At a loss

Hi I know that overwhelming feeling and its not easy to deal with. I am not sure that I can offer any good advice but just wanted to offer a bit of support. We have done the bit with palliative care around end of life and even when they talk to you it still seems a bit surreal. I am just trying to 'keep going' and find work has become my escape from dealing with it all. We have been lucky in that all the care we have received has been completely first class and all the teams have been so supportive to both my husband who has cancer and myself  trying to care for him and it has really helped in this terrible situation. I hope you find the support you need for you and your Dad and could only advise that you ring the support teams and try and get some answers. I wish you both all the best in trying to deal with it all and hope that your Dad is as comfortable and pain free as he can be.

Take care too xx

Hi Moo (can I call you Moo?).

I'm sorry to hear about your situation, and that you too have had to join us in this club. I too am a father of 2, looking after my mum as best I can.

It sounds like you have unfortunately met the Oncologist who missed the 'bedside manner' part of their training course. How horrible for him to be so matter of fact to you. How can people be so insensitive?

My mum has lung cancer with secondary bone cancer. I think this is Stage 4 (advanced, spread) but I asked twice and nobody specifically said. We've not had a biopsy so they haven't been able to give it a name either. Prognosis is a best guess, so take it as a guess rather than a guarantee.

It's good to hear that you have the palliative care team in place. You should be able to get free personal care when needed too. Get more than you think you need, as it's harder to upgrade once they've allocated you set times initially.

Look into attendance allowance (macmillan sorted this for my mum). Make sure wills are up to date.

I think we're told only what we need to know. They deal with facts only and not hypotheticals, but you can ask questions if you need to. Do you have a specialist clinical nurse assigned to you? Do you have their number?. You can ask questions to them ahead of your next Oncologist meeting if you need to.

I hope you're OK and are coming to terms with everything.

This is one seriously horrendous journey and I’m so sorry. I’m in the same boat. My lovely dad is fading away rapidly. I’ve been on this rollercoaster 5 months and I’m weak and broken. 

I can’t offer any advice but believe from our experience oncologists don’t now routinely offer a prognosis.. but yes I get the feeling like you have “been binned”. Chemo ruined my dad.. could have been the cancer but I believe the chemo! My dad never wanted to know and I respect that but from coming out that appointment of my dad refusing more treatment it’s been a whirlwind of a week… a heavily rapid decline. We won’t see an oncologist again.. just palliative care. I’m fighting everyday for then to help him.. he’s 69 and a proud man.. he can no longer walk. We have been binned…he’s building of fluid.. they said try A&E.. I said you joking.. to sit there for 17 hours.. he’s so frail. I will call them daily and I don’t care if they have had enough. I want the best for my father. I would recommend talking to the specialist nurses who will have all his results and prognosis (it took me a while to find them but I did eventually) they will be there. 

I think it’s natural to feel it’s all made up.. I wake everyday at 3am feeling like it’s all been a mad dream  I send you love and best wishes! Advocate for your dad.. that’s all the power you have at the moment xxxx

Thank you for your lovely reply offering support Gingernut,so sorry you're going through this with your husband ️ But glad to hear he's receiving thr best care.

Sending all my love and thank you for your advice x

hi Mav,of course you can call me moo

thank you for your informative reply,I'm sorry you're going through this with your mum ️ 

I feel like I've processed this far more than my parents have and that worries me.

I don't have a clinical contact number but I will be running some questions past my dad to ask when we go to the consultant.

I don't want to ask questions that Dad doesn't want the answers to,but I really could do with them being a bit more factual

Hope you and your family are coping OK  and thank you again for your reply.

Best wishes,  

Thank you Louise8321,

I'm so very sorry that your Dad has had such a sudden decline in health   You are being so brave,its people like you that give me the strength to keep strong,keep going,and fight for the care he needs.

I just feel left in limbo,and like Dad hasn't been told in a manner that he would take on board so seriously as he would if it were to be put in different terms.Ive tried to reword things,nodded at the palliative care team but when he's looking at me for reassurance that this isn't the end I just crumble

Why should I be the one left translating things?What if I'm wrong?Did I hear them right?

I will keep advocating for my dad,I hope you also recieve the help and support you need to get through this time.

I'm sure your unconditional support and love is much comfort to your Dad right now,stay strong and go with the emotion ️ xxx

Hi moo, thank you for the reply. The palliative care team saw my dad yesterday and told him two weeks, they were quite frank. 

could you pull them to one side and ask the questions so you can give your dad the right information (not that you should have too) It’s so difficult isn’t it, heartbreaking. It’s strange I go from acceptance to being with my dad today and then being in disbelief.. I’m truest tired of crying. I so wish this wasn’t happening. 

im sending you so much love.. I really don’t know how I’m getting through this period.. but you will get through it too I’m sure ️