Dads journey

Hi, 

I'm Sorry I cant offer any advice as I'm in exactly the same situation as you. But thought it might help you to know someone else knows actually how you are feeling right now.

I took my dad to hospital to get his PET scan results on wedsnesday and we were hit by the news it's spread. So the same as your father, not curable but he has been offered Chemo too.

He was kept in hospital on wednesday  as he couldn't eat or drink enough and to manage his pain. I haven't been able to see him since, which is awful. 

He is due to have a stent fitted on Monday then I hope to bring him home and start chemo in the near future. 

It's scary isn't it!! And happened all so very  fast. 

But just thought I'd let you know, I'm about to embark on the samel journey. So I understand, as do lots of other  people on this site how you are feeling. 

Take care, Stay strong & look after yourself too. 

xx

Hi,

I’m so sorry about your dad, no one can prepare you for the emotional rollercoaster. My dad has massively benefited from having the stent fitted and I hope your father also finds having one beneficial too.

As awful as it is it’s comforting to know we have somewhere to come and chat! Keep me posted on your fathers journey :) 

Everyday is a new day xx 

Hi Loz90 and Star007

I am really sorry to hear that both of your Dad's have recently been diagnosed with OC, like you I came upon this site (back in May 20), my husband had just been diagnosed with Stage 4 Oesophageal Cancer with secondaries in his lung, liver and lymph nodes, T3N3M1 GOJ, incurable, but treatable. 

No Surgery, No Radiotherapy but Chemo offered, we were also told that he was HER2 negative so was not suitable for immunotherapy treatment.

Like Loz90 I was looking for some positive stories, I learnt that there were a couple of different types of tumours, several different treatment styles and that what you are sometimes told in the beginning is not the whole story. I started writing a blog, which starts Here and I hope that you will both be able to find some positivity, some support with regards how Chemo is working for Dal and some food ideas.

We are all different, we react different, we process different, but one thing is for sure in my opinion, we find ourselves on a roller-coaster of emotion, and uncertainty. I hope as both of you progress further on the journey's you are on with your Dad's you will remember that we are here for you.

If you would like to take a look at the following forums

Family and Friends

Supporting someone with incurable cancer

you may find further support.

Here if you need to chat.

Take care of you too

Lowe'

Hi Loz, so sorry to hear about your Dad.  As I read your story I couldn't believe how similar it was to mine so I thought I would reply with my experiences thus far - my dad was diagnosed with stage 4 oesophageal cancer in late August, not curable, not operable but he was offered palliative chemotherapy which started back in October.  He also had to have a stent fitted having lost 3.5stone during the first lockdown (and didn't tell me!) which is when the initial symptoms started.  Once he had the stent fitted and was able to keep food down he was ready for chemo and is actually on his last treatment as we speak.  He was offered 6 treatments, one every 3 weeks and has been an absolute rock star throughout although after each treatment the recovery period has been slightly longer.  The steroids that he has around chemo days don't agree with him very much.  After his first chemo they did an echocardiogram to check on his heart and discovered that he had atrial fibrillation which meant he also wasn't able to have the Herceptin any longer as part of the chemo and has to take a bisoprolol each day now too to keep his heartrate stable, it also reduced the time for the chemo from 7/7.5hours down to about 4.5/5 hours. 

In terms of how he is day-to-day - tired most of the time and usually horizontal on the sofa each time I see him, some days he doesn't have the energy to even sit up bless him.  We have had a couple of instances where his blood pressure has dropped so low we've had to call 111 and both times he spent the day in triage being given fluids - we think we've finally got through to him that he needs to keep his fluid intake up otherwise he will be back in an ambulance, I now take his blood pressure every couple of days too as a log at home.  He has been lucky enough not to lose his hair on his head but has lost most body hair and is skin is very blotchy and his skin is very thin, the slightest graze against his skin and he bleeds - taking a plaster off isn't great either as the skin peels off with the plaster.  He has around 3-4 ensure drinks per day and snacks/grazes throughout the day, making the most of being told he can eat all the things that are high calorific value and in fact, over the past 2months he has gained a few lbs which is amazing. His skin is itchy so the hospital prescribed some cream which is great and does the job!  He is still only taking paracetamol for pain relief as he wont take codeine as it bungs him up.  

After his first round he had a CT scan and the results were great, the mass itself had stayed the same but all the lymph nodes affected had reduced in size, one had gone from 7cms to 2cms - the oncologist was amazed and pleased she had agreed to put him forward for chemo as initially, given the stage and his weakness they weren't sure.  

I do feel that the chemo has given us some extra time, the prognosis at time of diagnosis was 6months approx and they said with chemo, if it worked we might get an extra couple of months but that dad would be closely monitored before, during and after the 6 chemo treatments to ensure the balance was right. In all honesty, I don't think he would have coped with any more treatments but I am thankful he has had them thus far.

Trips to the hospital were a little bit of dad/daughter time - not sure how I will be feeling as i drive home later today after I've picked him up knowing that it will be the last time.  He will still have further CT scans but unsure yet how often etc.

So in the past 6months I've managed to see him open his xmas presents, reach 75 and open his birthday presents which has been wonderful, the next goal will be that he manages to see some of the new F1 season.

Keep in touch, let me know how things go wont you x x 

Ali

Hi Loz

Thank you. 

Dad had his stent fitted today so fingers crossed. 

One day at a time! 

Chemo to face next. I hope your dad is doing OK. 

Take care xx

Hi Star007,

Tha is great news, hope he is recovering well and in a few days time he is seeing the benefits. 

My dad is due at Christie’s tomorrow, hopefully he is well enough to start chemo I will keep you updated. 

Please keep me posted on your dads journey  :)

xx

Hi Lowe, 

Thank you for taking the time to reply. Please keep in touch. I have read your blog thank you for continuing to update this it’s nice to read Dal’s journey and how well he is doing. 

My dad finds out tomorrow if he can start chemotherapy, my mum isn’t having a great day today I think she’s struggling to appear “ok” all the time when deep down she’s hurting. My dad has gone from a bubbly character to a shadow of himself in only a matter of weeks he just doesn’t seem interested in anything, not sure if this is normal at the beginning? 

xx

Hi Coco,

Thanks for taking the time to reply and glad your dad is seeing some progress with both his stent and chemotherapy, it’s really comforting to read how other people are progressing in this journey! 

How is your dad in himself? I feel like mine has lost all interest even just normal  conversation is hard at the moment, I’m not sure if this is the cancer on his mind of wether it’s the struggles of covid and not seeing each other properly! I try to be positive when I speak to him but it’s so disheartening sometimes when he sounds so fed up. 

He has an appointment tomorrow to find out if he can start his chemotherapy so I will keep you posted! 

Here  if you ever need to chat :) xx

Hi Loz,

He too is distant and lost interest in everything, he doesn't know what he wants to eat, what he wants to drink, whether he wants to watch TV.  He spends all day and evening laying on the sofa tossing and turning and dozing mainly.  I try and keep spirits up when I visit but most of the time he doesn't want to talk so I just hope being there is good enough.  He has the very odd good day when he does have a little bit of banter but he is just so tired and weak that evening sitting up tires him out very quickly.  He is still managing the stairs somehow, stubbornness most likely and although there is a hospital bed in the lounge for when he needs it he's probably laid on it 3 times in 6months!  I've suggested taking him for a walk in his wheelchair around where they live but he doesn't want the neighbours to see him so he only leaves the house for hospital appointments. He wont take codeine so is currently only taking paracetamol for the pain.  Dads last chemo was yesterday, the recovery period for him seemed to get longer with each treatment so I don't think he could have coped if he'd any more scheduled. 

Good luck with your Dad let me know how he gets on x x 

Ali

Hi Loz90 and Star007

So sorry to hear about both your dad's.My dad was diagnosed in December.He was only 5 and half stone when admitted so the big concern was to get him on the ng tube but now has the jej tube which is helping him out on weight up to 6 stone 3.

they won't be operating and no chemo being offered at the minute.Theres talk of a stent going in as he's unable to eat just sips if juice or water.

Another pet scan on Friday to see why he had a bleed in the feeding tube last week.

He's very tired but much more positive than us.

Thank you for this site for people understanding what it's like.

Thanks love Kaz x