Life’s all a bit weird at the moment. Things that are happening in the world around us is mind boggling… (Donald Trump campaigning for president is one of the weirdest things ever!)
This year has been a bit of a year for weirdness. Life as we know it is ever changing and not always the way we want it to. Brexit is a huge thing, world leaders changing, wars and uncertainty everywhere.
Living with canSer is uncertain enough but when everything else around you is also up in the air it can make for quite a hard time. I have loved this summer and I was so sad and reluctant to see it finally leave. I dug my heels in as much as I could but I couldn’t stop the season from changing and now here we are almost at the middle of October.
I feel unsettled, unnerved. For canSer patients control is something we so desperately want yet it feels like I have less and less control over my life and this disease than I ever did. I’m not saying there is no control over my disease at this point but I feel I’m teetering on the edge of a cliff. Everything is so nearly going to crash around my ears and there is no way I can save it
What do I mean? Well physically I am out of control. I have not managed to gain control of time management so feel like I am bouncing from one wall to another trying to get ‘everything’ done. What is everything? Normal day to day things plus a bit more….. I haven’t managed to get my groove back with my morning rituals yet. This is not good.
I haven’t been feeling my best since I went to have TACE last week. Obviously I am not going to feel 100% as it is chemo but I have felt really cold. So cold I am wearing layers in bed and gloves in the house during the day. I simply cannot warm up. I am anaemic so that’s not helping. Feeling unwell has meant I don’t want to exercise and actually couldn’t after having surgery. Exercise would in fact sort the cold issue out, but there is that chicken and egg thing. It’s mainly due to anaemia and my blood count being so low. I just stop talking about it and do it. Get that blood pumping around my body.
Treatment at Prof Vogl’s last week was good as always. As ever things are never the same twice and this time I had the surgery on my left side. Maybe I am more sensitive but it hurt more therefore the Prof gave me more anaesthetic, leaving my left leg really numb for much longer than it should.
I did collapse at one point in the hospital corridor. I couldn’t feel my leg at all and it went from under me and I went down like a ton of bricks in a heap on the floor. It didn’t hurt at the time but later my knees, ankles and feet were really sore. Now it’s just funny to think of me in a heap… So very Del Boy!
I’ve been well looked after by my Bear since then and over the weekend but the usual side effects come and go. A bit of nausea, sickness, feeling generally low and we all know what that does, sadness and fear creep in. Sleeping is still a challenge as I still have the cough. The cough is due to a tumour on touching my bronchial tube. Now this could be inflammation from the tumour that was ablated in August but either way it worries me and it’s really annoying. I have to sleep on my back so that I don’t get irritated by it. This is not good sleep. Too many dreams and weirdness happening.
See there it is- weirdness again. Even X Factor is really weird this year!
So there is the physical side of things. Mentally I am all a squiff. I can’t focus on what needs to be done. One day is good the next is all over the place. I have no desire to think about holidays or Christmas. I just want peace. As does my Bear. I worry about him and how he feels as life is so very difficult for him also. Work has its ups and downs and things can feel like they are ganging up on one. It’s finding a fine line. My list of things to do keeps getting shorter then longer and this is the same with trying to have a balanced and healthy life.
We keep putting so much pressure on ourselves to maintain a happy, memorable life but the truth is it’s not possible to live like that. I am desperate for some time out. I know- that’s coming from me! But what I mean is- time out from myself and my thoughts and my fears for the future.
I am so aware that with my bloods being low, that infection is very easy for me to catch. And I also know, that is when life can ebb away like a tablecloth being pulled from under the crockery. It’s so fast but then it’s all over. Obviously I don’t want to be ill or die. But I do need some normality and I am just not feeling it right now.
I am certain every canSer patient and their loved ones wishes for normality.
I know Bear is desperate to have a quiet time going into autumn and winter in his home life, his mind-set and his business. We so want to have it all but we can’t.
I know I am rambling but this is how my head is. I feel tired. My body hurts. I don’t know why, as I do rest a lot. But I don’t have routine and focus. I have not been listening to my ten point plan. I need therapies to help with the unloading. I need mindfulness for my sanity and clarity. I need focus so that I can help in business. I need happiness and laughter as it is so healing. I need good nutrition to heal my body. And I need to love…. This never goes away but maybe it’s not shown as much when I am fearful.
Treatment still goes on. I am having a scan at the end of this month then I am off to see Dr Nesselhut for more immunotherapy. There I will discuss and maybe book for photodynamic therapy- finally.
Prof Vogl keeps talking about me having a treatment holiday. I don’t really know why. He doesn’t say much. He did show me images of my lungs before I left last week. The one that was ablated is necrotic and visibly holey in the middle. I so hope that it stops growing now. The left lung has some very small tumours and he doesn’t seem hugely concerned about them. I wish they would all just stop. Give me time and let me have strength to carry on. Other than my cough and low blood count I am ok. I don’t have any other illness and nothing should hold me back from having a very active and happy life.
Today is mental health day. For us survivors and those close to living with terminal illness, mental health is something we all have to deal with. Life is so very weird and is getting harder and harder to keep normal and un-weird! I’m not sad. I don’t feel sorry for myself. I just feel weirded out by so much stuff. And that is all to do with my head, first and foremost. Can I have a new one please?!
Now my website has been saved by the brilliant Laurence Caro; https://www.carocreative.uk/, I will be going back to my ten point plan and starting a fresh. I need reminding- as habits need forming again.
If you wish to join me then click on the link; https://www.triplenegative.co.uk/ten-point-plan/
If you feel drained by this blog I apologise, but I know that the Universe is in a pickle at the moment . We’ve just got to hold on until it settles down and try not to be weird.
One final thing- It’s Breast Cancer Awareness month and our lovely dragons are in the pink showing support again…. What are you doing to show support?
Love you all. X