Prognosis?

Hi Sara

I was thinking of you earlier this evening but have been replying to another post....I am so sorry to read the information discovered via the Scan, I understand how difficult this is for Mum and yourself,  ((Hugs))

All I can offer is the suggestion that you try not to focus on the prognosis (believe me, I know that this is not easy, as much as I try it plagues me often and keeps me awake) focus on everything you can do, to fight back. Change Mum's diet, incorporate as many antioxidants as you can into her meals.  My Husband has been diagnosed with Adenocarcinoma oesophageal tumours T3N3M1, Liver, Lungs & Lymph nodes, May 2020... similar prognosis.  He refuses to accept this.

As the treatment for this type of cancer constantly improves anything is possible.  Cling on to hope, aim for your tomorrows

If you ever want to reach out, please feel free to do so.. I wish Mum every success with her treatment, Please let me know how she does.

Thinking of you both and sending strenght

Lowe' 

Thank you for your response Lowe'. It means a lot.  I'm sorry you're going through this with your husband too. 

I keep saying to mum to take each day as it comes, but it's so hard for your mind not to wonder. 

I am worried about how she is emotionally, and I don't know what to do to help with that side of things. 

I hope you and your husband are doing ok. 

Take care. 

Sara. x

Hi Sara,

I am so sorry to be reading this. Im sorry for your mum and you and your family. I really don’t know what to say with everything you’ve been through and the awful state of the world at the moment. You must feel so helpless and I’m so sorry you got this news.

The only comfort I can offer is that I’ve read a few stories on here of people with metastasis who have stalled the cancer and are living on as normal  and a few who have turned it around completely, please never give up hope. 

Also cancer research uk lists clinical trials which I haven’t researched but it may be worth looking into just to see if there is anything relevant to your mums diagnosis to discuss with the oncologist. 

Sorry I don’t want to interfere but I’m just thinking of some options for you x

im most sincerely sorry you got this news 

Chris x

Hi Chris. 

Thanks for responding.  It's always good to be reminded of "hope" even if everything feels so rotten at the moment.  It's so hard trying to be "normal" for the kids at Christmas. 

We've got the Oncologist appointment in the morning, so we'll get to know more about the treatment that she'll be getting. 

I hope your mum is still finding the treatment ok?

Take care and I'll speak to you soon.

Sara  xxx

So mum had her meeting with the Oncologist today.  They could offer her Chemo and Radiotherapy but have said it will only give her another 6-9 than without it. 

Mum has chosen not to have Chemo has she doesn't want to feel poorly for not a lot of extra time. 

She's been talked in to having radiotherapy to help her to retain her swallow, but it won't have any affects on her lungs. 

I feel absolutely heart broken.  I wish she would try at least one lot of Chemo to see how she feels.   You never know how successful it would be. 

So I face the prospect of not having her here this time next year.  I just don't know what to tell the kids.  They will be upset to hear the news but I also don't want my 7year old being scared, as we only lost his great nan a couple of months ago. 

I find it so hard to know what to say or do.  I want to see her all the time, take pictures, ask her to write stuff down for me... But I don't want to overwhelm her or make her feel smothered. 

I am finding it hard to bring the Christmas spirit for the kids.  They can see something is wrong with me, but they don't know what.  I don't want to tell them until after Christmas really. 

Hi Sara,

Thank you for the update, and yet again I am sorry  you find yourself in this terrible situation. 

All I can say is my mum is 6 days into her chemotherapy and she’s doing pretty well, just a little bit of tiredness and funny taste sensation. I’m not 100% but I’m sure the regime is similar for palliative and curative but worth asking. I know it affects everyone differently but looking at my mum now I would say she’s tolerating very well. Also you always have the option of stopping the treatment after a cycle If it starts to get too much. 

obviously I don’t know much but maybe it’s worth having a chat with your mum on that basis alone. 

I do realise things can change but I have read a lot of stories of a lot of people tolerating it very well. 

I myself had chemotherapy 10 years ago but I only had one infusion and can describe it as a bad hangover however I was 34. My mum though is 76 and has Arterial Fibrillation and is coping well up to now.

maybe worth the extra chat to see how she feels?  

Thanks Chris. 

I'm going to try and ask again, to see if she'll give one lot of chemo a try and stop it of she feels too bad.  But when I spoke to her about it today, she laughed and said "mother is being stubborn!". 

I think it's the sickness she's worried about more than anything.  I've tried to say there will be anti sickness things she could try but she's got her mind set it seems. 

I guess at the end of the day, I have to respect her decision... But it's hard.

Dear Sara

So sorry to hear this has been the result from the oncologist today, and then for Mum to decide that chemo is not right for her, this must be such a blow for you. Your Mum possibly made her decision after receiving such shocking news, she hasn't really had the time to process it in my opinion, hopefully, once she has, she will consider trying the chemo to see how/if if has any benefit/affect on her.

With my husband the treatment he receives has helped him to feel so much better and we believe, that it has bought him more time with us (although this has not been confirmed, it is what we believe and what we aim for).

Something else to think about, if you are going to discuss this further with Mum, is the consideration, that if she does try the treatment and she does not have side effects that are overly off-putting, the extra time this offers her is also extra time for the updated and additional cancer treatments to be released.  This happens so quickly, who knows what is being offered for our tomorrows, we just know that there are plenty of different things going on, behind the scenes, with an aim to give so many people, so many more tomorrows..

I hope that Mum will consider this further, but for now, she has every right to be stubborn as she processes the information she has received.

Here's hoping  (for both of you)

Thinking of you

Lowe'

Hi Sara, 

I've been reading through your posts and I'm so sorry for your mums diagnosis. My mum has oesophageal and lung cancer and has been told its inoperable and is currently going through chemo to help prolong things. 

When we were told the news that nothing could be done except for chemo (possibly radio) the decision was left to my mum as to whether she wanted to go through with it. She decided to have a break from it for a couple of weeks but then decided to continue with it (she was originally having it in readiness for an op but it started to spread). She too was very scared of being sick (she had a NG feeding tube) but they give her very strong anti sickness medications before the chemo and anti sickness meds to come home with just in case she did feel sick but she hasnt at all. Just very tired for the few days after the chemo. If she did feel or be sick and the anti sickness medications were not working as well as they should the hospital reassured us that they would be able to look at different meds to help with sickness. 

Hope this will give you/your mum a little reassurance x 

Hi Ser91.  Thank you for your message. Sorry for the delay in reading it.   My mum did enquire about how much extra time it would give her, and they said it would be months.  My mum decided it wasn't worth the hassle but the Oncologist said they will review it again after her radiotherapy.  

My starts her radiotherapy at the end of this week.  I'm hoping it will help her swallow as it's gradually becoming more painful, although she's still managing to eat normally if she chews it up small. 

I'm sorry to hear your mum has this horrid disease. I hope she is feeling ok. 

Take care. 

Sara. x