Letter from the North

Day 2, the morning after the night before

Day 2, the morning after the night before

As is usual for me, I was awake before 5am and I am here at my desk at home at 6:50am, that’s about the time I usually arrive at work. I am an early starter and that has been the case since I was a paper boy, 50 years ago.

There has been an awful lot of love on Facebook, especially on Teresa’s re-post. That is as it should be and as expected.

  • She is active on FB and Twitter, I am not
  • Whilst I am a social creature, it is very hard for me to do, both in terms of how hard I have to work at it and the impact it has on me.
  • She is the one that needs it most, she has to watch the person she loves deteriorate and die, long before she expected it to happen – 2 years not 20 years!

That said, I do appreciate all everyone has said, whether it is comments on my blog, my FB page or Teresa’s.

Also a lot of people have been in the situation where they don’t know what to say and so either say nothing or say what they feel they can say and feel frustrated that it is not what they want to say because there is no vocabulary for this situation. That is why I have introduced the word “bugger” to the situation. At one time, I asked Teresa last night to tell me what she needed from me. She said, right now I need to say f*ck, now Teresa doesn’t swear (I do!) and even if she did, she would never use the “freddie” word (an in joke). I agree with her it’s a right f*cking pain. Cancer is horrible, it’s OK for us to call it nasty names if it helps us cope or talk about it.

I know that it’s hard to know what to say. Cancer and death are not things normally talked about and yet they are incredibly common. Fortunately, nowadays, many cancers are curable, indeed mine would be if it had been caught sooner, but it wasn’t (more on that tomorrow). Death however is waiting for all of us.

I needed purpose to my life which is why I started the letters from The North, talking about living as an autistic and a gender diverse person. I also need to find a purpose to my death and I have chosen the same path, to bring out in the open what it means to go through this and to try and encourage people to engage and talk about it.

There’s nothing worse than feeling isolated and there is no need to, there is just the fear, both of the person with cancer and/or facing death, and of their loved ones and those around them.

I’m not fragile, I won’t break, please engage with me, compare notes, make jokes, help me make this less scary for everyone who is facing it.

When I asked for my prognosis, the consultant said I was very brave for asking. How awful is that? I cannot tell anyone else how to face this, but I can say that I was not brave for asking I was being practical, death needs you to be practical, if I buried my head in the sand I would be leaving Teresa to pick up the pieces and sort out the mess after I’ve gone. How cruel is that?

Now I have a timescale I can make sure that she is as prepared as I can manage and I’m not leaving her with MY mess to clean-up.

Asking for my prognosis was not brave, it was loving, it was also VERY autistic, we autistics do like control and not knowing is far worse than knowing.

Yes, we are both in shock, not because we didn’t expect the news, because we, and especially I, were sure. But because it became the first day of my last days (well years, I hope), in a sense, that clock started the moment he told us.

The side effects of the drug I am starting on are many and I have no idea how they are going to affect me, but being me, I will be documenting them.

Hooray, there is no contraindication to drinking beer in moderation so, once I’m off the heavy pain killers, I will be back at the North on Fridays.

That said I am going to be back at Treliske every month for tests and scans to monitor the tumours’ growth or, hopefully, lack of growth and preferably shrinkage.

To quote the Consultant (well paraphrase given my memory)

You will be here monthly for some months for me to monitor, if you behave yourself that will be every two months. I asked, and he confirmed, that it was the cancer not me behaving myself he meant.

That said, me and the cancer are both here in this body and I need to find a way of staying the majority partner for as long as possible ????.

Well, I have managed to type all of this with two hands, but I think I need to give my right arm a rest now.

Teresa is going through hell right now, but I think I can say for her (she has checked this blog and agrees), the best thing you can do is not to try and wrap her in cotton wool, and not be concerned if she bursts into tears because I know that’s her greatest worry (well apart from me dying that is ????), that people will be uncomfortable if she gets upset.

I want her to return to her normal social activities while this is going on. We will both burst into tears at times, it’s OK, it’s normal and more to the point it’s healthy, trying to bottle it up and be brave for others is not healthy and I want her to be healthy (in mind, emotion and body).

The Bean, at Home, Thursday 23-Nov-2017

7 Comments

  • Rosie Skeet

    Bean you are doing a fantastic thing to help others by breaking the taboo and actually saying how you feel and inviting communication. I am certainly not the only person who while normally a relaxed communicator, suddenly freezes and become terrified about interaction with people who have cancer. We are scared of saying the wrong thing as we are not sure how our friends or relatives feel about anything. The person then feels cut off instead of supported.

    It maybe that sometimes you don’t want us to say anything but I am confident that you will tell us this and we will know where we are.
    In addition to crying I have been saying f*ck and bugger and I am sending my most positive vibes out to you both.

    • Bean

      Yes I would say if I didn’t want you to say anything, but it’s not going to happen. There is no such thing, for me, as a bad comment or question, fear of speaking is the only no, no

  • Joyce green

    Thank you for writing all you have . I have been thinking of you and Teresa a great deal and having more information is always good and to have it so clearly put is a bonus.
    I am pleased that the drugs allow for some drinking of beer – maybe we can join you for one when you are back at the The North ?
    .Sending love
    Joyce x

    • Bean

      Thank you Joyce, you would be very welcome.

      Once I’m back at the North I will announce it in my usual subtle and low key way 🙂

      Mind you, one of the side effects of these pills is to change my taste buds. I hate the thought I might start preferring lager to real ale, that really would be a sacrifice 🙂

      Bean xx

  • Kate Mole

    Hi Bean,
    I am glad to read that you are at your desk; I am delighted that you are able to drink beer. And I am impressed by your remarks about a purpose in life and about everything being open for comment.

    That being the case, may I say a couple of things? One: I know it is difficult sometimes for people to know what to say when someone has cancer and when they have had a poor prognosis, but (only in my humble opinion of course), it doesn’t matter too much what they say, as long as they say something. We know they mean well. I had cancer in 2014 (not as bad as yours), and people were enormously, heartwarmingly kind about it. A great many of them offered assistance of all kinds; some said things that helped; some just said how sorry they were; some said nothing but just patted me and opened car doors. All of it was appreciated, very much. The only thing I found hard was people ignoring the matter.
    And two: arising out of this – I think anything (or almost anything) you want to do to get through this is OK – crying, rationalising, philosophising, talking about death – the whole lot. Please do. I’ll be reading your blog whenever I can. I’ve read and commented on two similar ones before. I believe it helps people to write, and you are an expert at it.

  • Victoria Osborne-Broad

    David, I think your blogs should be compulsory reading for everyone diagnosed with cancer and anyone who cares about them. Especially this one. I’m sure I’m not the only one who finds it hard to know what to say and may end up not saying anything because of not knowing the right thing. Please keep writing. And you make it so easy to read and understand what you’re saying. And still keeping your sense of humour too. Wishing you both everything that makes you feel supported.

  • Carol Newland

    Dear Bean
    I don’t know you but I know Teresa a little bit through the LitFest and I would recognise you if I saw you out and about …. a striking figure in your lovely dresses. I am deeply touched by your writing and would like to thank you from the bottom of my heart for sharing your journey. As you say it is so important that we talk about cancer and dying but it is not the norm in our society. I was diagnosed with leukaemia over a year ago and have been fascinated to see how my different friends and acquaintances have reacted. As you say, everyone does it the best they can and that is OK.
    Wishing you the very best and keep up the good work. I can’t think what, but if there is anything I can do please let me know.
    Sending you love and strength
    Carol

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