Wow firstly, I can't believe I've made it to end of week 4 of treatment... I started on 9 December and have now completed 20 treatment days (whoop whoop). And there's no turning back now! So here's my reflections:
And I guess the only other thing to share is that I've moved myself into the spare bedroom - and that's helped mine and the hubby's sleep massively... I can fidget as I need.
Can't say I'm excited about starting week 5 on Monday but knowing how I feel much more me when not taking chemo - is helping me to think that actually in just 8 more treatment days.. fingers crossed that's me done on treatment - it will just be the burns and blisters.....and I'm sure by then I'll be making the most of the morphine!
Hope you are all doing well and able to enjoy a treatment free weekend.
Lots of love
Ali
Xoxo
P.s for those of you who completed treatment - did you treat yourself to anything for achieving that milestone???
Hello Squeak
I also was given a bottle with the line indicating how much I should drink. I was so stressed after my planning visit that I left the bottle behind in the cafe where my husband was waiting for me. So I did without the bottle and my routine was the same every day. Our drive was about 45+ minutes from the hospital and as well as having a massive pot of tea in the morning, I would drink a large bottle of very diluted squash during the drive there. The challenge for me was controlling my full bladder until the session was over, (no joke after two children!) I really don't think having an overfull bladder matters when having radiotherapy.
The real challenge for me was once when I went into the radiotherapy room and after they prepared me on the treatment table, they stopped the session and said I had bubbles of 'wind'. So off I went to a cubicle and tried to break wind (quietly too in deference to the others in there), all the while controlling my bursting bladder! Bearing down took on a whole new meaning. In the event all went well.
I walked my dog initially but not for long. I certainly do now so aim towards that. And indoor exercises to music sounds a great idea, just don't push yourself too much during treatment and be very forgiving of what you don't feel up to doing.
Hoping all goes well on Tuesday.
Big hug
Irene xx
Thank you...
Trying to make sure I do everything right..im sure by end of week 1 I will be a expert like you wonderful people..
Re the breaking wind..im constantly doing that at the moment..I. hoping afterwards it stops (finger's crossed )
Xx
Squeak
Hey Squeak, I finished treatment on 24th December. I found the 1st 3/4 weeks of treatment pretty much ok, I was having daily oral chemo tablets alongside daily radiotherapy. My skin felt sore initially but then calmed down, I tried to get out for daily walks but that didn't last long but I was also still working from home until 12th December then I had a double radiotherapy on the 13th & my body said no more. I spent most of the 5th week in bed other than the hospital appointments because the tiredness hit me. I had to empty my bladder 40 mins before radiotherapy then drink 500mls over 20 mins then wait 20 mins for my bladder to fill. It pretty much played ball because the timings matched when I had my planning scan. My rear internal skin started to break down in week 5 and the skin around my groins became very dark and my Macmillan nurse they would break down. My lady bits felt like they were on fire & when I emptied my bladder so they took a water sample which was clear, I was advised the pain I was getting was due to the radiotherapy causing internal swelling so I took paracetamol and focused on breathing exercises to get me through weeing. I used a hand held bidet to wash areas with water which was comforting. I experienced diarrhoea daily and I got no warning which wasn't welcomed by me but my husband now knows how to mop the floor. I purchased 10 pairs of oversized mens cotton boxer shorts and I'm still wearing them. After treatment finished I went downhill quite quickly, the exhaustion was unreal, I didn't have the energy to even speak to anyone so I allowed my body to do what it needed, I found having a weighted blanket over me really helped. My skin around my groin started to break down around 7 days post treatment, I've found sitting in a bath of salted water and washing with dermal cream helped massively. My back passage wounds are still weeping but this weekend I feel like I've turned a corner in regards to having a little bit more energy & feeling a bit more like me. I still can't sit on my bum & I'm walking like John Wayne but I think I can see the light.
I am feeling a little lost & in no mans land because after seeing medical staff daily to not seeing or hearing from anyone I feel lost and I'm just waiting for my next appointment. I'll have no idea if treatment has worked until around 4/5 months when they scan me so although I want life to get back to normal I've got that constant worry in my head about what if it hasn't worked.
Apologies for the long waffle, that's just my story and I know every person's treatment affects them differently.
Good luck with everything & you will 100% get through this, stay strong, positive & focused. We are all warriors xxxx
Just to say you’re doing amazing Ballerina . Also I completely sympathise with the feeling of being lost after that last treatment session. I expected to feel elated at that last session & although I was very grateful not to be having any more radiotherapy I was strangely emotional & in the coming days had a feeling of what can only be described as abandonment! I too had that yearning for a taste of normality again which spurred me on to try & do a little more each day but then I’d be hit by a day of fatigue again but I’d rest for a day & be back up & running (well not running exactly!) again the next day or the day after that but as you say juggling wanting normality back & the uncertainty of those early days can be really difficult. I decided on the mindset of what can be done for now has been done & I have to get on with living until I get the results, I made a purpose of keeping as busy as possible on the good days doing what I could when I could & then on not so good days I rested to allow my body to do what it needed to do.
I hope your recovery is a swift one.
Nicola
Hi ballerina
Thank you so much for your post and opening up about your journey and experiences..
You are extremely brave.
I can totally understand how you are feeling now in no man's land.. whilst in treatment you see medical staff daily..but afterwards you feel so alone.. a bit like it was after finding out you have cancer but before mdt...
I do hope you find someone you can talk too from the hospital to get you through these next few weeks.. remember you are doing a fantastic job and you will get through this..
Keep posting on here and we can chat..it may not be medical advice but sometimes it helps just to talk in general
Big hugs x
Squeak
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