I am not yet dead

I wish that people would stop talking to me about end of life care. First it was the GP, then the psychologist. The end result may be that they understand how a cancer patient feels or they understand me better but from my perspective, it’s given me nightmares and I feel really upset about it. I’m not in denial that this fucking disease will see me off but I’m not ready to go yet and I’m not ready to talk about it, either. Yes, some people think I should be ready to talk about it. Hurrah for them. I am a competent person, I have successfully raised 2 children, worked happily for several organisations and run my own business for the last 12 years. I’ve worked with those who have experienced loss and tragedy, got my hands in the dirty dishwater (as my supervisor at the Samaritans used to say) and can talk about feelings readily. I am even able to cross the road and wipe my own arse so when I want to talk about being cared for as I die, believe me, I will do it. Death isn’t a taboo subject in our household but talking about my death isn’t on the agenda yet because I don’t feel it’s the right time. It will be my decision as to when that time will be. I don’t have a lot of control over what happens to me but that is something I can choose to do when I want. So for anyone who wants to approach me, head slightly tilted to the side, and ask in a soft voice about how I want to be cared for at the end of  my life, DON’T! Instead, you can just fuck right off.

Oh, it has made me cross!

That’s not an aubergine, Jerry

I find it very difficult to try and sum up the last week. On Tuesday I bravely go to the dentist. Why bravely? I hear you cry. I haven’t been to a dentist since BC (before cancer) as it is strictly forbidden when undergoing treatment. Just before diagnosis, a tooth broke but did not cause any pain. My last dentist was a also a pushy sales person, always asking me if I wanted to have my teeth whitened or new braces. They also do botox treatments in the surgery and I do not feel comfortable there. It is difficult finding a new dentist, though. I plough through details online and eventually find one which is not too far away and which has a consistent history of good reviews. This sounds good! I arrive bang on time and the receptionist is very friendly, giving me the forms I have to fill in to register. The dentist herself is lovely. She treats me as an intelligent human being and sits me down in the chair while her assistant (I’m sure there is a technical term – maybe dental nurse?) puts an oversize pair of glasses over my glasses. I am glad there are no mirrors as I am sure I look demented. The dentist asks me about my health and spots the telltale sleeve and glove and knows exactly what it is about which reassures me. She understands something of what has happened to me and is not going to try and pump me full of botox. She checks my teeth doing what my first dentist used to do – shouting out and numbering each tooth for the record, noting any that are missing and the condition of each. It is very soothing. She then takes a couple of x-rays which I don’t even have to move from the chair for. She puts her hand on my shoulder and tells me to just relax. The x-rays come back and she asks me to come and look for myself while she explains what she would like to do. She does not suggest I have my teeth whitened nor carry out treatment without telling me what she is doing. She also tells me I have very good oral hygiene which I am pleased about. She is going to cover the broken tooth as it is not causing me any pain so I have to go back to have an impression taken. This is probably the worst part of dentistry for me. I always think the tray will get stuck in my mouth and it also makes me feel quite panicky to have this massive thing stuck to my teeth. I am not looking forward to it.

We also had, of course, the hospitalisation of Mr Mason Snr and the venturing out of Mrs Mason Snr. I am happy to report that they are both doing well. We are not sure what the cause of the collapse was but everyone seems to have recovered from their individual ordeals and this has also allowed us to re-open the discussions on moving. We want the Masons Snr to live close to us or in an annexe and will be looking for a suitable house in the spring. We will be moving out of London to a much more rural area and anticipate finding a house with a cottage in the garden or finding the Snrs a bungalow nearby. Mrs Mason Snr has been very much opposed to this in the past but the events of last week have gone some way to convincing her that this would be a good idea as we would be on hand to help if anything happens. The fear generated by this kind of incident is immense. Mrs Mason Snr clearly thought her husband was dying and I can only imagine the terror that induced. No wonder she felt confused and upset. I plan to continue the gentle pressure to encourage them to live near us.

Over the weekend I feel very tired and headachey. It’s the consequence of the couple of days before. Just as we are starting to get some equilibrium back, we hear the most terrible news. One of our very good friends has died. This is totally unexpected and after 40 or so years of friendship, the most dreadful blow. It has a very sobering effect on our Sunday evening as we sit and reflect on times we were together and when we last met. I think the last time we were all together was at the local Thai restaurant. Jerry asks me what I think a particular vegetable on his plate is. I say I think it is a very small aubergine and that he can eat it. He eats it. It is not a very small aubergine. It is a very hot chilli. This I did not know. He goes very red in the face and starts sweating. For about 15 minutes he staggers around the bar, drinking copious amounts of water brought by the Thai staff who laugh uproariously amongst themselves (“He eat chilli!”) and mops his face with lots of napkins. It is actually a good memory and makes us laugh. We still have great difficulty in processing what has happened. My sleep is very poor and I constantly wake, tossing and turning. It is the suddenness which is so shocking. And his young age. And the bitter unfairness of it. And his lovely widow who was an absolute rock throughout my treatment last year. Death is so indiscriminate. And we mourn the loss of our fabulous friend. If there is a Heaven, maybe he will meet Lou Reed there who dies on the same day. RIP Jerry. You will be very much missed.

Half an orphan

This week has proved to be a momentous one. On Monday, I hear my mother is not well and is in hospital. She has spent less than twelve hours in a respite home when they call an ambulance for her as she is bringing up what looks like coffee grounds. This, I know, is a sign she is vomiting blood. On arrival at hospital, she has what look like grazes on her nose and her glasses are missing. It seems logical that she has had a fall and probably broken her glasses but the respite home staunchly denies this. As the week progresses, it seems less important yet it is something we touch on from time to time as we sit by her hospital bed.

By the time we arrive on Tuesday, she is not conscious although she can squeeze my hand when I hold it. She is breathing noisily and is positioned so her mouth lies wide open and it is obviously dry and uncomfortable as she frowns and moves her hand towards her mouth repeatedly. At this point, all treatment has been withdrawn and she will only receive pain relief and a swab to provide moisture in her mouth. My niece, K, has worked with the elderly before and is able to confidently do a lot of things I am unsure of.

For 3 days, on and off, we sit by my mother’s hospital bed, holding her hand, stroking her face and talking to her. K stays overnight with her so she is not alone at any point. Driving the 70 odd miles each way every day, stopping en-route to drop Dog off with Mr Mason’s parents, is exhausting. I squeeze a meeting in on Wednesday morning along with my usual group at Maggie’s but it feels as though our lives are put on hold for the week. No washing or cleaning gets done. Usual chores are left and the house goes to rack and ruin. My sleep, which is always variable, becomes worse and I feel beyond exhausted with a cluster of bad fibromyalgia headaches.

Master Mason comes with us on Wednesday afternoon and I am touched to see him gently hold his grandmother’s hand. On Thursday, we travel down earlier and spend just a couple of hours at the hospital before going on to see my father. As we are talking with him, the phone rings and it is K, telling him he should come back to the hospital. My mother’s breathing has been steadily declining but K thinks it has changed in a meaningful way so we take my father back to the hospital. We stay for another hour but the traffic has been challenging for the last two days and we don’t want another late night. K also reassures us the end will be soon but not within the next hour or so. We collect Dog and then drive home, arriving at 7pm. As I am literally on the doorstep, my brother phones to tell me my mother has died peacefully. Her breathing slowed and finally stopped. She had company all the way through her journey and had, I think, a good end.

By Thursday evening I am beyond tired and actually sleep well, heavily and solidly throughout the night. On Friday, I sit and try to catch up with work admin while resting. The surgeon has referred me for a body scan and has marked the appointment urgent. It arrives in the post and is scheduled for when we are taking the first holiday we have had since my diagnosis. The past 18 months have been an incredibly stressful time, mentally and physically. I feel people don’t understand because I know I didn’t understand before I had cancer. I didn’t realise how the effects of cancer keep going, long after the disease is invisible and, we hope, banished. It was only this time last year that it seemed death might be on the cards for me.

On Saturday morning, after a night of sleeplessness and finally dozing, I wake shouting for my Mum. It takes me a few seconds to realise what I’m doing and I can’t remember the last time that happened.
The coming week is going to be a challenge in so many ways. Getting my head back together in time for 2 meetings and a trip to the House of Commons, trying to be competent, chair meetings and appear on top of things. And I realise this blog is pretty much factual without the emotional content. I think that’s all I can do for now.

It’s not my grief

I have been mulling a blog post over for the last couple of days, talking about my life, my weekend, my kids. Until today. I read a friend’s blog post which has rocked me to my core. Her son who has autism died today in the mental health unit he was staying in. He was a young man, just 18 and getting his life sorted. I never met him but I know and like his mum very much and I feel physical shock so I can only imagine how the family must feel. It’s not my grief but I feel it like a punch to the solar plexus. God only knows how they’ll get through the next few days/weeks/months but all I can do is send them love and feel slightly guilty that my family is still intact.