Trial

Hi LizzieJ 
So sorry to hear you’re feeling this way .I would suggest having a chat with your GP or specialist nurse  regarding the way you feel ..and also for  some advice about the steroids …I’m sure they could help you …Although my husband had a different treatment to yours he  said exactly the same thing regarding the treatment being worse than the disease ..I found that hard to understand at first but I totally get it now ..It’s certainly caused him some ongoing issues too !! 

I know the strain it can put on a partner /spouse too ..Have you anyone that could maybe allow your husband to have a break now and again?   Just to give him some time to himself .  I found this really helped me when everything seemed  to be a strain ..It would give him something to look forward to and help him to recharge his batteries! .Just a few hours a week does help ..

Fortunately we seem to be on the better side now albeit with ongoing issues to deal with but I can still remember the early post treatment days vividly …..It’s a tough road to be on that’s for sure ! 

Hope your situation improves for you with  help and advice from your medical team .

regards J 

Hi LizzieJ

i wasn’t offered a trail so it’s interesting to hear you have been.  I agree with what everything JPM has said.  

Going the traditional treatment is also hard, I finished my treatment in March but don’t yet feel back to how I was pre treatment.  Although I am keeping active it’s not unusual for me to fall asleep in the day, I have stomach ache, feel nauseous and have diarrhoea most days. However when I look back it is getting better and I have come a long way.  I just think whatever treatment you have it takes a big toll on the body and takes a long time to get over it.

My way of coping when it’s bad is to remind myself it will pass, I know it’s sounds a bit simple but it really helps me. I think it’s very hard on partners and families, my husband ended up having a panic attack but reached out to our GP who really helped him.

I hope your situation improves soon and you get the help you need.

Take care 

Thank you for your support. Fortunately my husband has good friends who spend time with him which is good. I'm glad to hear that things do eventually get easier, although I realise this is a very long road, and the not knowing yet whether the treatment has been successful doesn't help. I guess time will tell.

Thank you for your encouragement. I try to tell myself the same thing - it will pass - but it just seems to be taking a long time, and a good - or better - day is so often followed by a bad one.  It's a real roller coaster, but I guess I should try to see the bigger picture.

My treatment finished in April and since then I’ve felt awful.  However, I’m alive so that’s a plus.  I’m lucky as I only had a small T and didn’t need any chemotherapy or radiation etc, I just had the oesophagectomy which is major and sorry but really horrible.  I’m managing and hope that I will have good quality of life in about 12 months.  

My dad is on the trial but he’s unsure if he ended up euthanasia higher dose or not - tbh the communication from the hospital has been absolutely shocking and as we often aren’t allowed in with him we’re relyin on his understanding everything while feeling really unwell!

he finished his radio last Friday - he seems to have missed his last week of chemo due to his platelets being low - since he’s finished he’s been more poorly than ever and really struggling! For the first time he’d having to use his feeding tube as he’s really struggling to eat anything but anything he’s putting in the feeding tube he is bringing straight back up!

csn I ask you once you had completed your treatment what were the next steps? He seems to think he will get a scan in 3 weeks to asses the size of the cancer but when I read the initial trial material I’m sure it said they don’t scan until 3 months after treatment!

although he’s clearly feeling very poorly I do also think he’s struggling mentally with the worry of what if the treatment hasn’t worked after he opted to do the trial over the operation so I was just wondering as your further on what your results and next steps have been?

thanks x

I'm so sorry to hear you Dad is having such a rough time. I would certainly be very assertive at the hospital when attending appointments - I have no problem with either my husband, daughter or both coming with me, and another pair of ears is always good.  The trial team here have been brilliantly supportive.

You are right about the scan.  I finished my treatment in the middle of June, and only had the scan yesterday.  Next week I have to have an endoscopy, by which time I should know how effective the treatment has been.  The side effects, especially fatigue - dire - and discomfort are continuing though, and I do sometimes wonder if the trial was a good idea.

Waiting is always hard, so I do hope your Dad can get some reassurance from the medical team.

Thanks so much for your reply! I’ve spoken to his nurse today and she has clarified that he has got himself confused and that the appointment in 2 weeks is a check in not a scan! 

can I ask if you have a feeding tube fitted during treatment? They made him have one at the start and he’s now started to need it as is unable to swallow (he finished treatment last Friday) - was just wondering if and when they will remove it as he is desperate to get back in the hot tub in the garden bless him! 

fingers crossed for your results - I would be really intrigued to hear how you get on if your comfortable sharing with me as you seem to be 3 months ahead of him and it’s so helpful understanding what is to come!

really hope you get some respite from your symptoms soon x

Thank you for your kind thoughts.  I am quite happy to share my experiences with you.  I have been on a real roller coaster road with the side effects of the chemoradiation, but feel I am actually one of the lucky ones because I haven't had to have a feeding tube.  Swallowing is uncomfortable and painful, and I am limited to soft foods because of the discomfort, but I can swallow.  I don't understand why your Dad had to have the tube before eating became difficult.  I guess they won't remove it until they are sure he can eat enough to keep his weight steady.  I did lose weight, but am maintaining now with the help of specially fortified drinks. They have been instrumental in keeping the tube away I think!  I'm sorry I can't answer your question, but it's good that you're talking to the nurse - she might have a better idea.  I hope your Dad can get back to his hot tub soon - that must be a great stress reliever.