Two weeks post Radiotherapy - the future looks bright!

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Hi everyone and time for me to give something back to this wonderful courageous Community and share my experiences  of the past 6 weeks!  Special thanks to the Community Champions including Alpine Wanderer who gave me some really helpful tips on Parking and side effects.

So I am in the G9 Club (see my profile) and have now completed 20 fractions of RT at the fantastic Peterborough City Hospital.  Have to agree with the Champions and others - it`s the monotony and routine that get`s to you - and the small delays to appointment times which can be a challenge.  You just accept it because you know it`s a means to an end and the Radiographers are dealing with so many people and also technical issues with the LINAC machines.

I found the prep relatively easy after a few sessions and quickly learnt not to fill the bladder too much until I was sure of the time of the session,  After week three I was sailing and apart from going for a pee more than usual and wind even though I followed a strict diet - no greens, pulses and drinking at least 2 litres of water every day.  I`m still doing that but slowly re-introducing all the taboo stuff like onions, baked beans and a glass of wine or two at dinner time.

Week 5, after treatment finished the sides started to peak - big style.   The team warned me what to expect and I had the full Monty!   Bowel Urgency/Frequency and something called Tenesmus - a feeling of wanting to go but you can`t.   This was followed by Cystitis (painful wees) caused by RT not infection.  I was now up 5/6 times in the night and going to the loo very often during the day - the toilet paper shopping went off the scale Sweat smileJoy  I was also knackered!

Then - three days ago - things started to change for the better.  I  was given some suppositories to help with the Tenesmus and took Ibuprofen in the evening and on the last wake-up circa 5.00am.  The last two nights I have been up just twice and sleeping like a baby in between!  I feel like a new man!  I haver fought the fatigue through dog walking and generally pushing myself to do more exercise including mowing the lawn and just staying active.   I would normally rest when I returned from the sessions which were all in the afternoon so that my Rock (Missus) could come with me and be my chauffer too.   She`s been amazing - we all know this is a couple`s challenge and I love her to bits!

I now have my forward plan for a curative pathway and next steps will be a review with Radiographer next week followed by a F2F with my Oncologist 6 weeks later.   I will need a PSA test before the next meeting and then continue with RT for the next 3 years with 3 monthly bloods in the 1st year.  I am an optimist by nature but I feel as though the worst is over and we can look forward to a "new normal" and continue enjoying our lives Fingers crossedFingers crossed.

I guess the key message is - listen to your body, talk and listen to your RT Team, soak up as much as they can throw at you, eat and drink healthily, keep as fit as you can, and, above all, keep smiling - WinkSweat smile

I hope this helps those facing the next part of their journey and I will continue to keep up to date with all that`s going on here and keep the positivity going when I can!  All the best everyone - the sun is shining now too Sunglasses

  • Good Morning Geoff ()

    Well that's great news, RT completed and a "Curative Pathway" on HT for the next 3 years - CONGRATULATIONS,

    It will feel strange now RT has finished as you have no daily appointments. The Hormone Therapy for 3 years is hard work but with a positive attitude you will get through it (I am on my last 5 months of 36 months and I had a couple of "bad weeks"). however it's great to read positive news and your feedback is very much appreciated.

    Good luck with the rest of your journey - keep us posted.

    Best wishes - Brian.

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  • Hi I’m Gleason 7 , booked in for my ct planning scan on 16 July then probably rt around August time would you know the waiting times would be in between these two appointments thanks Paul 

  • Hi Paul - I guess that depends what on where you are located so probably a question for your specialist team or Oncologist.

    My CT was April 16th and RT commenced May 8th.  I doubt they would do the tattoos and then keep you hanging around for too long but ask the question 

    Good luck Fingers crossed 

    Geoff S

    We`ve Got This!

  • Afternoon Paul,I’m the same Gleason 7 as you and was diagnosed in January I’m currently on HT 2 months now and getting RT August,just wondering if you were offered HT in between as it stops the cancer in it’s tracks from growing,Robert 

  • Hi Robert, I was diagnosed in march and was put on hormones straight away due for my second zoladex injection on July 4th ct planning on 16 th good luck with your rt Thumbsup

  • Hi Geoff

    Great to hear that your side effects are disappearing. I completed 20 days of RT 10 days ago. I still have the bowel issues that you described so well. Its debilitating. Can’t really go anywhere. I was given a month’s supply of Prednisolone Rectal Foam but, and I realise this sounds strange, I have great problems administering it. The constant visits to the loo emptying my bowels has resulted in a sore anus etc which makes it difficult to use.  It’s the one thing that is really a problem. I’m hoping that the problem will gradually disappear on its own but I may be wrong about that. Any advice is welcome.

  • Try smearing petroleum jelly ( eg Vaseline)around the affected parts 

  • Thanks - I have tried this. Maybe i’ll try again.

    What i have is a foam but what Geoff had was a suppository. Maybe that would be easier. When i used the enema as part of the prep for RT i had no problems but the “application nozzle” for this Prednisolone Foam is quite rough, not smooth like the enema nozzle.

  • Hi Coltrane - sorry to hear this and again would speak to the Radiologists or Specialist Nurse in the first instance.   
    I found the suppositories helped tremendously and are fairly easy to administer using a latex glove.   At its peak I used one in the morning before leaving the house and one last thing before bed.

    i also found the Ibuprofen helped and was taking 2 - early evening, then before bed and then after my “final “ wake up circa 5am.  Obviously you need at least a 4-hour gap between doses.

    My bowel and bladder issues started to ease 12 days after treatment finished- so you could be soon over the worst Fingers crossedFingers crossed

    Speak to your Team and see what they recommend as we are all different- but mention my experiences too.

    All the best and keep us posted on progress- hopefully not long to go now Muscle

    Geoff S

    We`ve Got This!

  • Oh and keep hydrated and stay caffeine free for the duration- I am still drinking at least 2 litres of water a day and decaf coffee and tea!

    Geoff S

    We`ve Got This!