Should I feel disappointed with my cancer care

My blogs on the whole have always been generally positive and although i feel the need today to let some bad thoughts out that have been circling around like vultures high up in my mind waiting for the opportunity to feast upon my positivity I wont let negativity win.

so whats my gripe, I think gripe is a most excellent word, its not hatred but something slightly more up the scale from dissapointed but not quite angry. My gripe is the follow up treatment i get after monthly blood checks or rather the lack of it and any empathy that should just be the least of my expectations.

once a month I engage in the ritual of hormone injections and blood tests. Hormone injections I can cope with, just. They are painful and energy sapping for several days but I know where I stand with these, there is nothing hidden. The needle goes in, my bellow swells up and my emotions go on a merry dance of ups and downs, i guess I am lucky in many ways in that i’m fortunate to get the highs more frequently than the lows. Somedays the highs can be hard to control as I resort to seeing the world almost through a kind of child like innocence where nothing is bad, it’s all good. The lows can be devastating and arrive without any warning or invitation. One minute im fine, the next there is a knock on the door some where in the dark recesses of my mind where a nasty darkness invades the party. It can be just a matter of seconds where its cold to hot, happy to sad, brave to terrified. Tears sometimes arrive too, they are unstoppable. Im embarrassed, as a man I’m not supposed to cry but hell with that I’ve learned the value of a good cry. Its like releasing pressure that builds up, an escape valve that opens and out comes the tears of a million worries that have been gathering.

The hormone stuff I can cope with because it’s transparent , I know what to expect I’m an expert I’ve had over thirty of them so far. What I really find difficult is the anxiety regarding the blood results and most scary is the PSA test. This result is my marker for life expectancy in some ways. For two years the drugs brought it down and it stayed low, barely even recognisable 0.01. Then one month it changed and started slowly but surely creeping up. The first change was so amall but nether the less it was there. Anxiety grew with each consecutive month, my mind dreaming up all kinds of nightmares, the anxiety gates opened. I through myself into work and anything i can to distract myself, to bury my head in the invisible sand. Questions start to queue up in my head, ones I’m terrified of hearing answers too, every new ache or pain creates more questions, I’m tired does that mean !!!
I think my latest test will be the fifth one since my PSA started to anxiously rise. The latest test was Tuesday it’s now Sunday and I’m none the wiser, perhaps that’s better to not know. I tell myself that is so but the reality is it just isn’t so. Now here is where we my gripe makes an appearance. I’ve texted and called twice for my results , no reply except doctors in a meeting she will call you after, that was weds I tried again on Thursday no reply. It’s Easter so I doubt if anyone will get back to me much before Tuesday, seven days of a head filled with worry. No one can tell a stage four cancer patient not to worry, we all become absolute experts in the field of worrying. We all try to fake it but the doubts the frights and the anxiety of the unknown seem to find a way back in.
Scan results are the same, I’ve waited months for results, my nails are no more. The results from scans have been positive but until you get the result there is always that what if that won’t leave you alone. I’ve adopted the stance that I’ve learned to forget I have even had a scan because I know there is no good to be gained but worrying oneself half to death on an outcome that hasn’t even happened. We can not try as we might control any thing that is not controllable and yet this is what we do. Once the dreaming and thinking starts the brain believes it to be true, we experience our thoughts as if they are real. I keep telling myself that my thoughts are not real, just made up parts of my mind. The wait for results just creates these thoughts. It’s unfair that any cancer patient should have to endure what I believe is totally unnecessary waiting times. Is it the system

or is it individuals that I have to blame, I expect it’s a bit of both. A cancer patient is a very delicate being, minds and bodies are fragile and easily broken. A cancer patient can’t be left with their fears when it’s not necessary. We can be strong on the outside but on the inside a crumbling mess. I don’t ask for much from the NHS in general they perform miracles daily, the staff are generally incredible but there are some that need to take some lessons in the art of empathy. A word so vital to a cancer patient. Empathy reinforces good mental health and even belief. The opposite occurs when you feel that you are not receiving the level of empathy that you deserve. I feel isolated, left adrift as if on some desert island with no one for support. I feel in need of reassurance and if that’s not possible at least some basic human contact with my carers. Is this just my experience does anyone else feel this way I would love to know. As I’ve said before I don’t plan these blogs, I write as I feel in the moment, I sometimes don’t even feel aware I’m typing it’s like some invisible force creating the words sentences and paragraphs. This is me this is how I feel.

Love Woody ❤️