Getting out and about

Over the last couple of weeks I have been leaving the house more. My friend Daphne made a huge sacrifice and abandoned her husband and 14-month old son to fly transatlantic and spend a week looking after me. They weren’t so much abandoned as well looked after by grandparents but it is still a tremendously kind thing to do. It was a week filled with laughter and we even managed a couple of lovely outings while she was here. Each was a logistical nightmare as I can’t see well and still need help to walk and navigate so wasn’t much help to Daphne who drove a manual hire car brilliantly and most of the time was on the correct side of the road.

I had a rather depressing meeting with Dr H where we talked about my inability to go out in crowded places. He explained that when confronted with a sensory overload (which frankly is two things at the same time – listening to the radio and trying to have a conversation, talking and walking – I have a new found empathy for Gerald Ford) my brain doesn’t know how to process the information and just shuts down. So when I’m in crowds and people are walking towards me, I just freeze in panic.

I also told him that I can’t remember things, especially important dates (I have missed a few birthdays lately – sorry) and I can’t multitask. His diagnosis? “You’ve turned into a man.”  It is lovely to have a laugh with one’s physician but on a more serious note he said I shouldn’t worry and just write a list. He said I am a “new me” and I won’t ever be totally the “old me”. I need to reflect and consider what the “new me” can do whilst celebrating the little things that are “old me”. Hmmm I shall have to work on that one.

After Daphne’s tearful return we went to Belgium with Adrian’s family to celebrate his Dad’s 70th Birthday. Adrian did all the driving and I slept the whole way there and back. We had a super time with lovely food in a place called Ave-et-Auffe which is pronounced ‘ave-it-off. Negotiating hills and cobbled streets was challenging, but the scenery was beautiful and it was my first night away since hospital so it was good to prove we can do it.

Last week my Dad took me to the Gauguin exhibition at the Tate Modern for my birthday treat. No-one realised the irony of taking a blind woman to an art gallery until we arrived. I had my nose pressed so close to the paintings I was in danger of setting off the alarms but it was worth it – it is a wonderful collection of his paintings, sketches and letters from his travels around the world.

Next week I am back at the JR for another MRI after which my team should decide on the next phase of treatment. My hair is growing back quite well. Now rather than an undercut I have more of a mullet. Still there is seven months to go until the wedding and if anyone knows of any Miracle Gro for hair, please let me know.

My mullet

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About tarquinchronicles

I have recently been diagnosed with a brain tumour which I have called Tarquin. Tarquin was a Roman emperor who was inordinately cruel and vicious but who was eventually banished and died in exile. This is the chronicle of the rise and (hopeful) fall of Tarquin the Tumour.

5 thoughts on “Getting out and about

  1. The hair’s coming on remarkably well. Within 7 months, your mane will have returned, I’m sure (at least to a length for the magical Liz to “do something with it”). It’s great to hear you’re beginning to venture out and about – can fully appreciate the panic in crowded public places. Just hope yours wears off with time too. Look forward to enjoying a celebratory drink or 5 with the new you, then xxx

  2. Loved every moment of my trip! You look beautiful (as always) and are recovering like a star. Wish I could visit more often. xoxoxox

  3. Hi Justine, it is wonderful to hear the progress you have made in such a short space of time. I am sure your emotions are all over the place, trying to come to terms with losing part of the old new and getting to know the new you better. Baby steps is what it takes, don’t run until you can walk. I know it’s okay for me to say I am not in the position you are in but in the past I have faced changes that have upset me and changed me that were not part of the original plan I had for my life. These changes have not been life threatening likethe one you have come through but none the less it changed me. Whether it has made me a better person or not I think my friends could answer that better. It has however made me a stronger person, thankful for small thinks and appreciative of the life I have now. I think you will inevitably go through a period of mourning for the old you and your old life but you are a fighter and this will no doubt pass and you will pick yourself up dust yourself off and continue on lifes road to be the best that you can possibly be. With all your wonderful friends and family by yourside anything is possible. Hope all went well at your last appointment. Take care and God Bless, Beverley xxx

  4. Dear Justine

    We’re thinking of you so much.

    PS. I believe you’re a Welsh rugby fan – there’s a Wales vs SA match on this coming weekend. I’m a South African rugby fan with a Welsh hubby, so it will be quite a match (and war at home, watching the match this weekend – tee hee)! I normally support Wales unless SA is playing, ofcourse, however, in this instance, I will have to support South Africa ! 🙂 May the best team win. I hope you can get to enjoy it over the weekend, should be exciting. Take care of yourself,

    All the best
    Carole & David Cox xx

  5. My best friend Annie knows your Mother through work and saw her on Friday at some posh bash function. Annie sent me your link, as my Mum died from cancer two years ago. She never named her cancer but certainly had your attitude and was always on full attack and lived every minute of her amazing life. I have to say, that I do really commend you on name and reason, when Annie first sent me the blog, I had incorrectly assumed that you were called Tarquin…for some reason Alice bands and labradors sprang to mind! Until I read that he had been a beastly Roman Emperor, so I have also learnt something today.
    Thinking about the naming theme, Rommel would be another apt name and then Montgemory and Patton could smash him to bits!! Or another great name would be Moriaty and Sherlock and Watson could always be on the case then to scupper his evil plots!
    I will continue to read your blog as it is incredibly honest and I do I love your humour.
    So keep on smashing away at Tarquin and I wish you and your family and loved ones a fantastic Christmas, enjoy yourself to the max!
    Best Wishes
    Nicola xx
    If you haven’t read it John Diamond wrote a fab book when he was ill with throat cancer called ‘C – Cowards get cancer to’ which was a compilation of his weekly article in the Saturday Times. If you haven’t read it, I would really recommend it, if you can get a copy as a book or audio book.

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