EOX chemo

Hi , I'm sorry to hear how much you're going through. I can understand why you would be 'considering just walking away'. My husband is not having that treatment so I can't be of any help, but I didn't want to leave your post unanswered. Quality of life is so important, but the decision has to be yours. What did your specialist nurse say?

Hi LoobyLou, I dont know if I even have a specialist nurse!

My experience of the whole system has been appalling. I wont bore with details but being told you have inoperable cancer by a doctor who took less than 60 seconds to do it before asking me to wait outside whilst he rang a colleague to arrange palliative treatment will give you an idea. Information is inaccurate or unobtainable from any of the advertised sources. Most of my issues with chemo are down to nurses rushing to infuse drugs by syringe because they are going to be late meeting kids from school!!!. All sounds very negative and i could add much more but people need to realise for all the polished leaflets the system here in my view is just a conveyor belt.

Hi , that's dreadful. I'd suggest you contact PALS in the morning at your hospital and explain the situation and ask for their assistance....firmly. It shouldn't be the way you describe. Please let me know how you get on.

Love and hugs,

My husband finished his 6 cycles in February 2020 and they completely "wiped him out". He is worse now than when he underwent his surgery at the end of July last year to remove the tumour in his oesophagus and part of his stomach.

At the time he was determined to reach the end of the 6 cycles but because he now feels so poorly he is questioning that decision. He has had multiple side effects and is currently struggling with severe weight loss, achy feeling all over, breathlessness and a racing heart.

Unfortunately all decisions are personal and only you can make that decision to walk away.

I'm afraid that the cycle doesn't seem to have helped anyway as his cancer has now come back within the year, in his throat, and we currently await next steps.

Hi FloraB,

I came across your post this evening and I could of written it myself. 

My husband had 6 cycles of ecx chemo which ended in January 2020. Like your husband he was determined to get to the end of it. His cancer was too advanced for operation  but the chemo was (and supposedly did) to send the tumour to sleep- at what cost though?  He also experienced multiple side effects most of which he still has - including no appetite or interest in food which has resulted in massive weightloss, total exhaustion can't go upstairs without having to lie down and rest, insomnia even after taking sleeping tablets.

I felt so positive at the beginning of the treatment, it gave us a lifeline and a glimmer of hope. Now I just feel that hes been cheated out of the last 3 months as since finishing the chemo he's just gone downhill.

I feel so much empathy with you and your husband at this dreadful time and you like us are now in limbo waiting to see what happens next or if we're going to offered anything else apart from a tablet to counteract the side effects of the other tablets which aren't really helping anyway.

I hope you have a peaceful weekend and that you do get some positive news on the next steps

Dear Lizzy-K

Thank you so much for taking the time to reply. This is the first post I've ever done since my husband was diagnosed in March 2019. I've never been one to share how I've been feeling & my husband is a very private man.

I too feel your feelings of being cheated as he wishes he had stuck to 4 cycles but he felt he should continue to give himself the best chance but we had no clue it would come back so quickly. 

Look after yourself & try to stay strong.

Dear FloraB, 

Thank you for sharing your thoughts with me, its comforting to know that we are are not alone in this situation, but equally I feel so sad for you both.

Again you have summed up the exact same situation as us. My husband is also a very private man and after cycle 4 was still feeling ok and reasonably active. He's now a shadow of what he was and gone from being physically active all day to struggling to walk more than a few feet at a time. How old is your husband,  mine is 62 but has up to now always been fitter than most.

 I appreciate that the oncologists are under a huge amount of pressure and do a marvellous job but surely there is more information they could share and as the treatment goes on there must be a point where quality of life is more important than sticking to the standard.

My husband has said that he feels like it's been a bit of an experiment to see how much chemo they could give before it broke him. After chemo 4 he started to go downhill and although on the surface they appeared to be listening we don't feel like they truly were. All they did was throw more and more medication at him.

I hope you have a peaceful weekend and can do some nice things together.

Take care and you look after yourself too, maybe there's a small miracle around the corner for all 4 of us x

Hi LizzyK, No you are not alone and I suspect there are many more. The lack of contact with key players like oncologists and the void that is information, for me only add to the difficulty in making a rational and informed decision. I had a CT scan 8 days ago but no intimation of an appointment to discuss the result which is key to my final choice. Due to corona the chemo centre now do not fill in the log book of treatment so I cannot even see my blood results. This whole process for all the hype and fancy promises is in my experience so far just a financially constrained tick box exercise for NHS year end reports. Sorry to sound bitter or negative but nothing is giving cause to change my view. I wish you and your husband every best wish for something good to enter your lives.Take Care.

Hi PoppiesG, 

It is difficult to make any decisions in normal circumstances but in the current corona crisis even worse.  He can get printed copy of blood results  but he has to ask, and that is only way he knows if he has to take the anti-bleed tablets "take as and when required" is what the label says!!

The only thing I can say to you is sometimes your gut instinct is the one to follow, as the patient you know your body best. My husband wishes he could turn back time and given the circumstances he is now in  he'd have quit the chemo after cycle 4. Tumour was asleep after cycle 3 and now its weeping who knows if the chemo made this happen or if it was going to happen anyway.

Have you tried asking for a second opinion or change of consultant then you may get some proper advice and support. 

I think we all have bitter and negative thoughts, thats human nature and being faced with a situation which is beyond our control without any proper answers.

Take care keep safe .

Hi LizzyK

You right in all you say, I am in the process of either getting a different oncologist to the locum the centre assigned me and may even exercise my right to be treated at a different hospital even if it means travel. 

Thank you and again please know you are not alone and are in many peoples toughts and prayers.