
Posted 13 Mar 2023 at 11:17
When he arrives at the treatment centre, he will need to drink a cup of water, because he needs to have 'an empty bowel and a full bladder'. He will soon get used to seeing the same faces if his treatment time is farly constant. I asked for early appointments, because that made parking easier and meant that I still had the rest of the day to do things. Patients used to donate bottles of fruit squash to make the water taste better, and there was usually a tin of 'Heroes' or 'Quality Street' which someone had brought in. From appointment time to leaving was usually around 45 minutes - the actual treatment is only a few minutes long, and completely painless.
Hope it all goes well.
Hermit
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User
Posted 12 Mar 2023 at 19:40
Usually mon to Fri , a few tips wear loose clothing , boxer pants , slip on shoes , after you been zapped , it doesn’t hurt at all , you will need to pee and fumbling around getting dress is not want you want . Take a pee bottle with you in car you might need it driving home , 20 factions ,, the first ten will be ok , 10 to 20 you might feel tired , needing to pee and bowel movement urgently . You will find the sessions will soon pass , and I found it like a family , everyone in same boat , try and get a toilet card just in case you get caught short while having the treatment . Don’t worry ,I treated like an adventure and found it interesting , the machine is something else god bless the inventors 😂 and of course thank you the nurses they do us proud . Good luck ! Keep us informed
User
Posted 12 Mar 2023 at 19:54

As Malcolm says Monday to Friday. So even though five on two off, if you start on a Tuesday first it will be four on and two off the first week, and the last week will be a Monday just after a weekend off. If you have been advised E45 by the radiotherapy department that is fine, never use suncream whilst on RT. Don't take any kind of antioxidants, try and avoid any weight gain or weight loss from the planning session till the end of RT.

Dave

User
Posted 12 Mar 2023 at 20:16

NS78, if he is struggling to hold the urine he could buy some tena pads to put in his underwear. I had a pad in my underwear , they only pulled my waist band down a little.  I took a urine bottle into the treatment room with me and was told if I needed to I could use the bottle in the treatment room. Find the nearest toilet to his treatment room and find a reserve toilet. Put a towel in the car in case he needs to use a bottle, nothing worse than want a pee sat next to a coach full of people 😀. I find trying to pee in a bottle sat in a car seat almost impossible.


I had my salvage RT over the Easter and May bank holidays so my treatment included a couple of Saturday morning sessions.


Hope all goes well.


Thanks Chris 


 


 


 

User
Posted 12 Mar 2023 at 20:39

I start my RT on 5th April for 2 days then have 4 days off for Easter, then Monday to Friday from then on. I assume this is not an issue but will ask at my CT scan on Tuesday. Unfortunately my times are different on most days so I will need to be on the ball and make sure I do t miss any!

User
Posted 12 Mar 2023 at 21:13

Originally Posted by: Online Community Member
We’ve been advised to apply E45 cream to the skin where the treatment will target to prevent or limit any burning.


 


Depends who advised you - if it is in the instructions from the hospital then just clarify whether they mean before or after each session? If the advice came from a 'helpful' friend or neighbour then absolutely not okay to do this without speaking to the radiotherapy team. General advice is not to have any creams on your skin during RT as the chemicals in some can disrupt the radioactive beams. Also avoid any perfumed / scented / chemical laden shower gel ... a gentle unfragranced shower gel or body wash is best (e.g. baby wash, sanex, etc)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Mar 2023 at 23:53

Start doing pelvic floor exercises now, if he hasn't already. This may help him stay continent towards the end when it gets more difficult to hold a bladder full.


Some centres might run a Saturday session, but others don't. You'll get given your timetable.

User
Posted 13 Mar 2023 at 08:54

Hi Decko,


 


When I started the RT last year, on the first appt, I was asked if I wanted 0800 start everyday,  that time suited me so most were at 0800 with a few before 9000. Ask if you can set a regular time.

User
Posted 13 Mar 2023 at 11:17
When he arrives at the treatment centre, he will need to drink a cup of water, because he needs to have 'an empty bowel and a full bladder'. He will soon get used to seeing the same faces if his treatment time is farly constant. I asked for early appointments, because that made parking easier and meant that I still had the rest of the day to do things. Patients used to donate bottles of fruit squash to make the water taste better, and there was usually a tin of 'Heroes' or 'Quality Street' which someone had brought in. From appointment time to leaving was usually around 45 minutes - the actual treatment is only a few minutes long, and completely painless.
Hope it all goes well.
Hermit
User
Posted 13 Mar 2023 at 19:26

Thanks for your comments and advice, it’s all been really helpful. I will ask about the E45 as I don’t want my OH using it if he’s not meant to..it came from a friend who’s been through RT for a different cancer but I’m sure every individual is different.


He’s very concerned about the frequency of needing  the toilet, we are fortunate the hospital is only 25 mins away. We will take a bottle just in case as it sounds there is a risk he could need to go urgently!!


I’ll keep you all posted on how it goes, but please continue to share any experiences/advice about RT as we both find it incredibly helpful.


Thanks


Nic

User
Posted 24 Mar 2023 at 22:19

So my OH has just completed his first week of radiotherapy. He’s feeling ok so far apart from the usual tiredness, but doesn’t appear to be suffering with any side effects at the moment. The only thing different he’s noticed is a dull ache in the area where they are targeting, says it’s feels a bit like toothache. 


Has anyone else experienced this kind of pain during radiotherapy? I’m just wanting to make sure it’s normal? 


Thanks 


 


 

User
Posted 25 Mar 2023 at 10:17
Nic

I didn't have many problems or pain with RT, my only issue was during and since that treatment when I needed the toilet I needed the toilet.
I had a 40 mile round trip to Preston for my treatment, once I got taken short on the M55 but apart from that I got away with it.
Good luck with the rest of the sessions .
User
Posted 25 Mar 2023 at 10:33
Is he having daily enemas? That can cause muscle ache
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 Mar 2023 at 09:02

Thanks Jasper, my OH is also receiving his treatment at Preston, I hope your experience was as good as ours.  We have found the nurses absolutely amazing.  


Really pleased to hear you didn’t experience many side effects, I hope everything is going well for you.


Nic 

User
Posted 26 Mar 2023 at 09:07

Thanks Lynn, yes he is currently on daily enemas, tomorrow is his last day to use them then the rest of the sessions won’t require them. 


I didn’t know about enemas causing muscle aches so that’s really helpful to know.


I’ll keep the forum updated with progress in case people find it helpful.


Thanks


Nic

User
Posted 26 Mar 2023 at 10:15

Hi Jasper


My onco recommended  HT and RT. I had 20 sessions of RT at Guildford. No significant problems and  no aches in the bum. Main effect towards the end of RT was that of rushing to the loo with little warning! Radiographers and all staff were wonderful. Good atmosphere and chat in the waiting groom while we wondered if we had drunk too much or too little water.


Main problem at present is that side effects of HT are so slow to go away.


Good luck to us all.


Peternigel

User
Posted 26 Mar 2023 at 10:15

I start my RT on 5th April at Western General in Edinburgh so it’s useful to hear of others experiences going through it at the moment.


Thanks!

User
Posted 26 Mar 2023 at 11:18

I had 37 fractions off radiotherapy 2 years ago had a bit off soreness but not too bad and was a bit tired towards the end but worked all the way through treatment also had treatment on the odd Saturday good look with your treatment 👍

User
Posted 09 Apr 2023 at 20:34

Hi all, 


I thought it might be helpful to provide an update on my OH’s RT, particularly for those of you starting treatment soon and also for a little advice.


Graham has received 14 out of 20 sessions. For the first 10, he didn’t really notice any particular side effects, just feeling a little more tired than normal.  However, the last 4 sessions have really made a difference and he is now experiencing a sudden urgency to open his bowels which he is finding incredibly painful. The hospital have prescribed suppositories to help numb the pain, and although these take the edge off, he is now taking painkillers alongside these. My OH has a very high pain threshold and to be honest, we weren’t expecting pain the area, more just the urgency to go to the toilet.


The nurse explained the side effects will peak 2 weeks following the last session.


Has anyone else experienced similar pain whilst going through RT? 


Nicola

User
Posted 16 Apr 2023 at 20:51

Just thought I would post another update following Graham’s RT. He now just has 2 sessions left and we are looking forward to him ringing the bell on Tuesday with our 2 children there to celebrate 😊


The review nurse was a bit confused as to why he’s been in so much pain as it’s not a common side effect, however have given further medication which has started to help..slightly!!


Can anyone say from their experience how long it will be before the side effects go? We are going to Spain in June so hoping he will have fully recovered by then..or are we being a bit too optimistic?! 

User
Posted 16 Apr 2023 at 21:14
Hi NS78
Glad Grahams treatment is nearly done, it must be such a relief!
I guess everyone if different, but I’ve had 6 out of 20 sessions and I’m hoping to be back in Fuerteventura in June.I’ve heard some people take Imodium before they travel just in case. I’ve also bought pads in case of accidents.
I wish the Western General had a bell as it’s so symbolic I think. I can understand that maybe some people don’t want to make a fuss when finishing treatment but it’s such an emotional and milestone moment to many. I am actually thinking of asking my Maggies Centre if I can donate a bell to them so that those visiting following the end of treatment can have the opportunity to mark it.
User
Posted 16 Apr 2023 at 21:35
NS78, while I am sure everyone isn't quite the same, I went on holiday about 6 weeks after my last session and was able to be as active as I had planned without problems. So I'm hopeful for you.

I have to say I was pretty fragile for the first month after RT, but once over that the only problem was getting tired a bit earlier in the evening than previously.
User
Posted 17 Apr 2023 at 01:02
"I’m hoping to be back in Fuerteventura in June"

Unless you are very dark skinned, you will need factor 50 sun cream or total sun block and to wear a t-shirt as much as possible. Your skin around your midriff will be very sensitive to sun burn.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Apr 2023 at 06:47

Thanks, Yes indeed LynEyre I am aware of this. We are very careful in the sun anyway and always wear a T-Shirt in the summer months and sit in the shade during the day. I know it’s Fuerteventura where anything(and everything🤣) goes but my midriff will not be seeing the sun for a good while😎

Edited by member 17 Apr 2023 at 06:48  | Reason: Not specified

User
Posted 17 Apr 2023 at 15:47
I am not sure from your post whether the good people of Fuerteventura should be sad or relieved!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Apr 2023 at 22:46
if you are anything like me, my midriff was a good deal less comely after 9 months of hormone therapy! Covering up might be best all round.
User
Posted 18 Apr 2023 at 06:30

One thing I’ve learned during this ‘journey’, it’s always good to have a laugh even if its at your own expense.😊


At my local Maggies Mens Cancer Support Group last week, I brought up the subject of Orchidectomy as opposed to HT for life, and once I had explained what it was,  the comments we got about it being non-reversible were hilarious and we had such a good laugh…


’Can you not just freeze them in case you want them back?’
‘You can’t just point at a jar on the shelf and say I’ll have these ones please’🤣🤣🤣


and to answer your question Lyn, definitely ‘relieved’!

 
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