It seems like an age since I last wrote anything at all! That’s because, other than PET scans and MRI’s, things have stayed the same.
Still NED & Slowly Falling Apart!
I’m still NED in cancer terms however my other health conditions have started to really impact my life.
I pull myself out of bed in the morning by grabbing the radiator and stumble and toddle to the bathroom. My legs feel tight. They are not swollen. I have a deep, sharp ache in the bone of my left leg. This has been happening for years and no one seems to have any clue as to why?
In the beginning I was informed it “probably” has something to do with the erythromyalgia, certainly the hot/cold squishy feet are from that. Walking causes me pain. It feels like my ankles are melting into my feet and my feet, melting into the floor. Every step is hard. Luckily (🤣🤣) it’s not every day.
I have chilblains on my toes due to the Raynauds, my fingers tips are sore and painful. (Why we just don’t take me to a field and shoot me, I’ll never know) I can’t wear socks as they make my feet too hot! Usually a carefully placed blanket over the toes helps. (That’s if I ever feel them cold, which I don’t!)
My hands are full of arthritis causing me to be more clumsy than normal. I have burnt my arms and hands many times over the last few months. It hurts for a minute and then I am fine 😜
My breathing is ok as long as I don’t do anything. When I move it takes a lot to walk and breathe. There is nothing on my lungs. I take a daily diuretic which helps flush all the excess fluid from my body. It’s hard. I need to drink between 2-3 litres of water daily due to my stoma!
At times my left leg gives way and I’m having to drag it along. It’s worse going upstairs, I literally have to crawl up them!
Perhaps you can understand why I feel so very desolate?
No one knows how to treat me and I also feel at times that no one is taking it seriously. It is meant to be about my quality of life right now however how do you get healthcare professionals to actually understand what you are going through? Answers on a postcard please!
After rereading this post I decided that I/no one should have to live like this!
I took matters into my own hands and reached out to my Bladder Cancer Surgeon, Mr P.
I was at one of my lowest points in my life. I sent him a text begging for help! He responded and agreed to help me with the pelvic pain and upper torso discomfort (hernia) that I am experiencing.
The “Ready Brek“ Glow!
A CT scan with contrast was booked! This is when they give you a special dye (called contrast) via a cannula. The contrast makes you feel warm and fuzzy but only for a minute or so.
You then are scanned and the contrast travels around your body appearing white on the images produced.
The biggest fear for me was having the cannula fitted. My veins are deep, unpredictable and likely to blow the minute they see a needle. thankfully the gods were on our side and I have now christened my left arm as “my lucky arm”
I’m awaiting those results. I just want to know what is going on with this stupid body!
Anyways, enough of this moaning, old bag.…
I hope, as always, that life is treating you well? And that you are loved and safe ❤️
Love & hugs always
Still Alive ❤️