Last year I began to experience some extremely bad pain in my hip. I had it scanned and this is was how I found out I had secondary breast cancer. My hip was fractured and my spine was severely damaged. I had to have emergency surgery to put a gamma nail through my hip and femur. This, along with the hormone suppression and bone strengthening infusions I have monthly are what I rely on to keep the cancer at bay for as long as possible. My disease is incurable though so all it’s really doing is buying me some extra time. I’ll take as much of that as possible thank you!
In the meantime, we have to try to keep my symptoms under control and manage the constant pain I’m in. I have cancer in my spine, hip and, more recently, in my liver. The biggest problem for me, day to day is my mobility. The pain in my back and can be so severe I’m unable to walk for more than a few feet at a time. I live in a house with a very steep step of stairs so on the worst days I really struggle to walk up and down them. Our bedroom and bathroom are on the upper level so I tend to stay there and have anything I need brought to me. It can be very isolating and lonely. I can’t answer the door if I am in alone and I can’t let the dog out without asking someone else to help me. It’s infuriating, embarrassing and I feel trapped.
After my operation, I was referred to an occupational therapist and social worker. The idea was that they would come and chat to me to find out if there was anything they could do to try to make my life a little easier. They did things like adding grab rails in my bathroom to help me get in and out of the shower/bath (still very difficult task after my surgery), they put an extra bannister on my staircase so I could hold on to both sides. They also raised the height of my bed to make getting in and out easier. They were very helpful. To begin with.
We decided that, as my mobility issues are going to get worse with time, the best plan of action would be for me to have a walk in shower and to move our bedroom downstairs. We have a large extra reception room that used to be my work room when I was self employed. It was perfect. It measures around 16ft x 14ft (around 4.8m x 4.2m). I was then visited by the occupational therapist and a council building advisor. As soon as he saw the space he started talking about how small it was. I was shocked as it’s far bigger than the bedroom we are in at the moment. He told me that that bathroom he would plan would need to adhere to all kinds of disability regulations but he was sure there was still going to be plenty of room for our bedroom furniture. I was told that based on my medical condition, the work would all be paid for by the council. What a huge relief. I haven’t been able to work full time since before my diagnosis so the idea of having to pay it ourselves was worrying.
When we received the letter confirming the dimensions of the room, my heart sank. it was going to take up more than half of the floor space of the room and, most importantly, wouldn’t leave enough room for a double bed for my husband and I. I called them back thinking there must be a mistake but I was told this was the standard size for a disabled bathroom. I explained that all I need was a very basic en suite. The only stipulation I had was that it needed a walk in shower with a bifolding door should I require a shower seat. This should take up no more than 2m x 1.5m. They told me that wasn’t possible as it didn’t fit their pre approved set of government guidelines. Even when I explained I’d be forced to sleep in a different room, on a different floor of the house from my husband, they stood strong and told me that was my only option. She also added that if I was “in enough pain” I’d “be grateful for it”. I’m not sure what qualifies as ‘enough’ pain but I’m pretty sure I’ve just about reached the pinnacle of pain endurance and I can tell you that I’m still not ‘grateful’ at the prospect of being forced apart from my husband for the sake of an utterly unnecessarily huge bathroom that meets government approval.
I told my palliative care consultant who was furious at this outcome and she, along with my surgeon, oncologist, GP and district nurse, contacted them to appeal this decision. I even paid an architect to draw up plans for a more suitable ensuite that would allow us to move our existing bedroom furniture down with us but it was immediately rejected. There is simply no room for movement when it comes to government rules and regulations. We are not people, we are case numbers. It seems like such a harsh and unfeeling way to approach people with terminal illnesses. I was so upset.
So, after picking myself up and dusting myself down (as I’m very used to doing these days), I decided to turn to the people I know I can trust. You. My friends, family, neighbours and fellow patients.
I’ve set up a Just Giving page to help raise the funds and with your help, we will do this job ourselves. I will be able to move around my house with more ease, I will be able to have a shower without worrying about how painful it will be to get in it and, most importantly, I will be able to do it all whilst sharing a bedroom with my husband. Not like a patient with an NHS number or a case report code. Like a wife. A real person. Me.
This is the link to my Just Giving page. Thanks you so much for all of your support.
And, on a cheery note to end with… here’s a couple of photos from April’s ‘Nice Things’. My wonderful friend Suzie took me to see Bruno Mars at the Hydro in Glasgow a couple of weeks ago. What a show! We had a fantastic time. On Saturday, I went to a Gala Fundraiser with a group of friends who I absolutely adore. Getting to spend the whole day with them was such a fantastic treat. I can’t wait for the next time.
Catch up with you all soon xx