Hi Chriss

Firstly thank you for your lovely reply... yes i try to make a smile everyday even on the hard ones.

We actually separtated 2 years ago and it was a tough time for him but we remained close and on good terms. He had nowhere suitable to have our daughter to stay so he always came to stay with us so he could spend time with her. When he started to have bad pains in his back and was getting fed up with doctors fobbing him off and telling him to just take painkillers i pushed him to take it further, We both knew inside that it was something more. The day he got a call to say they found a mass on a chest xray and he rang me in tears I knew eveything that had happened between us was in the past and I wanted him home with us, not because i felt i had to but because i wanted too and couldnt bear the thought of him going through all this alone.

I'm the practical one and trying to sort out all the financial stuff so its something he doesnt have to worry about....I do find it hard because i want to know everything we can to make decisions but i have to let him lead the questions at the meetings...He knows i totally respect all his decisions but also want to be able to prepare our daughter as early as possible.I lost my mum to cancer when i was 20....he does get confused at the moment which makes it a little harder but he has always run away from making decisions.

We have a fantastic hospice nurse who has started to talk to him about end of life choices and having it down on paper so i can carry out all his wishes if it comes to a time he cant.

You mentioned that radio can make your bones weaker, thank you for mentioning this as if its not said in the meeting tomorrow i can bring it up.

Thank you for your support and wishes XX

Will be thinking of you all tomoz ... always here if you need a chat ...

It maybe an idea to get info, in case your daughter needs councilling after ... I think all young ones should have a place to go, where they can say all those things they hold in ... there's councilling for adults .. but they don't seem to have after care for young ones ... my lovely great niece lost her dad when she was about 12 ... and they do grieve differently from adults ... so just keep her close and together you'll get through ... 

Chrissie x

Thank you for your thoughts for tomorrow, dont think either of us will sleep tonight.

My daughter has been having councilling already, something her school set up, they have been such an amazing help and support right from day one.

My daughter finds it hard to talk about things to us but we know she opens up to her councellor and for this i am really grateful. This is not something that was available to me when i lost my mom.

L XX

Hi Missaloy,

Sorry to hear you are going through this. Reading your posts reminds me there are good people in the world, how you have taken your ex partner in is such a selfless and brave choice, if only every one had someone like you. I am pleased your daughter is also being supported by her school, its important for them to have someone to listen that arent involved. 

My Mum was disanosed last month with Lung cancer although she has been under going tests, scans and biopsy's since March. When they found the lung tumour it was relatively small and stage 2 so we were hopefully after an op and treatment she would be ok. However, during the last bank holiday my brother was concerned about her confusion, after seeing it for myself I attempted to contact the CNS team. It took a while and alot of promises to call back. Finally they did and I was told an MRI had shown a 2cm brain tumour. Yesterday we were told a second biposy of her tummy lining is also cancer so it is stage 4 and given her 2 years with treatment. We have been given hand fulls of paper work and need to decide by next Wednesday when we see the consultant. They have mentioned radiotheopy, chemo and imminotherpty. I have tried to read the leaflets but can't get my head round it all. 

Hi Roselou

When you are faced with all the choices they throw at you it can be so overwhelming trying to weigh up treatment versus quality of life which in my mind is the most important, Yes we want our loved ones to be with us for as long as possible but we also want them free from pain and sickness.

Iam so sorry to hear your Mum and all your family are going through this. Firstly i would say don't feel forced or pushed into something you are not all 100% sure of, research and ask for all the possible outcomes.

I have a brother who is a surgeon(not Oncology) but he is very honest with myself and my husband, also our hospice nurse and i feel these are the only 2 who are. my brother said to me "Oncologists are overly optimistic with patirnts and relatives because they are dealing with drealful situations and dont want to depress patients"

it brings it all home when mid way through writing this my alarm goes off for afternoon meds!!!

Today we thought we were going for appointment that was going to be about the results of Brain CT and MRI....We have a problem with one of our oncologists underlings who has now got a habit of passing on information at the wrong time or about the wrong thing....In the hospital after my husband had been admitted because of confusion he told him that he had brain mets without me or another relative present...i was fuming....anyway back to the point the meeting today was another underling telling us that we would get a call from another bigger hosiptal about gamma knife radiation....she couldnt answer about a time frame and was not comfortable me asking about how urgent all this was as i'm concerned about our daughter finding out when its really late.

My Point is Dont Ever be Afraid to question and to get the answers that you need and want.

I'm learning that everyday now because the less stress you have about decisions and 2nd guessing the medical advice the more quality time you have with your only mum and she is precious.

I wish you all the very best and hope your mum gets the treatment that helps her and your family in everyway

XXX

That's it, Mum is already quite poorly and has lost a lot of weight so seeing her get even worse due to the treatment is going to be heartbreaking and may not be the best thing to do. But in the other hand we want her here for as long as possible. I have just been to the chemist to buy her fortisip drinks as someone recommended them to me, 8 bottles were £30! I have left a message for the GP to call me back to try and get them on prescription. My Mum has also been my child care for my two children ages 9 and 3 and I will need to look at alternatives which again is heartbreaking as the children keep her going but I have to be realistic. My 9 year old knows and can see Grandma isn't well and knows she has cancer, she just doesnt know the full story. It's so difficult to know whats right as they both adore her.

It sounds like you have a great support network with your brother.

Wow, I can understand why you were not happy, especially telling him when he was already confused. It sounds like you have also not been having the best experience with NHS, I was informed after our experience to make a complaint with PALS, have you heard of them? At this moment in time only being told yesterday that Mums cancer is not curable I don't feel like I am ready to put my energy in to this but in time I think I will. When I had the call about Mums brain tumour and how it has caused a lot of swelling which was why she was showing confusion, defensive behaviou (very unlike her), being off balance and feeling very tired we were told by the CNS team to get her to A&E straight away for draining of the fluid. They told me the Neuro nurses were on alert for her arrival. When we got to A & E they werent aware of her arrivial and there was no bed on the Neuro ward for her. Instead we were stuck in the corridor of A & E on a trolley in a Q! After 3 hours a consultant came down and said to us he didn't understand why we had been told to come in, he said 'I've looked at the MRI, yes you have lung cancer and yes you may have a bit of cancer in your tummy and yes there is a small brain tumour but you could have just been given a steriod prescription and discarged her! We were made to feel like we were wasting their time and that all she had was something to the equivalent of a broken toe. My Mum came away thinking it wasn't bad and gave her false hope. Then yesterday we are told she is not cureable. This unfortunatley is only half the story. I have been making a bullet point diary with dates of appointments etc in case I decide to, you may feel its comforting to do the same? X

Does your mum has a hospice nurse as i really find that she is my first point of call for anything we might need doing. Ours is from Dorothy House and she really is an angel. An amazing go between when i feel the hospital or DR's arent giving us the support we need. We are also now in contact with the district nurses as my husband needs blood sugar tested each week due to the anti-seisure meds and they are fantastic too. maybe i am biased as my mum was a nurse...a hospice one too....but find they have more empathy and have more time to give that support......they also give great advice about helping children through this very difficult time

It really sounds like you have a lot on your plate with your 2 young children and it must be very difficult for them to see her sick.

We have had experience of been told to wait for ambulance when this same young oncologist panicked about my husbands spinal MRI, I rushed home from work, 2 hours later still waiting then i get a call from ambulance, they asked questions and told me to take him there in car and A&E were expecting him, got there no one was expecting him so we walked over to other side of hospital to oncology and got a bollicking for not waiting for ambulance....A case of the right hand not knowing what the left one is doing.....

I havent heard about PALS but looked it up quickly tonight....I intend to talk to my husbands Oncologist who we have a very good relationship with when we see him next week an are going to request that this young Dr is not involved in my husbands medical care, our hospice nurse backs us on this and is going to tell him the same........  1 mistake you can overlook but its up to 4 now.

At the moment i dont want to spend my enegry fighting a system so i can give my all to my husband and daughter but as long as i get it documented then maybe at a later stage...who knows

The one bit of good news is that i found out today that i can stay home and care for my husband full time...I dont want him spending which could be his last months with a carer...and i know he would do the same for me.....A lot of phone calls and advice from macmillan about benefits etc and yes we will have no extra money but right now as long as i can pay the bills and keep food on the table and a roof over our heads....thats what counts.

Keep strong XX