How are we all holding up?

Hi Everyone and Thank you Wee Me for starting this thread and asking the question!

I don't often stop to think how I am holding up, often it all seems a little unreal, when in reality it is most definitely real. I spoke to my husbands oncologist last week because I began to feel as if I was being lured into a false sense of security. I was advised, had he not had treatment of any kind his prognosis was 4 or 5 months  with treatment the expected prognosis is 1 year.  We are now nearly 7 months in from his diagnosis, and he has responded exceptionally well to the treatment for oesophageal cancer, but she cannot confirm that his prognosis can yet be extended.  

So you ask, How am I holding up?  Well, possibly through disbelief and non-acceptance, I am managing to carry on a "normal" life...I watch my husband respond well, look well, regain weight and eat full meals... I pray and keep the faith that his prognosis will extend and his own personal visions and beliefs keep him with me against all odds.

I plead ignorance to my own emotions, I ignore my scared and broken self, and I stand strong and focused for my husband, my children and my grandchildren, but also for his Mum and Brother...this is hell for them too. 

But when I allow myself to think about it, I realise how lost I truly feel, I see even more broken pieces that I had not noticed before and the tears hit my eyes, where ordinarily they are denied......

But it is also necessary... and right, to take a moment, live with the reality, then Breathe!, cover-up the cracks and larger broken parts, wipe my eyes and smile.....Remember that no one is promised tomorrow...Step-out again and live for today.

I hope you are all able to take a moment for you, regain your strength and carry on.....sending Love and Strength to all

Lowe'

I'm not sure if you were told the same but we were told before radiotherapy that it could make symptoms worse due to swelling caused by the treatment. 

I imagine that surgery in that area of the brain will leave lasting effects too

I hope that as you say it's the radiotherapy causing his symptoms.

As you say.... day by day is all we can do to get by

Xx

wise words, Lowedal

xx

I guess i am ok but could be better?

Husband is home, started chemo again yet hardly leaves his bed or eat. He is determined not to have any more chemo delayed/cancelled so struggles on and is petrified of going back to hospital (fair enough, sounded like a dreadful time as there is no visitors and staff are completely overwhelmed with work). On the practical side he is getting thinner and weaker, struggles to walk etc, is depressed and his conversation (with me) has shrunk to a detailed and blow by blow analysis of (his) physiological phenomena so I can’t say he is super fun to be around.

I don’t know what to think as looking at him he can’t last long on that path, yet the oncologist reports are pretty upbeat (or as upbeat as it can be for a terminal diagnosis). Not sure if he has kind of given up, but his desperation for chemo would indicate otherwise, so i hope things pick up at some point as at the moment it does seem a bit pointless.

Anyhow, i am hoping the palliative team will finally get in touch and sort things out for his mood (he needs to speak to someone other than me) and all the other things they are meant to be helpful with as so far help has been pretty thin on the ground.

I can’t believe it is almost December already!

Hang in there 747  

Big hugs

x

You too! 

We have just received terminal diagnosis we are hoping to make it to Christmas. He went in today thinking we were going to be given a treatment plan! 

LeaM

I am so very sorry to read this, ((((Hugs)))) I don't know what the diagnosis is, but with the prognosis having you mention that you are hoping to make it to Christmas, I can only send strength and positive thoughts to you both...

Thinking of you

Lowe'

Thanks 

Hi Wee Me, great that you’re hanging in there, as we all are I guess. We don’t have any other choice do we? I hope it’s better news than you expect later this month.  My hubby has been back in hospital twice, once to stay for IV antibiotics for 6 days and then earlier this week with a high temperature.  His disease seems to be progressing. It’s living on the knife edge of potentially going to the hospital due to temperature again that’s absolutely plaguing us. They can’t find the source of the infection. like you said, it’s worse not knowing. 
he is due to start oral chemo on Monday which is new to us. I think he needs to feel like something is being done.  They had to take his Picc line out as they thought it might be infected but it wasn’t.  Ironically he had a good day yesterday and said he’s felt better than he had in a good while. Today is different again.

keep on going and good luck for the 22nd x 

hugs xxx