Latest update. It's been a while and I'm pleased to say it's all pretty good news so far. Mum completed both chemo and radiotherapy just before christmas. She has had a JEG fitted to feed food directly into her intestines (after a couple of failed attempts to fit a PEG), so she has not been eating since November, She had a meeting with her consultant in January who examined her throat and said there were no visible nodes so she just needed to go back once a month for the next year. She also kept her hair which was a bonus.

The only setback has been that even though the treatment finished months ago she has still not been able to resume eating or drinking, After a couple of x-rays with barium meals they discovered that her gullet was very constricted, which could be caused either by scar tissue, swelling or the tumour returning, They took her back in a couple of weeks ago for a more detailed exploration under a general anaesthetic during which they also planned to try and dilate her throat. Unfortunately the throat was so tight (1.5 - 2 inches that has almost completely closed over) they were unable to do anything other than have a good look around. Thankfully, there was still no evidence of the cancer and the surgeon told her that the swelling is a result of the radiotherapy,

Mum goes back into hospital for major surgery tomorrow to widen her throat and has been told she will be kept in for at least 2-3 weeks. She doesn't want to know any details so I have no idea what this operation entails. She has managed to maintain her PMA and is keeping focussed on the future and her dream to maybe eat some fish and chips one day!!

I've found it really therapeutic to keep a record like this of mum's progress and hope that others reading it may take some comfort/reassurance that none of us are going through these situations alone. There is always someone who will have been through a similar experience.

Hi susiebird,

I've just been reading your posts and wanted to send my best wishes for your mum's surgery. My dad had surgery 8 weeks ago to remove a tumour from his esophagus. You are right none of us are going through this alone. I also really liked the quote you wrote "live for today and tomorrow will look after itself"

  one other thing is where you said your mums throat tightened and wouldn't let food pass, my dads throat was the same at one point and he had a 'stent' fitted and managed to eat certain things after that. 

Best wishes to you and your mum and tell your mum when the time comes to splash plenty of vinegar on those fish and chips !!! xx

Shane

It's been a long time since I looked on here, mum has been doing so well.  After her chemo and radiotherapy she was told there was no sign of the cancer. She had to have an op to stretch scar tissue in her throat which was successful and she had returned to a fairly 'normal' life.  She went back into hospital 3 weeks ago for another stretching op and sadly the surgeon found another 'big' tumour. What's most upsetting is that they gave her a barium meal and xray the week before and didn't see (or mention) anything.  She's had another Peg fitted and we are still waiting for all her test results. My dad is falling to pieces, on the edge of a nervous breakdown.  He can't cry and is suffering from acute anxiety. He's worrying about anything and everything but what's most important. And just to really compound their worries, dad has just found a lump in his testicles. He's off to hospital for his own tests tomorrow.  Can life get any worse at the moment?

Thank you for your kind words Shane, I do hope that everything is going well for your dad.

Hi Susie

I too had a esophageal/tuma/squamous (although not as cruel as yuor'e mum's) last july and I attented the Sheffield cancer hosiptal for what the consultant described as 'radical treatment' this ment 4 x 5 days of chemo 24/7 followed by 25 sessions of radiopherapy thank God the results seem good and I now see the consultant every 3 months.

I know how scared I was but tell mum she has to keep posative, cancer is treatable and curable, I too had every different types of scans and exrays plus 4 endoscapies I too had touble swallowing but after trying 4 different drugs I have found one (Pantoprazole) that works for me its not a cheap drug and I wonder why I wasn't given this drug months ago.

So keep posative I know what you are going through Iv'e been there and got the 't' shirt.

I will pray for your mum.

George.

Thank you for sharing your experiences with me George. Mum's treatment first time round sounds like what you've had. She's trying to stay positive but it's dad that's bringing her down at the moment. We took him to the dr yesterday and he's been put on antidepressants and also beta blockers to stop him shaking etc. I'm praying they kick in before too long because he needs to be strong to support mum. We are hoping to get him into counselling today through the Macmillan Centre but the Dr has already admitted that dad may not be ready to talk.

Sometimes you don't realise how much cancer affects the rest of the family. My brother lives with our parents so he's dealing with it every day. I live further away so come down when I can, but it's frustrating that I can't do more.

Will update again in the next few days once mum's seen her consultant and we know what we're dealing with.

Hi Susie,

Sorry to hear that it is back again, but I guess your Mum was half expecting it if her oncologist was anything like mine. My recent relatively good news was tempered, as always, with "it will grow again, eventually".

It sounds as if your Dad is going through the mill too, with his worries displaced onto other things. I hope he gets access to some counselling too and gets some benefit from it.

We sometimes for get how much this affects our loved ones. My wife is recovering from a massive brain haemmorage she had last year. I've often been worried more about that than my own condition, possibly because I have some control over the cancer (if only choosing whether or not to go onto chemo, which I did) but none at all over hers and can only hope that she recovers after her operation and radio-therapy.

I hope the results aren't as bad as you fear.

Dave

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Ok, we didn't get the news we were hoping for.  Mum's been told that the new tumour is too big to operate on.  They could offer more chemo but it would just delay things, not shrink or get rid of it. So mum has decide to decline it and make the most of whatever time she has left. She's been told it is a matter of months.

What's even harder to deal with at the moment is dad's reaction. Ever since mum got the news on Thursday, dad has sunk deeper and deeper into depression and anxiety.  It reached the stage yesterday where he was taken to hospital in an ambulance because he kept banging his head against the doorframe.  He has all these emotions swirling around in his head and doesn't know how to deal with them. 

It seems that although we're told there's support out there, nobody seems in any rush to provide it. Mum tried ringing the palliative care service yesterday who have already arranged to come out on Thursday, but because she's not 'far enough into their system' they refused to offer any help.

Every day I have to bully/persuade/nag dad to do even the most basic things like get washed, dressed and eat.  But neither I nor my brother can stay off work indefinitely to be there 24/7.

The saddest thing is that it should be mum that should be our focus right now but she's trying to support dad instead. It's heartbreaking to watch. And we're all thinking how much quality time are we going to lose with mum whilst all the attention is on dad?

I know there's no magic wand to make things better but I know dad will regret this period of 'wasted' opportunity to make more happy memories before it's too late.

Hi Susie,

What sad news.

You said in an earlier post that your Dad's already on anti-depressants and beta-blockers - I'm guessing you've already updated his GP.

I would hate to be in your predicament (or your Mum's) but I can only agree that unless your Dad somehow gets sorted out your Mum's next few months are going to be spent looking after him which seems so unfair.

Is your Mum well enough to go off for a break on her own? Not easy I know, but it may be that is what they both need - at least for a week or two - to give Mum time to chill out and Dad time to come to terms with this latest development.

Good luck and please stay in touch.

Dave

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Hi Dave,

I've been reading back through my last couple of posts and have realised I never mentioned that my dad has had his own scare. He found a lump on one of his testicles a couple of weeks ago which will have also contributed to his fragile state of mind.  He kept saying he wasn't worried about it but how could he not be? He saw a consultant today who's told him that he's 99% sure it's a cyst. We thought such good news might have helped to buoy him up a bit but it hasn't. 

He's had a visit from one of our community psychiatric nurses today who had a long chat with him. The upshot is he's agreed to look at things in a different way for the next week and make more of an effort to put mum first.  The nurse made it quite clear to him that if he doesn't show signs of improvement soon he could be facing a hospital admission of at least a couple of weeks.  He is adamant he won't leave mum. Hopefully the threat of being forcibly separated from her will give him the push he needs to make the effort to get better.

So a holiday for mum is out of the question. Plus she is on a nightly 10hr feed through her stomach tube (RIG) which makes her less mobile as it would mean taking the pump, food bags, tubes, commode etc away with her.

Crikey, bad news never seems to come in ones does it?

No wonder your Dad's been worried - at least he has that distraction out of the way now he knows it was a cyst..

It sounds like his CPN is on the ball though.

Hope you're coping OK and getting the emotional and practical support you need.

Best wishes

Dave

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