Wednesday, 13 July 2011

4 Weeks on and it's a good day...

I know!  I didn't expect to say that either and, I know there are a few others around me who thought the same.  That said though I don't know how tomorrow will be etc but I am not going to worry about it because today was good.

I sort of dreaded today, a whole 4 weeks to the day since Steve died, it has gone so fast but feels like an eternity.  As every minute passes I still expect a text or call from him, a silly email or just for him to come and give me a hug and ask what I'm up to.  It isn't going to happen but it doesn't stop my brain thinking (somewhere out of my control) that it will happen.

Today though was also going to be a tough one because of something I volunteered to do for .  As many of you know they have supported Steve and I with information and guidance and generally being 'there' since his diagnosis, they were one of his chosen charities, (which incidentally you can still donate to at:  Today BT Buddies have run a course in Wrexham called "Coping Together", it is for newly diagnosed Brain Tumour patients and their carers or partners etc.  It was a full day and included a detailed talk this morning from a Consultant neurosurgeon, Andrew Brodbelt, about the different types of tumour, their grading and how they 'look' and how they are treated.

It made for a tough session but, although learning even more about tumours may seem like closing the door after the horse has bolted, (I had similar thoughts initially too - what more do I need to know other than it killed my Steve?), it was actually interesting and beneficial to be there and hear a Consultant from a different hospital not connected in any way to Steve and not even knowing of Steve, saying what treatments are for Glioblastoma Multiforme (GBM), what the follow up scan timetables are, the difficulties in treating them and their characteristics etc, everything was consistent with what I had heard Steve's consultant say to him.  It sort of re-assured me that Steve had the best care possible and available in this country and, as he outlined the pro's and con's of some new treatments, his concerns about them and reasons why they are not used more this again served to convince me that Steve had the best possible care.  In fact listening to him and hearing about the cancers and their effects and hearing some of the other speakers really made me appreciate even more how brave Steve was and it made me even more proud of him and especially proud of his positive outlook, (notice I say positive? He was NEVER in denial, he always accepted and acknowledged the possibilities but remained positive despite this).

The other speakers today spoke about the psychological effects of living with a brain tumour and Epilepsy and brain tumours.  I could identify with a huge amount of the psychological effects of living with a tumour but they related to me in grief, how I have dealt with losing Steve and how I am dealing (or not) with where I am "at" right now.  I suppose it is the same as a tumour victim may grieve for the future they feel they may have lost, I certainly feel Steve and I grieved for the last 9 months on the loss of our future.  That doesn't mean sobbing all day but it means accepting that we are not going to get old together and have matching OAP Scooters, we wouldn't end up sat like Waldorf and Stadler (the old guys in the box in the Muppet Show), bitching about people in the street and we wouldn't ever be making the mistake of getting our dentures mixed up in a glass in the bathroom. 

We grieved not for what we had lost, because we cant lose old age because we didn't have it but we lost those thoughts of an old age.  We moved our goalposts a little and aimed for being on our boat within 12 months, for perhaps going on a holiday to see Leon in Israel later this year and we planned to make Christmas presents again this year so we could give handmade gifts, (which we knew would become even more precious if one or other of us were not around).  We didn't envisage having to bring the goalposts SO close but we still lived a full life and planned for the future as best we could, (incidentally 'we' will still be doing most of that it's just that the responsibility for them now falls solely to me).  Anyway, after him the Epilepsy woman spoke, if I am honest I didn't pay a lot of attention as it was not relevant to me, (and Steve's ONLY seizure/fit was the one that saw him off so not a nice thought).

I spent a sizable amount of the day too talking with other patients and carers about their tumours and also about Steve and his/our coping mechanisms.   A few people asked where he was, why had he chosen not to come etc and when told why he wasn't there I got the looks of shock, embarrassment, sympathy and confusion as to WHY I would choose to be there so soon after his death.  One lady burst in to tears on me... (I didn't like to tell her it should be me crying).  I explained Steve would want to help others and, if my being there helped others then that is what I will do.  I explained I volunteered and could have opted out at any time but chose not to.  Some 'got' why I was there and some didn't but they each thanked me for coming and for being so open and honest and that was appreciated.

This all seems pretty OK until you realise that this afternoon I had a small presentation to do for , as I said I was a volunteer and Natalya was naturally cautious about me doing it as she was also only too aware how soon it all is, it could have gone one way or the other with the potential for me getting Brain Tumour overload and having a complete meltdown.  As you guessed i didn't have a meltdown, the presentation was well received and I felt better for being able to do that and bring a little hope or comfort to those in the room, one said I was an inspiration, I didn't feel it but I thanked him.  I just did what I thought was the right thing to do, right for me as well as for Steve and for BT Buddies.

So there you have it, that is why it has been a good day.  Just 4 weeks on from Steve dying I have been able to help others on their brain tumour journey, something which was (is) devastating (not devestating as one of the presenters today had written),  has now been turned into a positive and is helping other people.  Just another way Steve is continuing to help people even AFTER his death.

Following on from that I have come home this evening and had 2 really nice messages, one from my Aunt (although she is only really old enough to be my big sister, but as she hates Aunt I will use Aunt) and from my Sister, both of which really made me smile.  Thank you both xxx

And finally, in proper newsreader fashion I thought as it is 4 weeks since Steve died I would post a pic of him.  It is one of my favourites.  I love the glint in his eye.  This picture was taken in Chester the morning after a large night out in Chester.  We had been outside a pub or club the night before and looked in through the hat shop window.  There, we both saw the red top hat, we both turned to each other and said, "I want one".  We loved the look of them and as we both had evening tailcoats which we used on stage we decided to buy a red hat to wear with them.  We thought red basque, stockings or fishnets, tailcoat and top hat..... there are pictures on of Steve (as Miss Whiplash) in that very costume.

We found the shop the following day and despite our horrendous hangovers we both got SOOO excited about having new hats to wear, we bought one each, strolled around town like the cats that got the cream and  then went home not buying another thing because we had only gone for our hats. I always thought Steve suited a hat.

This hat is the very same one the funeral director, Shirley, wore at Steve's funeral, it seemed a fitting tribute to him for her to wear his hat in honour of him.  She looked good in it too but not half as handsome as Steve.  I know I am biased but I still thinks he looks great considering he, (and I) had the mother of all hangovers!

Well I shall say goodnight now, sorry it's a long one but hopefully you feel better for reading something positive, I certainly feel better for writing it, for thinking it and for being there today in memory of Steve.


  1. What a lovely photo :-) I always Smile when I see that slightly mischievous look on Steve's face :-)

    I had been so worried about you today, I tried to give you as many ways out of it as I could, as I was all too aware of how 'fresh' all of this is for you ((HUGS)) I was very grateful for your updates through the day and even more grateful to you for helping me and BT Buddies by attending. My first 'report' back from another speaker gave a glowing report of how the day went and how wonderful you are - I, of course, already knew you were ;-) You did yourself, BT Buddies, me and Steve proud today and I am so glad it was a positive experience for you.

    I know I probably don't have to say this but, thank you also for looking out for and helping me in recent days/weeks/months too. Every card, call, message (and blanket!) is appreciated more than you could possibly know - I'm so glad the 3 of us became close friends (though I wish more than anything it could have been under better circumstances) xxx

    A restful / relaxing day for you on Thursday now please! ;-)

    Goodnight xxx

  2. Of course you were wonderful, amazing and quite simply marvellous. In the nicest possible way we never expected anything less :) Whatever you and Steve did and now you do will always be delivered with 100% plus commitment, passion, authenticity and results! Hugs xxx