Prognosis?

Hi this must be so hard for you and your family.   I just felt that I wanted to reply to you.   My daughter died in 2019 from a very different reason.   But for years we always knew she would die before her time as her illness was a progressive one.  She actually died when she was 42 years old.   However the progression of how quickly her kidneys would fail doctors were unable to predict.   All we could do as a family was to try and forget about her illness for as long as possible.   But when it became clear that we were looking that her death was probably going to be within a year then yes we did see things very differently.   As every event we took it to be her last.  She did not understand that she was dying  so we had the added stress of trying to protect her until the end .  Which gives me some comfort.   However what I will say is that it is not as easy as it sounds.  I prepared myself as best I could by planning the details of her funeral and of what I wanted to happen at the end of her life.   To some people this must sound morbid.   But to me it gave me some sense of control over something that I could not control as in her actual death.  So for instance I made the decision about were I wanted her to die.  For me it was at home.  I made sure all the family understood how important that was.  Other decisions like the funeral,  flowers . Although some things that I thought about I kept to myself as I felt others would not understand.   Again for some this must sound weird.  But for me it felt a necessary part of coming to terms with her prognosis.   At the same time though we did as the saying goes live every day like it was her last day.  I don't mean by doing extraordinary things.  I just mean trying to enjoy each day.  For me to help mentally I did read stories about losing a daughter, about what  a good  death meant.  Again it did give me some comfort about what was inevitably going to happen.   I also tried ' mindfulness ' again I think this helped me.  I am not sure if you have had discussions with your mum and family about what is clearly going to happen.   But although this will be very difficult I think its crucial for everyone including your mum.  My best wishes go to you all. 

Hi Culer32

Welcome to the forum, Sorry to read that Mum has an OC and lung diagnosis, I wanted to respond here because I went through a similar search for answers when my husband was diagnosed. 

I believe the reason that the consultant is reluctant to give a timescale is because, in all truth, they just don't know!  They can quote statistics, but they are generally based on outdated treatment outcomes, and every individual is different, in regards to what treatment they are given, how well they react to it, how they mentally deal with their diagnosis and ultimately, how aggressive their cancer is. 

My Husband, diagnosed with an ardenocarcinoma of the oesophagus, with mets in his lymph nodes, lungs and liver was given a timescale of between 4 and 12 months, no chance of surgery, palliative treatment only, to help maintain comfort during his final months.  Like you I wanted all the answers, more so the waking in the night and listening to hear him breathing became a unwanted habit, almost making me paranoid.  

In reality, my husbands diagnosis was in May 2020, today, we have just come back from a weekend away celebrating in another New Year that we had been told we would not see.  As tough as it is to know how ill your Mum is, focusing on what might be the end, detracts from the Now, the importance of making every day count.. I do hope they find the right treatment as they have for my husband, and I wish you Mum every success with it 

Lowe'

Hi Culer32

I’m really sorry to hear about your mum. My mum was in a similar position where she had a stent fitted but was still really struggling to eat enough food and lost so much weight. Has your mum been given something like fortisip? which is high in calories and liquid so easier to digest although apparently not the greatest tasting drink! 

I think the doctors really can’t give a time frame but I can completely understand that not having that prognosis will make you worried about how long is left. My mum never told me her prognosis (I was always worried about her though and it was emotionally exhausting) but she sadly passed after being diagnosed 3 months prior.

If your mum is at home she will want quality of life so treasure the time you have together, shower her with love. Those memories will stay with you both forever.

I'm sorry you are all going through this. 

My dad is in a similar position with incurable oesophageal cancer and we were told 'around 12 - 18 months', but in reality it is only a guess. They can only base a prognosis on statistics from the past and its no guarantee. The unknown is definitely difficult to navigate and I am also filled with questions like you like was this his last Christmas, will he be here for the summer etc. It is horrible to have to sit with those questions, knowing right now you can't get answers to them. I am trying so hard to acknowledge that they are there but equally acknowledge I can't get answers to them.

Sending love x

Hiya all,

I've composed myself a little before I have written this as just the website can bring back thoughts that's are upsetting so I am grateful for any of the wisdom and kind words in the previous comments. We spoke to oncology today and there is no option to complete any chemotherapy due to my mum's physical state which was not an entirely surprising outcome however one always hopes for a better outcome.

It's a strange feeling because I only admitted yesterday that's I am surprised how this situation has Impacted myself as my mum is a fiercely independent lady to put it mildly I think most would call stubborn the word, however this whole process has shown me how much I appreciate my family, not just my mum. Something going on with work as well has really dealt sucker blow after sucker blow and with a history of depression I suppose I should not have expected anything but to feel as down and fed up as I do. However that doesn't mean that I want to feel like this and anybody that knows me knows how Happy I usually am and with 2 young kids I really need to get back to that place.

I probed the question of a Is time scale but in a humane and sensitive way as my mum was in the room although I do think there is some importance to her knowing the potential longevity of the situation. I asked it in a way about taking her a hotel for the weekend with my brothers and their partners etc... And that I was hoping that by the end of January maybe the end of February that my mum would feel well enough to propose that we spend a weekend in the location somewhere, I am sure she wants to go to Spain however that in the circumstances I don't think is an achievable plan therefore the next best thing to me is a Mini holiday break in the uk. His response had my mind giving a month of June however he said To look at a break if symptoms improved before April which although one assumes that does not mean that she will likely Have passed by then but rather she will be too unwell To come with was all. My only hope is that she has some improvement in symptoms enough that she can do somethindumb thing that she would like to do I think the realisation has set in for her that Illness is very bad with the tumour growing so large it is encroaching on her windpipe. This to me is a good step because it's going to be part of The curve that patients go through.

I appreciate that the comment above is lengthy and I assure you I haven't typed it because I don't think I would have the patience to deal with my keyboard on my phone For the amount of time it would have taken to do it. Thank you all for your comments as it really has helped over the last couple of weeks especially during Christmas when you often spend time as a family this year's has been Very much different to any previous year due to the situation but I cannot thank you enough for the support.

Have a good evening

Hi i just wanted to say that I think you are being very brave and very supportive of your mum.  At least now it seems that you can concentrate on making more happy memories with your family.  X

Here is one that one of you maybe able to answer, chips, it says no chips, can she have chips with gravy, sounds very unappealing to me but essentially soggy chips?

Hi from my husband's experience it was to do with the coating.  As this when swallowed clumps together.   So same for chip shop fish.  Same with pastry and white bread.  That is to do with the flour.  As brown bread is ok.  Hope this helps x

Thanks. She really wants garlic bread from the italian near me but thats off the cards as well isn't it? I know she cuts the pastry lid off pies and eats the middle but what she really wants is a garlic bread

My husband is the same.  So he eats it in very small pieces and takes drinks of fizzy orange to help it go down.   Sometimes he manages it anf sometimes he doesn't.