My dad

Hi Jayne 

I am sorry to hear about your dads diagnosis, i am afraid there’s not much information I can provide you as I am in a similar position to you. My dad was diagnosed with oesophageal cancer 5 weeks ago & we are now waiting for a PET scan so still early days in all of this - but I totally appreciate your thoughts on it seeming such a long time before starting treatment. We did raise it this week when my dad finally got to speak with nurse & she said this stage can often take time but the PET scan was the final step really & then he would meet with someone to discuss treatment and from then it should move quite quickly in terms of treatment. She was saying treatment has progressed a lot, and they now find it better to spend longer on actually diagnosing it & getting a full picture so they can then do specific targeted treatment. The wait is so hard though isn’t it. 

In terms of looking online  - I was exactly the same researching it all & trying to pre-empt the next steps etc, but we have been told to ignore the prognosis that you see online as cancer treatment has come on a long way in the last few years. A lot of the data online dates back a good few years (over 5 years) & is based on averages too - so it doesn’t really give you an accurate picture. 

That’s good your dad is still managing to eat though & that you are close by for support. I am finding the same with my dad - he is becoming more up and down & I put a brave face on it in front of it - but behind closed doors it’s a different story. I have found this group really supportive & have been keeping in touch with friends which has been helpful. Hopefully you will have some support around you too. I know you mentioned you feel helpless- it’s so hard to know how to help but I am sure your dad knows you are there for him when he needs your support. 

Really hoping you soon get some answers and that your dad can soon start treatment. Wishing him and you, all the very best & keep us posted. X 

Hello Jayne,

Very sorry about hearing this.

But Hope86 is absolutely spot on, DO NOT read internet info. Everyone is different, the info may be out of date, cancer treatments continue to evolve constantly. The internet can be very scary, especially if the site is written by what I call pseudo doctors.

They will be sure that your dad is strong enough for chemo too. Hope is also correct saying they can target a specific area, usually with radiotherapy. So please try not to worry. Ultrasound you will know all about with 2 young children. Try to be positive, easy for me to say I know.

And the speed of the whole diagnosis, treatment, & prognosis is fast. My mum was diagnosed, had all her scans, & finished her 20 days of treatment  all within 2.5 months. And all the time we had support from every department. You'll have a liaison nurse who will be your dads case worker. They collate all results, supply med's & take some weight off you if you are really worried. They will keep you informed about everything.

I wish you & your dad a full recovery, & please ask any questions on this forum because there are people who have been through what your dad has. It's a great source of info.

Best wishes to both of you,

regards,

Graeme.

Thank you for your response. Massively helps control the millions of thoughts in my head.

all of what you said is absolutely right.

the waiting is the worst isn’t it. 

I hope your results come back with good news.

x

Hi Jayne,

I can empathise with all that you're saying. Watching someone you love going through this is VERY difficult. My amazing brother starts his chemo on Monday which makes it all so much more real to me. Because he has no symptoms and feels really well (he's been for a 10 mile walk today), I kept thinking there must be some mistake. Then I'd read all the stuff online, especially about the prognosis for people with this type of cancer, and this would reinforce my feelings that none of it applied to my beloved brother. However, with his chemo looming large, I feel terrified. I spent most of yesterday crying but today I'm thinking, "Get a grip. If Rob can go through all of what lies ahead then you can deal with the facts of it." His surgeon has told him there is no evidence of secondaries and that his cancer is "doable."

I will continue to do little things to bring him pleasure, like buying him some audio tapes and Mars bars and make sure that I show him how precious he is to me. One thing I'm learning is that ten people can have the same kind of cancer and there will be ten different responses to the diagnosis. I wish the very best outcome for your Dad and I wish you more happy times with him. I'm sending you a big hug.