Day 28!!

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I've made it through. My radiotherapy team were just lovely  - professional and supportive and caring. So much love for our NHS! But I am so relieved not to be doing the journeys any more

So, how was it? I felt nauseous in the mornings and evenings almost immediately so I always took the anti sickness meds.Up to the end of week 2 and partway in to week 3 I was broadly OK though. I was having my long mornings walks, travelling in to the hospital on the train,  and was eating full meals. Week 1 I had a worry when they said I had a lot of gas in my system 2 days running - they emphasised the low fibre diet and I have been eating beige food ever since  - that didn't recur.

By the end of week 3 I was getting so tired and I had a very low white blood count. I had to have blood tests every other day for a week. Everything online said eat protein so I had lean chicken breast almost every day and by the following week it was back up again. After talking to the specialist nurse I bought Flamigel RT and started using that 2 or 3 times a day. It felt cool and calming on my skin. 

End of week 4 was when the side effects of the radiotherapy really kicked in. I perfected the John Wayne swagger and continued with the Flamigel RT. The nurse gave me Instillagel mixed with Hydrogel with alginate to put on broken skin. The Instillagel is an anaesthetic and the hydrogel forms a protective barrier. It stings a bit when you put it on but definitely helps - especially in areas where skin is rubbing together. From this point on I started taking paracetamol and ibuprofen - alternating them - although I really didn't feel it was making a huge difference. I was eating though and maintaining my weight.

Week 5 was hard going and I could really have done without the last 3 week 6 sessions but just clawed my through. I think that somehow towards the beginning of week 5 was when the chemotherapy really kicked in - I developed a rash on my arms and legs and the knuckles on my hands, and I had so much difficulty pushing myself to eat anything at all. And the diarrhoea became more watery and more unpredictable. By the end I had lost 2 more kilos.

Day 28 was yesterday and I was pleased to have got through but it was a really difficult day, so now I've decided to take the codeine with paracetamol and I just have my fingers crossed that I don't get constipated. I am taking laxido every day. It has been a balancing act all the way through between constipation and diarrhoea. I'm hoping that as the chemotherapy leaves my system, the rash will go and some of the fatigue, and I'll feel more like eating.

So that's where I'm up to and it's a sunny morning. Much love to everyone on here. xx

  • Hi  ,

    Firstly huge congratulations on completing your treatment. Secondly thank you so much for posting this account of your journey through your treatment, I found reading other peoples stories of going through treatment really helpful when I was facing my own. Get plenty of rest over the next couple of weeks then hopefully you’ll start seeing a marked improvement in your recovery. Sending lots of healing thoughts your way. 

    Nicola 

  • Fantastic Lindamae you did it ! It’s such a good feeling to know that you don’t have to do the daily trips back and forth isn’t it? Now to rest and recover. Hoping you feel much better and stronger in the days to come x

  • Congratulations on getting to the end...I'm 6 weeks post treatment and feeling stronger every day.  I had the burns right at the last week of my treatment, I think that was more painful and uncomfortable than the cancer. But the flamagel  was amazing once my colorectal nurse told me about it. It healed in a matter of days once I started with it. I had a stoma post treatment so I understand the diarrhoea/ constipation issue, it is a balancing act isn't it.

    Hope you feel stronger and start to enjoy the free time you have to recover now you're not going to hospital  x

  • Congratulations Lindamae on completing your treatment and as Nicola said it’s really great to read someone else’s progress and experiences through treatment. When you don’t have the daily trips to the hospital it’s makes such a difference and you now can devote that extra time just concentrating on recovery. You never forget those vital weeks as each day goes by with some challenges and some improvement. I remember when my hospital trips finished we were experiencing heatwaves in the UK and by husband bought me a cocoon garden basket with a sun shade and I spent my time lying outside taking in the beauty of the trees, flowers etc and it was such a relief to be here and even though I was in pain you had gaps of relief which gradually increase and recovery is not far away. I would lay there and say to myself that beast within me has gone! Yes, take the laxido and it does take time for your bowels to fall int synch again. Sometimes they don’t and an adjustment to the diet is needed. Good luck

  • Lindamae

    You made it!  I am so happy to read such a positive post and I hope you are relaxing now that the daily visits are 'behind' you!  I am sorry that you had such a reaction to the chemotherapy, hopefully now you have finished treatment your skin and appetite will improve.  You are very wise taking precautions against becoming constipated, definitely not recommended when everywhere is so tender, internally as well.

    And a sunny morning makes all the difference!

    Irene xx

  • Oh, LIndamae, you DID IT!! Congratulations on getting it done! 

    Thank you for writing up this comprehensive review of your journey. This iwll be so helpful to others coming along behind you.

  • I start my radiotherapy and Chemo in two weeks .

    Thank you for sharing .

    Do you mind me asking what is next on your journey or was your treatment post surgery.?

  • Hi Smiffey,

    No I haven't had surgery, just the chemoradiation.  So far as I remember I will have a 3 month scan and if no concerns are raised from that then a 6 month scan.  I have a follow up appointment with the oncology consultant in 3 weeks and I'll check with him again then. 

    Wishing you all the very best for your treatment, all the advice and support on here has been so useful to me and I'm sure you'll find that too.

    Linda xx

     

  • Hi Jaycee,

    That's a lovely image - relaxing in the garden with the flowers and trees. What a lovely husband!

    Could I ask how long it took for your bowels to fall into synch? I have gone from watery diarrhoea to absolutely nothing for 2 days  - since I started the codeine. I've had 2 laxido this evening instead of one but am getting anxious now! I've been eating a pretty fibre free diet but have begun re-introducing wholegrains now and will move on to more fruit and veg.

    Linda x

  • Morning Linda, my visits to the toilet were pretty much five or six times in the very early post treatment say four months as I was eating pretty much my normal diet which is pretty healthy with whole meal bread as I hadn’t eaten white bread for years. All fruits and vegetables and the occasional treats. I reduced my fibre/fruits and it did slightly improve and at the first Christmas I was six months post treatment and we got the usual fruit like satsumas which I love and of course chocolate. I noticed that I couldn’t stop going to the toilet and I had an appointment with the oncologist and said I seemed to be going backwards but she said I had been eating something different and said chocolate can act as a laxative and the satsumas. I was referred to a dietitian who advised trying the Fodmap diet for three months and this did work without making me constipated. I now try and concentrate on more soluble fibre foods. I can usually go a couple of times in the morning depending on the day before diet. I’m due to go for testing next Thursday at the nuclear science hospital to have tests to see if I have a damaged smaller bowel so maybe that will answer some questions. My recent surgery (9 weeks) has removed the pain of passing stools. I am lacto free and have only decaf coffee maximum two cups a day. I also don’t eat after 6pm to give the digestion time to rebalance. At two years post treatment I’m not going to say everything is as it was but you certainly improve most of the time and learn your triggers. My friends think I have perfect willpower when avoiding our afternoon meet ups avoiding the cakes but I say what goes in has to come out and it’s not worth it and now doesn’t bother me at all. I will let you all know what the hospital entails and see if I can find out if or how these side effects we get are caused by pelvic radiation. 

    Julie