The Cost of Living

I have a friend in America.....

I have many wonderful and brilliant friends in America, women I met on a summer camp in the Northwoods of Minnesota way back in the 80s. Each one is one in a million. But I also  have a new friend in the States who I have never met. I (virtually) met her on a swimming group on Facebook as we were discussing the issue of swimming whilst being immune-compromised due to being on chemo. We chatted to and fro for a while about our different treatments, not having hair and generally life with cancer... and eventually became 'Fb'  friends. Kelly lives in Florida and by what I can see is a shit hot swimmer. I have just learned we have something else in common, she has just sent her sons off to a summer camp in Maine, a camp that looks very like Kamaji; very back to nature and very beautiful.
She and I got to comparing stories and the cost of healthcare came up and it got me thinking in numbers.....so here is a numerical story of recent months...

23 - the date in December (Christmas Eve eve) when I found out I had Lymphoma
6 - rounds of CHOP chemo.....all done and dusted now
1000 - the cost in £ of each CHOP treatment
5 - months I wasn't allowed to  swim 
at least 2500  -  press ups done over the last few months (by me, thousands more by other people!)
29 - the number of injections I had over the last 12 days
250,000 - the price to buy a stem cell harvesting machine
15,000 - the cost of one treatment of Mozobil (the stem cell boosting drug)
2 - the number of treatments of Mozobil I needed
2.5 - times my blood went out and back into my body during harvesting
400 - mls of plasma collected, to be mixed with the stem cells before I get them back
992,000,000 - stem cells harvested from my body last week
200 - lollipops Sharon gave me to counteract the taste of chemo
2 - times my hair has fallen out
150 - kilometres ran during my mid chemo running streak 
8 -  kilometres swam in my brief swimming hiatus in June
6 - more days until we see U2
91 - my CD34 count on harvest day, it had been 10 the previous day. This needed to be at least 15. If you're interested CD34 is an important adhesion molecule for stem cells!
2,762 - £ Rachel and Di have raised so far for their Great North Run for Lymphoma
100s and 100s - amazing things that have happened to me and Rachel because of our wonderful friends.

Just numbers - facts and figures that all add together to make up a numerical picture of my experience with Lymphoma. Some of these numbers are staggering, the amount of money that Di and Rach have raised for their Lymphoma appeal, the cost of the machine that harvests stem cells and the incredible price to have the Mozobil administered.

When the Doctor said that I would need this injection he had to apply for funding to the board at the hospital, you can only have three of these injections in your life time so luckily for me it worked second time. I have a substitute dose left, but that would be for next time and there won't need to be a next time.

Out of these facts the things that have interested Kelly and I are of course the swimming and definitely the loss of hair and all that implies and means to you each and every day. But also the staggering and mind blowing cost of all this treatment financially.

Here in the UK we are so lucky to have the National Health Service which is the largest single payer healthcare system in the world. Primarily funded through taxes it provides free healthcare to every single legal resident of Britain and some services are free to everyone including visitors. It is a service in crisis with a chronic shortage of staff and beds and in many places even hospitals. This can mean long waiting lists, cancelled appointments and often frustrating encounters with its facilities. However the NHS may be run by a group of idiots at the Department of Health but the people who make it up, the teams of people that make it work, the people caring for you are the most amazing, dedicated, caring group of professionals you could ever hope to come across. 
The NHS might be at breaking point but it isn't broken and we are so incredibly lucky here to have this incredible service provided for free. 

Compare then some of Kelly's figures...
If she didn't have insurance these would be the costs she would be faced with ...
45,000 - $ per  round of chemo
14 - rounds of chemo needed
32,000 - $ for each injection of white cell boosting treatment and it goes on.
However Kelly does have insurance so....
27,000 - $ the insurance company pays per chemo
750 - $ Kelly pays per round of chemo
I have no idea how far she swam but I know Kelly put in some serious lengths for a charity swim for Cancer organised by swimacrossamerica.org

I have read some of the ideas in the proposed Health Reform Bill planned by Trump and his Republicans. It's complicated and I can't begin to explain or admit to understanding it, however anyone can see that it is bad thing. It is cruel and the people who will most suffer as a result of any change in legislation are course the most vulnerable. 

If you have no insurance because you can't afford the extremely high cost of private heath insurance then you might now potentially be up 'shit creek without a paddle'. When I see on the news all the brave protestors in the States trying to stand up for their basic human right to health cover I am very quickly reminded how lucky we are here, how important it is to preserve and strengthen our Health Service and to celebrate all that is good about it. Being seriously ill is one of those things that you just hope you won't ever have to face, but if you do then you want to know that you won't have to worry about the cost of healing; put simply I couldn't afford to get cancer without the NHS being there to support me through it. 

But we do have the NHS and I have spent rather a long time this last week using its services. As a result the harvest festival was successful....(eventually, third time lucky) and I now have all those stem cells sitting in a freezer waiting to be put back in to me sometime in August. That's a weird thought! So I have a mini break now from treatment, a time to get stronger, recover from all the chemos over the last 6 months, a time to reflect on all that has happened, most of it, strangely, life affirming and wonderful. It's also a time to hopefully enjoy feeling fit and healthy and being able to be outside, doing all the stuff I love to do especially when the sun is shining as it is today. I have one more spinal chemo and some tests and then hopefully I will be in remission and can have the final hospital treatment in August.

The cost of living through a disease like this is expensive in monetary terms and it is expensive in emotional terms. But it can also give you such clarity and perhaps help you to re-jig things in your life to what is truly important. I am going to spend the next few weeks concentrating on those things..
..being outside, going on wild adventures, spending time with the people I love, communicating with people I love who are far far away. The cost of living is high but it's worth it.