My tumour and Me

My name is Kim and I have been a nurse/midwife for the last 10 years. I'm sitting here in hospital A&E with my beautiful husband waiting to see a doctor, as Padraig has again had a stroke like episode the third one since November . We have 3 children under 6. My beautiful husband Padraig was diagnosed with a grade 2 oligodendroglioma in 2010 and has had multiple awake craniotomies, biopsies, radiotherapy and a full year of PCV chemotherapy. We have struggled at times during this awful journey but never given up. We fought a long battle to get a medical card for Padraig which a local TD helped along the way. I have worked so hard this past 7 years looking after the sick in my daily job as a nurse and never have I asked for anything from this country/state. I have fed and clothed my children, paid my mortgage and health insurance every single month without fail. We applied for the long term illness scheme to pay for his anti seizure medications but were denied, stating that he does not fall within the minister for healths criteria for the scheme. This was another hard blow along with all the others. I've emailed the minister for health but never received a reply. In recent weeks Padraig has become more unwell and the prognosis for this tumour is 10-15 years. He has no life insurance as nobody will insure him. Our whole married life has been this tumour, it is all that our children have ever known. All I do is work, work and work to keep us afloat, while he stays at home. We cannot make any special memories, special trips with the kids as we are just paying bills and barely existing. We met with Padraig consultant neurosurgeon a few weeks back who recommended that Padraig not be left alone with the children due to the unpredictable nature of his tumour regrowth and the stroke like seizures that cause him total right sided weakness and speech deficits. He recommended that I reduce my hours in order to be at home, reading between the lines I detect it may be the beginning of the end of this journey. So I now sit here in tears wondering what exactly am I supposed to do, bills have to be paid, kids have to be looked after and eat and I also need to make memories and spend time with the love of my life before it's to late. So what's available for a family like ours?? Every payments are means tested and according to them 'I earn too much' but I'm barely treading water. Padraig has began writing his story which he hopes he can make into a book that will make enough money to pay our mortgage as that's all he wants to do for me and the kids as he has no life insurance/ no mortgage protection. He is 33 years old and has lost so much time to this tumour already. I asked him awhile back what he would like to do if we had the money, he would love to have a honeymoon as we never got one as he was just post surgery. He wants to see New York, wants to bring the kids to Disneyland and make magic memories. I have promised him that I will do my best to try and make something happen for him. I'm still not sure what I'm sending you this email, but I'm sick of doors closing, we need something good to happen. I'm so sick of this tumour it has not only invaded Padraig's brain but also invaded our lives. I just want to grow old with Padraig and watch our children grow up. Im so proud of Padraig as he has been through hell and back and has never complained never faltered, but the cracks are beginning to show. Do you know anyone who might publish his story or help us?

We are in a world of pain and this isn't even the beginning.
I hope you can help me and my beautiful family.