I was wondering if anyone is starting chemo rads soon? I'm hopefully starting on Monday 8th and I was wondering if anyone has recently started or about to start would like to share battle stories. Sometimes it helps.
I was also wondering if anyone had recently finished and been advised on how long they need to shield afterwards?
Any thought and advice welcomed. I'm a bit scared.
I started chemorads when covid was at its peak 9th April and finished two weeks ago.
The chemo I went alone, but to be honest a day away from my husband and children was like a spa treat! And the rads I went alone, but again I drove there and drove back on my own. The rads team didn't keep people waiting so it was in and out quite quickly. My cns nurse appointments continued but she wore a mask. I couldn't fault the teams around me with their care. Brachy there were a few differences to the meds they offered, the ward I was on. I've been told to shield until 30th June... I'm waiting further instructions.
Thanks for your reply, Harvitt.
How are you getting on now? Are you relieved to be shielded or frustrated? Xx
Bit of both I suppose. I have only felt frustrated this week tbh as before this I was out having treatment 5 days a week and by week 4 you are feeling tired and the thought of popping out for an hour is just too much.
I guess it's a good sign that you have got to the point of frustration as it's a start to getting better. Have you finished all your treatment now?
It is useful to know that week 4 a turning point. I'm trying to work from home through the treatment but I have warned people that I might flag as I go through.
Do you have any drop in/McMillan support close to you? Our centre is closed.
Big hugs. Xx
I think the frustration is more home schooling (even though I'm a teacher) and my hormones... Or lack of them. I thought I'd miss getting out, going to thr shops but I havrnt. I suppose lockdown has meant everyone has had to stop therefore really apart from going shopping I've not missed out on much.
Please don't work too hard as you will need your rest. If you are tired, sleep. I don't know what you do but make sure you are looking after your needs first.
You are entitled to get signed off work esp if your shielding. Also make sure you get a shielding letter from your gp as you will then be priorised for home delivery from the supermarkets. It does help. Have you got the link address once you have your shielding letter? You may have to niggle your GPS to do it as my docs were useless.
I don't think I have a maggies near me. There was one at my hospital but I never saw it open.
maybe the frustration wasn't a positive after all!
It's good to have your insight on dealing with chemorads and kind of you to take time to reply.
I am signed off at the moment as I was signed off for 8 weeks for the RH. My note runs out the week after next and I was wondering if I need a new one. I think I will now.
I am a teacher too and I am struggling to get my lad to work at home so you are not alone in that struggle!
I am finding working (from home) an escape and some of my newer colleagues don't realise I'm signed off. One tiny positive of the lockdown.
I am gutted that our McMillan centre is closed. A friend was telling me how amazing their support was and urged me to use them. She didn't discover them until her treatment was over but used them a lot when she did. She said their Occy Health support was brilliant as it was cancer specialist. I am planning to use them as soon as they open up. It might be worth keeping an eye out for yours opening up (ours is at the hospital).
I am dreading going into menopause, especially after keeping my ovaries in my hysterectomy. I guess I am only a few years off anyway but it seems an extra issue to deal with. Are you able to have hrt now you are finished treatment?
I would personally get signed off/get a shielding letter as your a school teacher. It's best to just look after you. Your going to need the strength and not have the hassle of planning lessons and creating worksheets. Plus the rads time (for me) was never at the same time each day, plus. With the bladder being 'so' full and when you get further into treatment having poo explosions that then make you empty your bladder it's difficult to plan times for you and lessons, adding on blood tests when your there and meeting up with you cns nurse. I would say to my husband "see you in an hour" and I would be 3hrs due to bowel explosions and then having to fill my bladder up again. I drink loads and loads and on good days my bladder was overful but when toilet troubles happen it's hard to keep one in and let the other side out. Is there anyone at home to help with your son? I don't know how old he is, but you may have times when you are energyless as the rads do take it out of you. Chemo, I was OK, but only finished 3/5 rounds due to the tummy issues and also my hearing somewhat (think this has returned to normal) but there were again times I just needed to rest and be on my own.
Hey! I start chemorads on 8th June, too!! I'm a bit scared but also desperate to get cracking with it.
I will get signed off again, thank you for your thoughts. I'm obviously not looking forward to the poo explosions. Did you ever get caught out/not made it to the loo. I'm wondering if I need to have spare clothes with me just in case.
You haven't said how you are feeling now. How are you getting on generally now?
big hugs Xx
Haha I had a near miss once so after that day I did carry a spare pair of knickers in my bag.
Two weeks after my last treatment and I feel really good. The fatigue is going, my poo explosions have near on stopped, I still get a few leg and hip aches but not too bad, feeling a bit hot and sweaty at night, and I've had sex twice to get it working again.
My advise is drink loads esp on chemo days. See chemo days as Spa days - cleansing you. Rads I use to positively see it as healing and only zapping the FLBCC (little and cancer are the only two words that weren't swears). If you don't understand what or why something is being done - ask the team around you. If you don't want something done - say and ask why and see if they will try and tweak it.
I'll put some knickers in my bag then! Such glamour!
I'm so glad you are feeling better and the bowels are calming down. I am heartened that you have managed to pick up your sex life again. That's a big goal for me.
I hope you continue to have support now the treatment is over.
Big hugs. Xx
I am sending all my best thoughts and supports to you rufus and AliAliOkay. Hope the day went perfectly for both of you!
Wishing you both fab spa days xxxx thinking of you xxxx
It was ok. The Chemo went quite fast considering it was over 5 hours. The radio was ok but involved some fussing around how much my bladder would hold (they were really suprised how full it was!). I had just spent 5 hours being pumped full of liquid though.
I know the side effects will get more each week so I am staying focused on beating the cancer. The steroids are good. I felt a bit tipsy by the time I left! And they sent me home with more. :-)
Thank you, Harvitt,
It went well today. It is a bit sore where the cannula went but other than that it was quite relaxing. I will keep your 'spa day' in my head as I am not dreading next week now.
Did you need to use the anti sickness tablets they give you?
Good luck in your continued recovery.
Much love. Xx
I visualise and told myself it was a spa day. It felt like it after my husband being a total shit prior to the chemo starting and my children being home... So being out of the house, alone time, kindl and Netflix, someone actually looking after me, feeding me, asking how I felt and making me cups of tea really felt like a treat. I saw it as cleansing and bubbles going in and dirt coming out in my wee and out my fingers and toes. I drank and drank and drank. As I got up to have a wee, I'd drink 500ml of my water bottle and then refill. I use to have wee challenges to see how much would come out as I was going every 40min. My normal was 700ml but my personal best was 1500mls! The chemo nurses loved me! One week the ladies sitting in my bay were asking how much I had been this time! I was a bit like a circus freak! Haha
The steriods use to make me sweat at night for the three nights I was taking them. And if I took them past 10/11am I couldn't sleep... It was like a party in my head for one.
Fortunately, the sickness tablets weren't needed.
The first week I felt fine day 2,3,4 and day 5 my head was fuzzy and I felt as if I was tripping (not that I ever have done) as colours were really strong, smells were over the top, ached a bit and felt a bit off colour. By day 6 and 7 felt OK again.
Wk 2 I was fine day 2, but then started to feel a little hung over day 3-5. Tired, no energy, under the weather and like I needed good food and liquids - delicate and fragile like. Felt gradually better 6 & 7. Also remembered my feet/legs /balance weren't steady as much. Hands/fingers weren't as steady or as useful.
Week 3 I felt OK. A bit less energy, but no sickness but that's when the poo explosions hit anf they hit bad mostly due to the rads but maybe some due to the chemo. I had terrible stomach pain as well as watery poo explosions. I had stopped eating anything with fibre, fruit or veg. My diet was white or beige. By day 5 I was washed out, hearing was a little off, again off balance. I informed the chemo nurse when she phoned that week to check up on me. She said she'd email my oncologist to see what should happen next. I sat in the nurses office and cried as I felt so run down. She asked me to get a blood test for my levels and infection markers. She received an email from my oncologist who said that I had had 3 rounds out of 5 and that was enough. I begged that maybe by the next day (day before chemo) I'd feel better and I'd be fine. We agreed I would have a break that week to aid my recovery. I perked up but by week 5 again the oncologist said I had hit a wall and to finish while the going was good. I never the the side effects as really bad. I thought I could feel a lot worse so I was happy to have the minor ones.
Just wanted to let you know I was thinking of you today and sending positive vibes for your first spa day! It s great to read that your first day passed by relatively quickly and smoothly.
Your kind words of advice and insight have meant so much to me in my treatment and it's great to see that Keeley is now providing that same support to you, that you have given to me.
Keeley, I have so much admiration for your openness and honesty on the forum and how you have kicked the butt of your FLBCC.
Lots of love xXx
We are all here together, to help each other. When I first joined this journey I was scared, beyond terrified. The journey hasn't finished but I think it's important to help and give back to help others who are thrown into this. Noone has chosen to have cc. But we have chosen to be HERE.
You are all fantastic and I am proud of how well everyone is doing in this shit situation. Be strong, ladies!