Quick Change of Direction

Hello JordBri,

I'm very sorry to hear this & I realise how you must feel.

So, ok they've found the tumour has grown & changed shape. 

I think what they want to do is like my dad had done 15 years ago, the Ivor Lewis surgery. From memory your dad would have a few sessions of chemo to try & shrink the tumour & destroy any close rogue cells. I won't pull any punches here, chemo is horrible but it's absolutely essential.

So with the above done, they would look via scans / endoscopic camera to ascertain the size of the tumour. At the very least it should have stopped growing, but preferably it may have shrunk. 

Next step is surgery. things have advanced since my dads surgery to the point that they can now do keyhole surgery. The original Ivor Lewis procedure is 8 or 9 hours long & they need to get to the tumour which requires deflating a lung, moving or removing 1 or 2 ribs, incisions in the neck, the chest, the armpit & the side of the abdomen. 

But as you say quite correctly, the idea is they cut out a portion of the oesophagus with the tumour, they then pull the stomach up to meet the now shortened oesophagus & they attach the stomach to the unaffected part of the gullet. This in turn makes the stomach stretch & therefore it won't have the volume of a healthy persons stomach. 

But, do not worry here, your dad will still be able to eat, only he will need less food as the stomach is smaller.

So with the surgery completed, another few sessions of chemo are given to make sure the tumour won't have sent rogue cells elsewhere, essentially any cancerous cells will be destroyed.

Now remember that the op lasted 8 to 9 hours for my dad. The keyhole method doesn't require all the incisions & deflating lungs, etc. I think it's about 2 hours, but do ask the oncology department for the correct information to be sure.

After the last session of chemo, scans & endoscopic evaluations will be done, but this would take place a few weeks later so if the tumour hasn't moved to the now healthy oesophagus, this is a success. There tends to be a few scans & endoscopic tests over a set period, just to be sure. 

Also, after the surgery, expect your dad to remain in hospital for a few days, for observation only. And it may be that your dad has to stay in hospital during his chemo as it saves you taking dad every day over & over again. You are allowed to visit twice a day, & because it's cancer related, you may not have to pay a parking cost. My advice is don't visit at every available opportunity, this will exhaust you. He will be in good hands, so just phone his ward instead.

After this whole process is done, dad can come home. Please be very aware that chemo causes nasty side effects, which will decrease over time. My dad actually said the chemo was worse than the surgery. But this is normal, just be there to help your dad when he's having a bad day because he will, but not everyday thankfully.

I will not go into diabetes as I have no experience & therefore I wouldn't be able to advise on that side.

Now the good part, my dad had only what I have described above, & it worked, he was still in remission after five years & no longer had to attend hospital for evaluations. And the cancer never returned.

My hope is your dad can have the much less invasive keyhole method, I'm sure his recovery will be quicker due to this.

I would also pester the chemo / radiotherapy centre asking when they intend to start the chemo. Be nice & say how very worried you are about the wait for the chemo. They will have a plan of treatment already for your dad, so ask when it's going to begin. Tell them your deep concern that it  worries you that during the wait the tumour will grow even more. I have faith that they know their procedures, after all they are specialists who do this day in, day out. STILL BE  A  PEST. You want to know what's happening, how long the wait will be, & that it's normal & you need not worry about this wait. Waiting really causes concern & worry. Phone every other day, I would, make them see this is pure turmoil for your mind.

Please remember how far techniques have come in 15 years, & don't Google sites describing the Ivor Lewis surgery, it's something that will add to your worries. And you may get duff info. from a person who never had any experience. 

One last very good thing to do. Get a referral from your GP or the hospital for an assigned hospice nurse to visit you at home. They have so much knowledge & they will make you feel less worried. They will have access to departments, GP's & so forth. It would truly be a weight off your shoulders. It's the best thing we ever did. Please make this a priority for your own health too, otherwise you'll feel helpless & all alone. So get this ball rolling asap, it'll be a real help for both of you.

I did notice you hadn't had a response, & I realise that's frustrating. Now you have my knowledge & I really hope it helps, even a little.

Hospice nurse, constant phoning to the hospital, you need this.

I wish you the very best, both of you,

Gray.

Hi Gray,

Thank you so much for the time and effort you put into this message. I really appreciate all the advice and reassurance. I am sorry that you've had to experience this with your dad but I am pleased that his treatment was such a success. 

Thankfully, we have a date for the exploratory surgery now and a rough estimate of when the chemo will start.

I am badgering!! 

All the best,

Jord

Hi Jord

How are things with Dad ?