Not being the financially minded type, it came as a bit of a shock when my hubby could no longer take charge of our accounts, bills and budgeting. It’s taken a year and half but I have just about organised myself and learnt some things along the way. It’s been a real challenge as although I am Alex’s next of kin, this did not give me the legal right to access his accounts, pay off any credit cards or even sell our jointly owned home. It took a good year to gain deputyship (power of attorney) and cost a whopping £5k for the privilege!
My first piece of advice to anyone dealing with a brain tumour is to make sure your next of kin can make these arrangements for you should you become unwell enough (whether for a short time or more longer term). This can be done for less than £150 and relatively quickly if you both sign whilst well.
For some people, situations can change almost overnight leaving you facing so many challenges, including financial ones but there are people who can help. Contact organisations like the wonderful Headway for emergency assistance. In some cases they can offer you support for things like travel etc which in my case was costing £300 a month in just parking fees.
In the long term, make sure you access all of the relevant benefits. This was a minefield for me as different people offered us varying advice. Do by all means try Citizens advice but they didn’t tell us anything we couldn’t find out online. Better still, book an appointment with the local Jobcentre who will run through all your options. These could be: ESA (Employment Support Allowance – once sick pay runs out), PIP (Personal Independent Payment – only available once you have been discharged), tax credits/ child credits, free car tax if you have been left with a disability (and obviously a blue badge!) and several others.
These websites may help:
All the best. X
Today I was able to contribute to a meeting with the Brain Tumour Charity. I have been supporting them over the last year and today was able to help develop research for improving the communication framework and support available to brain tumour patients and their families. I met some incredible people with inspiring stories to tell and some leading physicians with a real passion for improving their disciplines. All of us were brought together through the hard work of the Brain Tumour Charity. Do have a look at their website! X
At last some cards that really say it how it is! I saw these cards appear on Facebook and thought they were much better than the boring ‘thinking of you’ cards. Xx
Sometimes life throws the unexpected at us, and because it’s unexpected it leaves us feeling totally lost. When you experience this sense of loneliness, vulnerability and overwhelming fear, it can take just one kindness to give you a glimpse of hope, a reminder that there may just be a way forward – however painful.
Up until the age of 22, I lived a relatively carefree, naive life thinking that everything would continue to go my way. I had a lovely home, a great teaching job and most of all – amazing love. Not just from family and friends, but the all consuming love that comes with meeting that one person who teaches you how to fall in love. For me this person was (and still is) Alex. We met in our first week at Loughborough University and have been together since day 7 of our first term studying Geography. Alex taught me how to truly love – and this has made it all the more painful now that he is the person I fear I have lost. At 22 Alex was diagnosed with a pilocytic astrocytoma (a brain tumour found on the hypothalmus). Since then he has undergone many operations to relieve pressure, insert VP shunts and de-bulk the mass. Each operation Alex took in his stride, and although recovery was never an easy process, nothing could have prepared us for the last 6 months of our lives.
In October 2014, Alex was re-admitted to the John Radcliffe hospital in Oxford to have another tumour de-bulk. 4 weeks later Alex was moved to Neuro-ICU where he stayed on life support for 8 weeks. After 2 months in a High Dependency Unit he has since been moved to the Royal Berkshire Hospital in Reading where he is waiting for a place in Neuro-rehab. The Alex that is with us now, is currently a very different man to the one who walked in.
I hope that by starting a blog like this, one day it may help someone else who is experiencing the same emotions and ‘life in limbo’ that I am. I intend to share our journey (past, present & future) and any advice I have kindly been offered along the way, whether it be emotional, financial or just a place for people to see that they are not alone in this. After all, hope can come from just a small kindness!