Just been given 6 months

Hi Jack,

So sorry to hear that, having gone through so much already, you have been given such devastating news. It is the dread that always lives at the back of our minds. I hope that you are able to find a trial which will have greater success or at least give you more time. 

Hi Jack

I’m so sorry to read this, what a horrible shock for you and the family. I know it doesn’t help but you’re not alone as my husband is being treated for a recurrence and whilst initially the chemotherapy kept the disease stable for a few months it’s now spread along the outside lining of the lungs and the tumour that has regrown at the new join has got bigger. He’s had a break from chemo for 6 weeks and he’ll be starting a new drug next week. He’s already very tired and thin so we’re both a bit worried about how he will cope but he wants to give it a go. He’s been given 12 months with treatment if it works and 3-6 months without! 
There are more details of our ‘journey’ on my profile.

Sending you lots of strength at this difficult time.

Jane x

Hi cool blue

Thank you for your message.

Im so undecided at the moment as the consultant said 6 months with treatment. This leaves me with the dilemma of continuing with treatment feeling absolutely awful or deciding to switch everything off.

As you can tell I’m all over place and contradicting myself.

It’s the dread , like you say,and the waiting, whether it’s the results or for the inevitable.

I hope whatever is challenging you in your life isn’t bringing you too much pain an you have support x

Hi JaneD

Thank you for your reply. 

I’m sorry to hear about your husband, it’s just such an awful existence whether you’re on treatment or not especially when you’re given a time as the worry and what if’s takeover your mind.

If I’m honest I’m getting to the stage ,after 2 years of treatment, that I need a break for at least a month. My consultant told me that it’s time to get affairs in order which I can’t do whilst sick and don’t want to leave it all to my wife who I also exhausted emotionally but continues somehow to be my rock.

So I suppose the big question is do I ever go back on treatment as the chemo and immunotherapy have both failed or do I accept my fate and at least be myself?

I’ve got the hospice nurse visiting me on Monday to discuss my options there, I know this sounds like I’m giving up but I’m just exhausted from all the treatment and bad news.

I do hope you’re husband gets on better with his new drug.

wishing you all the very best x

Thanks Jack for your kind thoughts. Taking a break seems very sensible and thinking through what’s best (rock and hard place comes to mind!). We’ve done a bit of that too and I’m half prepared for Paul to start the chemo and then stop because it’s too much to cope with after all he’s been through. 
I’m concerned about how tired he is before he’s restarted but we’ll see how it goes. 
keep in touch and all the best to you too. 

Jane x

Hi Jane. I hope you and Paul are doing ok considering everything.

I’ve just had a look at your profile as suggested. I can relate to so much of Paul’s journey. I think the slow decline and suddenly facing the end of things or at least having to consider them is the most relevant for me.

I’ve just started to do videos to my wife and 2 boys. The idea is that they can watch them at certain times in their lives. So when one finishes school or graduates from uni, that type of thing. 

We’ve also been looking at the Will too which is slow and painful emotionally but somehow comforting at the same time. 

How is Paul getting on with his new drug? Or is it next week??

I started my new chemo yesterday so I’m feeling a bit rough. I wasn’t really given the opportunity of a break in the end as the cancer is so aggressive and unpredictable with it. I think I mentioned I was given 4 months without treatment but this could change quickly apparently without chemo. So it’s chemo first and hopefully it’ll work giving me 6 months plus maybe.

The cancer is now in my right lung and now my colon, apologies if I’ve already said this,chemo brain is difficult and I forget easily etc I take it Paul is similar at times.

I have the hospice nurses visiting me more now, it’s a tough milestone but a necessary one as they really take care of all your needs both emotionally and medically where possible. Not sure if you have this type of service near you but maybe worth considering if you haven’t already.

Anyway that’s all for now, keep in touch.

Jack x

Hi,

This sounds like a shit situation, and I am profoundly sorry to read it. You are in my thoughts.

All I can offer is to hope and suggest that you try to make use of, and to value, every second you have left. (And, for sure, try to deal with anything - well, things like Wills, etc. - which might not already have been dealt with.) Oesophageal cancer is a horrible disease and, from my experience, the progression is very difficult to predict.

My own wife died of secondary oesophageal cancer two and half years ago. I hope and pray that better treatment - and, ideally, cures - for this disease are on the way soon.

Meanwhile, I send you my love and best wishes. Crack on, and and make every second count! None of us know what might happen tomorrow - we might be hit by a bus - so that's all any of us can do.

All the best.

I have just read your profile, which was very moving. So sorry that the 'cure' proved to be only temporary and I hope you are soldiering on and finding some happiness in life, as your wife wished you to do. xx

Hi Jack 

how are you doing with the chemo? Paul has had the first infusion of Irinotecan last week(I think that’s how you spell it!) and had the usual nausea on the day but then had been ok apart from that he’s so tired. The heat is definitely not helping.  He hasn’t been referred to the hospice yet as the current plan is 3 chemo sessions then scan and then 3 more if it’s working and he can tolerate it. 
The main concern at the moment is he’s not eating enough so is getting painfully thin and weak. He finds the fortisips etc really horrible to drink and they often make him feel sick or cause dumping syndrome. We’re going to talk to the oncologist about it on Monday. 
We’re both doing a lot of crying today for some reason, it seems to come and go which is just as well as neither of us want to spend the whole time feeling so miserable! 
 Jane x 

My heart goes out to you all and I can only send my love and wish you strength at this horrible time. One practical idea …… my husband also hates fortisips and similar. He is drinking a bottle of HUEL on most days as it is high protein and low sugar. He prefers the one with the slightly lower protein level. It has 400 calories per bottle. 
Geraldine xx