Firstly the latest update is that I am back in hospital...but I am ok with it as I finally feel I am getting the aftercare I need. I am in Leicester Royal Infirmary Transplant Unit this time which is my nearest unit and the one that works with Northampton. I am under the care of a consultant called Dr Hunter (she liaises with Prof Marsh in London) and she is fantastic. Quite frankly it is so nice to be able to finally have someone in control of my aftercare which is so important, Kings College Hospital have been appalling with this and it is something I am taking further.
I am back in hospital as my Graft vs Host Disease flared up again. I was on a lowering weaning off dose of the steroids they started me on to help with it but the skin rash came back over my whole body and Dr Hunter, who I had an appointment with in Northampton, decided to admit me to get it under control. I was put back on higher dose steroids and the rash has practically gone, we are now lowering the dose over the next few days and I should be home on Monday. I feel good although still very weak and have shakes in my hands from the cyclosporin drug I am on and cramp in them too which makes it hard to do things, but it is all a balancing act and hopefully all will be well and the GvHD will not flair up again. The Immune system is a learning system so it has been suppressed and put into check, basically told it cannot do what it is doing, the attacking, and it should learn! Very complicated but amazing stuff.
Had AMAZING news the other day... I have to have bone marrow biopsies every 30 days so I had my second one last week. They take a piece of bone and the liquid from the inside of the bone from my hip so they can see what the cells are doing in the marrow and how they are growing. The aim after transplant is to have 100% donor cells and none of mine and I currently have 97% donor cells in my marrow....WooHooooooooo.....
So I have yet to talk about money even though it has been a thing that has occupied my stressed out mind for a number of months. Being faced with a life threatening cancer illness and the prospect of months off of work is very daunting if you don't have a load of savings in the bank or a helpful family, because I can tell you now you get nothing from the government!
Don't get me wrong I don't believe anyone owes me a living, I want to work, I have a job, pay my own way, pay all my taxes etc.... but if you get sick you get no short term help, yet this is surely the time that you need it. Temporary short term financial assistance from the benefits system (don't get me started on the inequalities of that!) when you faced with a life threatening illness, which is not fixed will effectively leave to death...so it's pretty important and urgent to continue with treatment! You get more money just randomly given to you by the government for going through the wonderful choice of having your own child even if you have a partner and work.
In my work contract I get 2 months full pay, 2 months half pay and then I go onto Statutory sick pay for 2 months (this is £81.60 a week). I am currently in month 4 of my sick leave so on half pay. After 6 months I get no pay from work and then I can apply for employment support allowance which is approx £65 a week. My rent alone on my house, without bills is £610 a month! hmmm.... you do the math!
When I was preparing for the treatment and the time off of work I looked into any financial assistance I might be entitled to. Thinking in my naivety that there would be some. I called the benefits helpline and they basically told me about the following I could apply for but may not be entitled to:
Employment support allowance - can only be applied for after 6 months when Statutory sick pay ends, £65 a week.
Council tax & Housing benefits - Can only be applied for after 6 months when money coming in is low enough to qualify, It will roughly half my council tax to around £65 a month.
Disability Living Allowance - Is only payable if you will have care needs for over 6 - 9 months. Is made up of a care and mobility component depending on your needs and can vary from £20 a week to £150 a week. I have been rejected for this already as I was told I'd only be off for 6 months, although not sure that is likely now, it may be a little longer.
That is it...that is all the benefits that I could apply for but definitely don't get if you are off for 6 months, even when on only £81.60 a week.
There is also very little help and advice out there. Macmillan are the main charity, well only one, that offers comprehensive advice on money for people faced with cancer, and they have been great. They also offer grants of £500 to help with all the costs of being ill which I was initially told I could not apply for as my initial diagnosis was bone marrow failure (Aplastic Anaemia) even though the treatment is exactly the same as for a cancer patient. However my illness developed to include Myelodysplasia which is a pre-cancerous condition so I have been told by the very helpful staff here at Leicester Royal I can apply. It is such a stressful time, what you are thinking is will this treatment work, am I going to live! However your mind becomes occupied with can I pay my rent and bills, will I lose my house! This is certainly not conducive to getting you feeling better and fighting fit.
Costs mount massively when you are sick too. Thankfully as I am currently under regular care of the hospital I get my medications given to me, considering I have to take around 20 tablets a day plus creams and lotions for my skin, mouth washes etc... Eventually I won't, like the past 8years where I have been on medication for my illness and paid for my prescriptions, and will have to pay £7.40 per item at the pharmacy! If I was on benefits or was a single mother, or an asylum seeker or a layabout not getting a job, or any other things I could say here which are probably very politically incorrect (don't get me wrong I know there are many desrving people on benefits but we all know there are many that are not!), I'd get it all paid for.....All of it! It makes my blood boil. Even pregnant people get free prescriptions and dental care etc... and that as far as i'm concerned it your own choice to make! I had no choice in this...I had this treatment or I died....simple.
Travel costs to and from the hospital, London, Northampton 3 times a week, Leicester...all adds up. My family have spent a fortune. My mum and aunt stayed in London 2 nights a week for 6 weeks so it was approximately £100 a day for that, plus petrol getting down there and back, then when I was readmitted they had train fairs a few times a week to visit for another 3 weeks. They had to buy me food too as it was so appalling in Kings.
I should have just got pregnant at 16 and i'd be sorted financially now! Ah I feel a bit better for writing that down... this is like therapy!
Until next time....
P.s...I am not anti pregnant people...honest...just think if you choose to have a child you should be able to pay for it, but that is another story! ha ha....
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