So far this month, I have had more than 10 seizures all lasting around 15 minutes. At the start, I went twice to A&E, once by ambulance and then I was transferred to North Staffs Hospital. My throat was screened for signs of thinning of the blood vessels and I had MRI and CT scans. They found a bleed to the right-hand side of my brain, indicating the stroke caused by a blood clot.
I was prescribed medication and discharged the next day. I was told to keep a diary record of the seizures, and if they lasted longer than 15 minutes I had to call 999. I had two in one day last week so I had to go back to Leighton for more scans to compare the MRI results. There was no change, which was good news, and I have another booked for the beginning of August, along with a 24-hour heart monitor and ECG on my brain with neurologists to try to understand what is happening and where the blood clot originated. I’m also under the surgeon at Leighton who wants to investigate further what caused the blockage in my bowel in the first place, under North Staffs for my stroke treatment and The Christie for ongoing investigations and treatment into my cancer! Never-ending appointments! The neurologists at Leighton think the seizures I have been having aren’t strokes but epileptic fits instead, caused by the first large stroke. It is all so overwhelming and confusing when you feel so ill.
Now at the end of July, I am feeling so ill. I am lying in bed talking to Helen who is taking notes to bring my story up to date. It helps in a way, to make sense of what is going on when I put it all in order and say it out loud. I have strong pains in my tummy where the cancer is – like ‘stitches’ – and pain in my back. I am so weak and wobbly it is hard for me to walk and stand without feeling like I am falling over. The seizures keep happening. I think I had one in my sleep last night as I woke suddenly with a blinding headache and the remnants of tingling in my left side. They leave me feeling totally exhausted and weak, unable to do anything and they have affected my appetite. I lost 12kg whilst I was in hospital for a month and now I am suffering from nausea and actual sickness. Something is happening and I know it’s serious. I can smell the smell on my hands again that I first smelt with the cancer. A stale musty smell that only I can detect. It has always been my intuitive signal to say that my cancer is active again.
I am waiting for the call from Christie now to give me the results of my tests and scans. I feel it isn’t going to be good news, but I am desperate for the call as the not knowing is the worst thing. Once I know, I can try to accept the next part of my journey, but my mind is just going round and round at the moment out of control. I know they will be trying to work out how to treat me from now on. The neurologist said that before they could give me more cancer treatment they would have to resolve the problem with my head first. It is not straightforward any more, if it ever was! I am exhausted with all the tests. I feel sick with all the anxiety and symptoms I am having. I am so weak and fatigued that I feel 10 years older than I actually am. The tiredness doesn’t improve, however much I rest. I tell myself to trust and let go and hope that God will find a way to treat me to give me more time.
I really don’t want it to be the end now. Not knowing is so hard and if I know I can try and give myself a good talking to. And yet, I feel blessed to have had the five years that I have had. It is more than the doctors expected. My life has really come together over the last five years and I have been so happy. My relationship with all my children is so wonderful now – deeper and more honest as I am able to show more of myself and be more emotional. Also, the last five years with Bob have been wonderful. We get on so well and I love the way we can talk and laugh together. It really has been a new experience for me and I have no regrets. Over the last five years, I have listened more to my inner voice and have learnt to trust myself, whereas before, I would have been afraid to tackle and commit to situations and people. I have no bitterness, no regrets. Helen has been the biggest help with my emotional healing and I really don’t know what I would have done without her in my life.
It feels as if the important circles in my life have now been joined up. Some small ones haven’t, but the ones that really matter have.
It is 28 July. Hopefully I will get the call from Christies today.