Hello.

Hi Ollie1

Am so sorry to hear about your mum. It is like you say an absolute rollercoaster, made even worse when they've told you it's operable then inoperable! I can imagine your emotions must be all over the place. 

My dad is still undergoing treatment and luckily was able to have surgery back in July. He's about to have his post op chemo in a couple of weeks.

Is your MDT meeting coming up soon? I would ask lots of questions. If your mum is able to increase her fitness levels, would surgery then be an option? I remember when my dad did his fitness tests he was borderline and I remember the surgeon told him that he was in the high risk category for surgery. He'd also had a heart attack 4 years prior, which added to the risk. However, I got dad out walking lots in preparation as recommended and my dad came through the surgery well (still recovering, but doing ok).  So I would certainly question things. You never know what can be achieved. 

I wish you and your mum all the very best going forward. Take care.

Hi so lovely to hear your dad doing well.

MDM Wednesday so hopefully we hear alittle more then.

I am going to write my questions down and ask.

• Bless her she is very frail I am unsure she can increase fitness levels really. However blew me away with her cycle test ! Her best effort. Very proud x

Wishing your dad all the best with is upcoming chemo. 

Take care x

Thank you so much. Yes definitely ask all the questions you can. I remember sitting in the room while my dad was doing the bike test. It looked very gruelling and I remember thinking how well I thought my dad had done ( being 71 and not having been on a bike for years!) I'm sure your mum did equally well under pressurised circumstances..

I really hope something positive comes out of your meeting on Wednesday. Do keep posting and let us know how things go with your mum. Take care x

Hi my mum is 73 next month. I can't remember the last time she sat on a bike.

It was so hard to watch but I was blown away by her determination. 

Then to receive she was not fit which I think both me and mum knew deep down any way was hard.

We see what Wednesday brings - she's quite tiny 47 kg and whilst she has put on some weight her weight is now static. Only able to have liquids. The nutritional supplements have been such a big help tho.

I worry moving forward about how to manage- currently work full time although employers have been marvellous thus far.

Do you mind me asking how long your dad was in hospital for after the op ?. You must be very proud of him.

Xx

I'm sure your mum did amazing but like you say to hear that she wasn't eligible for surgery still must've been hard to take...

My dad was in hospital for 9 days. I thought he did brilliantly coming through the op and then getting up with the physios twice a day. He showed real determination and yes I'm very proud of how he's battled through his treatment so far.

His weight is still an issue and he's on tube feeds alternate nights. This is going to be a very gradual process I realise. He also never feels hungry, so I have to try and get him eating as much as he can. He's had some issues swallowing lately and is going to have dilation to stretch his new oesophagus as the scar tissue has tightened during the healing process, making some foods difficult to eat.

I understand your concerns about your job. I've dropped down to working 3 days a week (I work in a school) so was off for 6 weeks over the summer right when dad had his op, so it worked out well and I was around all the time. I'm going to continue working part time until dad is through his treatment as I want to be there when I can.

It's difficult but we just take it day by day, am sure you do too. Sending much positivity and strength

Mdm today update.

They would like to admit mum for parental feeding in hospital to bring weight up as still considering op. Very confused as lung function deemed poor on fitness test. How will feeding improve damage lungs ? 

Staged at t3 n1 m0 .

Mum had made peace with not having op. Now very unsettled. We speak again to macmillan nurses as we need more detail.

How long would she be on ward. Does she need to reach a target weight, then there does not seem to be a firm yes it will go ahead.

It's so up and down. 

They mentioned pre op chemo too. 

So very hard x

Hi Ollie1 

I can imagine how confused you and your mum must feel. Like you say, how will feeding improve lungs? I would keep asking questions. It is such a hard time, I totally empathise. I know dad's specialist nurse has been on speed dial to us! She was so so helpful, and anything we were unsure of, i would ring and ask.

The staging sounds quite positive in that there seems to be no spread? That can only be a positive thing (as positive as it can be) Think my dad was T3 too and M0.

What was said about pre op chemo? It's amazing what the chemo can potentially do. It may help your mum massively. The doctors told my dad that his pre op chemo worked extremely well and reduced his tumor by 80%. Which is amazing. I hope you get some straight answers, but do keep asking. Sending much positivity to you

Received a telephone to say wanted mum admitted today with a view to tpn feeding till 4th then laparoscopy and fitting of jejunostomy tube.

It's so last minute. They say even if she does not have surgery will likely  need feeding tube if has further treatment like chemo.  I wonder why as she has gained weight not lost.

It's amazing what you said about the chemo and shrinkage of tumour for your dad.

We have a meeting now on the 5th October with surgeon face to face which will hope will finally give us some clarity.

On the up side we have been out mum has had hair cut and a cuppa outside.

Hope all well with you and your dad x

Hi Ollie1

Am glad you and your mum got out and were able to do some normal things. Sometimes it just feels as though your world revolves around the illness. I know ours has. 

I hope your meeting next week makes everything clearer. You need to know once and for all how they plan to treat your mum. Let me know how it goes. I remember sitting in the same meeting with my dad, nervous as hell wondering what they were going to say.

My dad had his dilation/stretch today and the change in his mood has been brilliant. The lack of being able to swallow properly  was really affecting him and was putting him off eating! It's been almost instantaneous the difference. They even gave him a tuna sandwich afterwards. It was the same surgeon who performed dad's major surgery, so he was glad. What a brilliant surgeon he is. It's amazing what they can do nowadays.

Dad seems to have eaten a bit more than he has lately, so I think this dilation has been the best thing for him. His surgeon told him that usually people need 2 dilations post surgery, so we will just have to keep an eye on things. 

Anyway, take care, stay positive and good luck for next week x

Hello CMJ78, good to read positive results as I have just been diagnosed. How long is the bike test for and do they set it for going up hills.

all the best to you and your dad