Saturday 31 December 2011

Charity Fundraising Ball

Last year, when Kevin was in the Hospice of St Francis, I tweeted @bowelcancer (Beating Bowel Cancer), Kevin had raised money for them in September that year by walking part of the Great Wall of China, a minor miracle when you think how ill he was. He started to go down hill after he got back. He admitted he had been mainly running on adrenalin. But he wasn’t running, he was walking, and Kevin really missed running. I will never forget him trying to (and succeeding to) run after major lung surgery which failed to get rid of the secondary cancers anyway.

I asked them if they would reserve me a place for the London Marathon, it is 11 years since I last did it, but Kevin loved running it, and I wanted to do something positive in his memory, so now I am going about the business of raising money, as well as awareness of Bowel Cancer.

I have organized a Charity Ball, with a Sweethearts theme (ish, I’m not really a theme kinda girl) for Valentines. It will be held on Friday 10th February at Old Albanians Rugby Club on the Harpenden Road. It will be from 7 onwards, (dinner will be at 8.30pm) and tickets will be £50 each. I have 120 seats on tables of 10. The dress code will be black tie and posh frocks and there will be a three course meal and the band Soulfish. If you are not aware of them, check them out here http://www.lemonrock.com/soulfish.

It will be a great way to celebrate your valentine, so please get some tickets and come and support a good cause.

In fact, there are number of ways you can help me, direct message or e mail me if you want a ticket or a couple of tickets or a whole table of tickets. Also if you want to donate a prize for a raffle, however big or small do the same, your name will be added to the list of contributors/ sponsors, and it is good advertising. Alternatively if you are a company you can sponsor the event and your name will also be included in the list.

Friday 30 December 2011

Christmas without Kevin

I spent Christmas day in Derbyshire, in a hired house, with Kevin’s family. It was a lovely day, but all the more poignant for me that I was with all his family without him. It felt very odd. I am glad I did it though, it was a chance for us all to acknowledge the strangeness of the situation together. Perhaps all the stranger for some of them, because Kevin may not have been with them on that day anyway, and it was all the more noticeable to me, because what bound me to them was him. The Menace had a great time with his cousins, he played brilliantly with the little ones (a 2 year old and 2 and a half year old).

Kevin was an absolute baby about Christmas, as his brother said “he was a pain”, he never really got over the childish excitement and used to wake me and the Menace up telling us “Santa has been!!” so the Menace would race out of bed in an excited frenzy. He insisted on the morning being a frenzy of present opening, it all HAD to be done in one go and then after that there would be a trip to the pub, then an afternoon of eating and telly. This is not my ideal of Christmas, but itwas my husbands’. This was the first year that the Menace had to wait to open some of his presents until midday.

We did do a trip to the pub, and I raised my glass to him, then during our meal in the afternoon the Menace asked to do the same, bringing tears to all our eyes. I found myself very busy at that moment sharing out the Christmas pudding! (He doesn’t like it when I cry). I really missed him but also realized that I now have to make Christmas my own. I will keep up some of the traditions he bought to it, I like going to the pub for a drink at lunch, usually to catch up with friends, although not in Derbyshire. I am trying to keep up our Christmas fish collection (we have some very expensive decorations which we have built up over the years), even though the shop has closed down. Thanks to Jo Morton of Morton and Sedgewick, a friend of ours, who bought some to sell, I can carry on the collection. But I am keen to reduce the present frenzy in the morning, mainly because I feel the Menace feels that what matters is to accumulate lots of presents, not to appreciate them as he gets them.

Certainly for me, the meal is a focus of family attention, this was less important for Kevin, but then he never had to spend all of January on a diet to get over the “eating season”. I now realize that I must build my own traditions and make it a family day for us that still matters but is our own. Someone did say to me this was a day that would stand out as different, and it did, they were right. I have made up my mind though, to move forward, and do to so bravely. Change isn’t a bad thing, it is necessary, tradition is good, but only when justified. We have to acknowledge that we are different to how we were, but that is okay too. Getting through the Christmas season has been hard, but also has given me a sense of freedom, it is okay to just be us (me and the Menace)!!

I don’t know if I am explaining myself very well here, about a week before Christmas, the dog was ill and wouldn’t sleep, I came downstairs and we both curled up on the sofa. I had a really weird dream, where Kevin came to see me as a ghost, all excited about Christmas,, in my mind I was worrying how the Menace would take this, I have spent all this time making sure that he understood the finality of death, and here was Kevin, I could almost feel him, it felt very uncomfortable, and I woke up a bit unnerved. In my dream I was worried how Kevin’s ghost, coming to join in Christmas, because he so loved it, would work. I have taken this dream to be my anxiety about how to do Christmas without Kevin, he didn’t call me the Grinch for nothing, but I have now realized that it is okay to be different, to move the journey forward, and not live in fear of a memory. I can now look back happily but also look forward happily too. I suppose this is what Kubler-Ross calls acceptance.

First of all, I need to do that January diet, and get back into running, as the London Marathon is not far off and I am doing it in his memory, for Beating Bowel Cancer, so onward we go, perhaps a bit quicker than I have been going!

Saturday 24 December 2011

Seasonal Festivities – Part 2

I also went to the charity Carol Service with my dad that I have mentioned before. This was laced with awful memories for me, from last year. Kevin had really wanted to go, even though he had been in a hospice to manage his pain right up until that day. Our friend Sandra drove us there, and we made it to the service, but the seats for so uncomfortable for Kevin that we left in the middle and he slept in the hotel.

I was pleased that my dad invited Sandra and her partner this year. It was his way of saying thank you to them, as they were such a support to Kevin and I and also put him up when he stayed for the funeral. We set off very late and arrived after the start, this was a good distraction, worrying about the time stopped my thinking too much. Although when we got in, we were sitting in the same place as last year, and I have to say I had a bit of a wallow in bad memories. Kevin had wanted to go because this is a special event, the Carol Service is in Hanover Square and all the lessons are read by famous people. One year Kevin was very pleased that he stole the RESERVED sign from under June Whitfield and kept it as a souvenir! Sandra was enjoying herself so I didn’t feel the need to break down, in fact that wouldn’t be my style anyway. We then went to the champagne reception at Christies and enjoyed circulating with people who seem so much greater than ourselves. Actually the evening was lovely, and not nearly as bad as I thought it would be.

We have also hosted a few events ourselves, something we couldn’t do last year. I had the class meet-up at our house. This was hugely exciting to the Menace who could not go to sleep, knowing that all his friend’s mums were downstairs in our house, and he spent a large part of the evening wandering around in his pyjamas complaining how noisy we were and consequently lost his voice!

I had also promised the Menace a Christmas party, as he had wanted a Halloween one and it ended up not being at our house. We sat down to plan it and I said to him “9 friends, no more”. By the time we had both finished the invite list was 18 children if you included my own son. 18 children being over excited in my house wasn’t a very appealing prospect. A friend of mine has set up a company selling parties in a box called Happy Frogs Parties, so I turned to her for help. We bought a spy party. I was still terrified that the kids would race through it and then get bored. They really enjoyed trying to guess who was the spy, deciphering codes and finding the bugs. I had planned a few games of my own if needed, as I was convinced these kids were going to trash my home. In the end only 15 came, and they were as good as gold. They worked really well on the team games and were engrossed in the activities. In fact, the opposite of my fears happened. We ran out of time and did not complete all the games. We were so engrossed in making perescopes that I forgot the time and realized that the parents were picking them up in 5 minutes and I still hadn’t fed them!

I may very well use these parties again, they are reasonably priced, and kept me and the children sane! Not once were their tears (something that has happened at all previous parties).

The weblink is http://www.happyfrogparties.co.uk/

I think that the sleepover party looks very good and may go for one of those in the summer holidays to keep a group of kids happy. I don’t see why it has to be gender specific ( I suspect designed for girls in mind).

We are keeping busy and this helps.

Friday 23 December 2011

Seasonal Festivities – Part 1

It is two days before Christmas, and the run up to the 25th has certainly been a surreal experience this year. It has been a mixture of last year’s memories, with a smattering of its own.

The Menace is very excited about Christmas, as one would expect of any seven year old. The more the build up happens, the more excited he gets. We have been to many parties and events, and even hosted a few ourselves.

The Menace got invited to a party at the Hospice of St Francis in Berkhamsted. This is the hospice where Kevin died. The Menace wasn’t sure he wanted to go, neither had is dad been, when he went there either!! When Kevin had been admitted there in January I had repeatedly asked The Menace if he wanted to go in, but he chose to stay away. The hospice had approached me afterwards and asked if I wanted support for the Menace or myself, but I declined, as we had already built up a relationship with Grove House Hospice counselling team, which is much closer to us (right on our doorstep to be honest). So I told St Francis I would go back to Grove House. When the invite came through the door I asked The Menace if he wanted to go, I explained it was a party for bereaved children and what that means. He looked at me and said “I’m not sure.” The party bit sounded good, but going to the hospice that he had so actively avoided didn’t quite hit his agenda.

When The Menace had play therapy, one of things that he did was play a game every week in the doll’s house, where it was a hospital with a sick daddy inside and a little boy on the roof, with some monster s(I think he used the Harry Potter monsters that they had). He play this consistently, until the week I went in ( I only went to the last session, that is how they do it). The therapist told me about it. I felt that he needed to go to the hospice to put those monsters to bed. So I enticed him with the lure of Santa and he decided he did want to go.

Nearer the time he changed his mind, “Mummy I don’t want to go.” But I explained that I had already accepted and we were going. On the day we drove there, this was a new experience for me, as during the time Kevin was in there, I didn’t once drive, I was always driven. We did get a bit lost, but found it eventually.

I have to admit that I haven’t been back since I left there, I also felt the need to stay away. I could feel my emotional insides closing up as we drew up there. Some of those awful memories were flooding back. But I put my best foot forward and in we strode.

I’m so glad we did go, both of us got so much from it. The Menace is very happy with his remote control car from Santa, and has told people about how he went to a party for children “like him”. I got to meet and chat to other people, of similar age in similar circumstance, not something I have been able to do, on a face to face basis.

I also noticed that some of the children there knew each other. I became aware that they have regular events there, so the kids get to support each other. By declining their offer of help, I had walked away from this, and now I regret it. Grove House, and the play therapy they offered to the Menace really helped him, but I am struck by how bureaucratic, and if I am honest, frustrating Grove House services are. They have always been keen to make clear what we are entitled to, which in the Menace’s case was six weeks of play therapy (although to be fair to them, they have made clear that if he needs more he can have it). I got a year’s counselling before Kevin died, I was struggling with feeling responsible for Kevin and also trying to help my dad with my mum, and it was causing Kevin and I to argue. When I had had a year, they told me that was what I was entitled to, so I stopped. They don’t offer any of the day events that St Francis do. In January the Hospice of St Francis are having a pony day, a fun day where the Menace will have a chance to have conversations with children his own age, that he would never have with other kids. We are going, I think it will help him to understand he is not the only one, in this situation. And, if I am honest, I found the chats with the other parents helpful to me. I am also told the cakes are good!

St Francis are lead by the individual, not by rules, you get what you need in terms of counselling and support not just a fixed amount, that is their rule. This is not the first time that I have noticed the difference between the two charities. Kevin was cared for by the Hospice at home nurses at Grove House, I found them slow to pick up on how ill he was and reactive to his needs. They delivered the bed rest he needed the day after he went into St Francis and the wheelchair to help him the day after he died. It was all too slow. It has to be said that he was very proud and did not want to be honest with anyone about how ill he was, but I expect the medical profession to be able to see through that.

Whilst this was a party I dreaded, I really got a lot out of it, and so did he. I am looking forwards to going back now.

Saturday 12 November 2011

Seasonal Spirit

Its been a long time since my last confession.../ blog. We are approaching the time last year when we received the news that there was "nothing more they could do". I remember it well. About this time last year, he came home one day and said, "I'm not driving any more, I can't co-ordinate properly," and just after that he started to struggle with tying laces and using his hands. He went into a hospice, they looked at his pain control (he thought that was the issue), then they found it had gone to his brain. To me the season of merriness was fake. I put on an act, he wanted to enjoy Christmas, it was his favourite time of year, he was a big kid at heart.

So, why the sudden blog? All the Christmas adverts, and the invites that are coming in, remind me of how I felt last year, and strangely, evoke feeling of how I feel this year. Last year was all fake to me. I performed my Christmas duties, loving wife, loving mother, going through my own little psychological hell. I wanted to pull the tablecloth from under all the ceremony and scream "its all fake", but Kevin was determined to enjoy his last Christmas, because he always loved Christmas. Kevin just wanted to get on with it, and wanted to enjoy watching his menace enjoy his favourite time of year. I couldn't talk to the menace about it, he just wanted Christmas to come quicker, and really didn't understand what was happening. In fact I was told (not Kevin) at the beginning of December, when he was in the Peace Hospice in Watford, that he probably had 4 months to live (his oncologist talked to me on the phone, but this was his speculation, he needed to do medical tests to know - he also told me not to tell him, he would, when he knew). We were told officially just before Christmas.


For me, I was just performing a role, I was putting on my front of house persona (Goffman refers to how we portray ourselves to others, but hide the chaos e.g at a dinner party, the kitchen can be in tumoil, but the guests don't see it), internally I was in tatters. I went into my "robot mode", in a crisis I go into "automaton". I needed to be strong for my husband and my menace. So I busily carried on with the christmas shopping and planning. We did all the christmas celebrations, we went to them, and "enjoyed ourselves", it was all very surreal. This blog has been sparked by my annual invite, from my father, to his charity carol concert and cocktails with people I never would get a chance to otherwise (famous people). Kevin used to LOVE it. Last year he came out of the hospice and we went straight up to London to this event. (our good friend Sandra drove us there, and got her ex-husband to pick us up, so we could just concentrate on "enjoying" the evening) He was seriously in pain, but desperate to do it. He tried to walk in, had to leave, then came back. We got to the service, and half way through, he was lying on me, with coats wrapped around him (other people, were even offering their coats) and then we had to leave. We went back to the hotel, he went to bed, I sat on a stool outside the room and phoned my friend who was looking after the menace. She told me he had nits, but she was dealing with it, I felt like an awful mother.

I sat in the hallway of the hotel in my cocktail dress for 2 hours on the phone to my friend. I have never felt so alienated from reality. Dressed in an emerald green dress, with sparkly jewellery, I felt like a a very unqualified, but overdressed nurse, while my husband slept in the room behind me, and I waited for my father and brother and his wife to return from the reception. They returned at nearly 11pm with another couple I didn't know, happy, they had had a good evening, and, to be honest, I was angry. How dare they be having fun???

My father wangled us dinner, they must have hated us, the kitchens were closed, and here were some tipsy revellers and one angry lady! The couple joined us, I was rude to them, I didn't want them there, I was scared and in turmoil, I just wanted to talk to my family, I (very capital I) needed help, not strange people joining us for dinner. We got through the evening, we went home the next morning. Kevin SO wanted to go, and we did it, even if badly. I got my invite this year, spoke to my dad, he talked about the logistics, my sister is going and he told me to talk to her about it (no mention of last year). In the end I did say, I wasn't sure I wanted to go, he acknowledged my feelings. Of course he understood, he, who lives with the burden of sickness and potential death every day, but still manages to "perform" these social rituals that matter so much to him, and to us. I am going again, it is important I face these memories, and prepare myself to carry on as before. At least this year I can acknowledge how I feel, I don't need to keep my "front of house" face for Kevin.


I also have to face the pantomime (Kevin didn't make it last year either) and the annual "do" at a friends, the last thing he made it to, and was on "top form" before he went home and collapsed (took of his party face). I will do them, with friends and family and support, but this year it is "real", not fake, the menace is in on the picture too, we will support each other and get through it. In a strange way I am looking forwards to Christmas, we are spending it with Kevin's family, we can all support each other without him, and make the best of it, learn to enjoy Christmas without him, he was the Christmas obsessive. No doubt the tree won't be up to scratch, and I will have to get up and make the coffee myself before the "grand reveal" (he would wake us all up on Christmas morning - yes, he was awake before the menace), but we will all be aware of what we have, but also what we don't. We are all in on it together.

Wednesday 27 July 2011

Not waving, but drowning

It is the first week of the school holidays, it is nearly 1am and I should go to bed, as my friend's children will be here at 8am in the morning. I am looking after them for the week. She, like me, doesn't want them in childcare all summer and I wanted to help out. My grand plan was to look after the kids during the day and work in the evenings, up until today it went okay, if a little fraught!

The Menace has been having play therapy, he went today and I sat around with the other two waiting for him. He needed today, I needed him to have it. Yesterday we had what I had been waiting for...

For the last three days I have looked after three of them, lets call them, the Menace, Lauren and Edward. Lauren in the Menace'sbest friend and Edward is here 5 year old brother. I have taken them to the park every morning, to walk the dog, and the Menace has finally learnt to ride his bike. I have also taken them swimming in our local school pool (which I have paid a subscription to over the summer) and we have watched DVD's and had picnic. To be honest I am exhausted and its only the middle of the week - I have then, after that worked all evening!

The Menace has always felt a bit short changed that he hasn't got brothers and sisters. We live in an area where everyone seems to have loads of children! It has been a bit of an eye opener to him, as he has had to compete for attention and not always got his own way! Little things like I can't just swim to him in the deep end, becuase Edward is too young...

Yesterday we had the moment I have been waiting for. They were all tired, and I was preparing tea. I heard them all shouting in the garden, so I went out. Dennis was being bossy and Lauren wasn't happy, as far as I could tell Dennis was in the wrong. I told him so, he burst into tears "I want Daddy..!" My response (as calmly as I could) "Of course you do, but it doesn't change anything, you still need to let Lauren have her turn", then he said the words I have dreaded, in a really babyish voice "Daddy lovely, Mummy horrid!!". I didn't get angry or react, just took him to the kitchen to calm him down and allow him to go back to his friends, but it hurt...

I know that his dad will be immortalised in his mind as lovely, remembered for all the good things and I will gain the reputation for being the disciplinarian, its just how it has to be. I remember telling Kevin this before he died, "you'll always be loved, it will be me who gets the reputation for being a cow!" I didn't expect it quite so early. Perhaps I shouldn't have, but I waited until bedtime and I told him "Its hurts when you say things like that." His response was that Mummies should be nice to their sons. I put him straight, "My job is to teach you right from wrong, Daddy would have told you off too." He will never say sorry (just like his dad), but he did tell me he loved me.

Today I factored in more down time for them all, but by the end of the day they were still getting fractious and I was getting ready for the Mum to pick them up. Just before she did, another curve ball hit, my father phoned:

"Your Mum is in trouble, she has had another bad stroke."