Saturday, March 27, 2010
A few weeks ago, I booked for Hope, Ellie, William and I to go on our first ever holiday together - the first time we've been ever to get away in six years. Thomas the Tank Engine is coming to Butlins and I know a little boy who adores Thomas and friends! I thought Butlins would be an easy holiday for the first with all the medicines and feed and, as I don't drive, we could get there easily by train and then have all we need on site. With everything booked for Easter Monday until the following Friday, I was devastated to hear yesterday that there would be a national rail strike that week. We'd be able to get there OK but the strike could prevent us returning home. I spent ages on the phone working out alternatives and came up with a contingency plan to stay an extra night if necessary. It would add to the cost but no 'spring of discontent' was going to ruin this special holiday!
Before William's transplant I would never have dared book anything any further than a day away. Every time we ever planned anything, he always ended up in hospital and we learned it was better not to set ourselves up for the disappointment. William is doing really well after transplant. The only thing that is causing slight concern is that the bowel that comes through his tummy to form his illeostomy has been prolapsed for quite some time now and has a few sores where the delicate internal tissue rubs on his clothes. [For any new readers, William's colon was removed at the time of his transplant but wasn't replaced. You can cope fine without a colon with the end of the small bowel being bought out through the skin to form an illeosomy] When we were at transplant clinic last week, we discussed the prolapse and our consultant said he felt it was time we thought about fixing it. He asked me to send a photo for him to discuss with the surgeon and then come back to me with a plan. I was surprised this morning to get an admission letter for William to go to Birmingham on 5th April for surgery. The day we were meant to be going to Butlins!
My initial reaction was to call the team on Monday and ask for this admission to be postponed. Then I thought about it a bit more. Being on my own, I can't cope with these admissions without Mum and Dad being fantastic and looking after the girls and they are away for 3 weeks from the end of April. Ellie has her SATS in May and then will begin her preparation for secondary school. It would be awful for her to be away then and miss meetings and visits to the new school. The girls are looking forward to a week with Grandma and Granddad and they're off to their Dad's for the second week of the holidays. If it wasn't for the fact we'd booked our holiday, this admission is actually perfect timing. Thankfully, a quick call and our holiday was rebooked for the first week in August. Thomas won't be there but I think it will be better for William overall as his plaster casts will be off so he can go in the pool and play on the beach.
With the holiday sorted, I'm now planning how I'll juggle work. I have lots of fantastic stories that need working into pitches so I'll get as much as I can worked up and pitched to editors this week. Hopefully, some will be commissioned and I'll be able to do the interviews, write them up and write features while we're away. The 3G reception is pretty ropey at the hospital so I'll have to negotiated an hour or so away from Wills to find an internet cafe if I need file any copy to meet a deadline. A couple of new DVDs will help me win a few hours. For the most of the week, I'll concentrate on my novel. I think one big push during the evenings while Wills is asleep and I'll have the first full draft finished. I can also research some more agents and work out a strategy towards getting a publishing deal by the end of the year. There are two main reasons why I'm a freelance writer. I am passionate about writing and telling stories and the flexibility of freelancing is essential to my life. My work can be worked around William being home if he's unwell, hospital appointments and admissions. I'm lucky this time to have a week to manage the work I have on so I cam make it easier to take with me to the hospital and assess what can be realistically done from there, what needs to be done before we go and what I can leave for when we get back.
I'm pretty confident I can juggle everything and not get behind during the week to ten day stay they've predicted. The girls will be fine for that long, and would have been away for half of the time anyway. I just hope William's bowel settles quickly after the operation so it doesn't drag on. At least our new holiday is several months away so we should all be back on track by then.
Thursday, March 25, 2010
Being a freelance writer can, at times, be a bit lonely. Most of my time is spent tapping away on my laptop at my desk at home. It's great that most of my writing is about other people because I get to talk to interesting people most days but there are days when it's just me and the keyboard. I very much welcome days that take me out and about, meeting people so was very much looking forward to yesterday. With a couple of coffee meetings during the day and a social gathering of fellow freelance journalists from the Journobiz forum in the evening, I spent most of the day going backwards and forwards in and out of London. I knew it would be hectic but it turned out to be a bit more eventful than I'd bargained for.
Over Christmas, the UK security alert status was set to severe, meaning we are, apparently, very likely to experience a terrorist attack at the moment. We were given that information, not to ruin our Christmas and fill us with a sense of fear that 2010 will see another 7/7, but to let us know that we all need to have our wits about us. A 'severe' threat level tells us to be on the look out for anything suspicious and unusual and be ready to respond quickly. Transport hubs and stations are always high up on the list of potential terrorist targets. After 7/7, a lone suitcase made us feel uneasy at the very least. Now, I'm not even sure I would notice. We so quickly become complacent. So much so, it would seem, that even when sat in Starbucks outside Victoria Station, witnessing police rushing around evacuating and blockading an area surrounding a bus, I was more interested in knowing what was going on than getting the heck away. Even in these times of high threat, my curiosity far outweighed any fear. Even when two police officers came in and told us that there was an incident involving a marksman on a bus just opposite us, people were keen to carefully gather their belongings and put coats on before legging it. We've become so close to false alarms that my thoughts were that someone was about to become very embarrassed to find their lost rucksack at the centre of such a circus. It wasn't until I got home that a good old google search revealed that a few feet and a panel of glass was separating me from a man wielding a gun! Thankfully, the police were quick to get the situation under control but it could have been a lot worse. I have to admit, the fact we are on a state of alert suggesting a terrorist attack is likely completely slipped my mind, even though I was in the middle of what could have been that very event unfolding.
The threat of terrorism isn't all we Londoners have to think about as we go about our daily business. Another we are constantly being warned about is pickpockets and bag snatchers. I like to think I'm pretty careful on this one. I hold my bag close to me on public transport and am paranoid about my iPhone - I constantly check it and keep my hand on it when I have people crushed against me on the tube. Yep, I'm vigilant about this one...until I'm deep in a heart to heart over a glass of wine. I was having a lovely evening, meeting up with fellow writers I've met on the Journobiz forum. One of the things I find so amazing about this group of people is how much we encourage and help each other, sharing contacts and helping each other with case studies. Freelance journalism can be a lonely game and it's fantastic to find colleagues and friends among others sitting at home bashing out words on the keyboard. Someone had just shared a useful contact with me and I was keen to scribble it down straight away. I was sitting at the end of the table and my bag was right by my feet. Or was! How on earth someone managed to sneak up to our table and steal my bag without any of us noticing I don't know! We searched and searched but it was gone, together with my cash, card and ticket home. My overwhelming feeling was one of total embarrassment with having to rely on people I'd only just met bailing me out so I could get home. They were fantastic and, of course, I'd have done the same. I lost £30. Not much in the grand scheme of things but that's a lot of Primark clothes and Lush goodies to my two girls and would have got William 5 of his treasured Thomas engines. Worse is the fact that someone took my stuff. The bag I chose for myself, my diary, a magazine, a notebook (empty thank goodness) and a pen. Worthless to them and, no doubt, slung in an ally in Richmond somewhere by now, but my personal things. For once, William's situation and my need to be within easy reach of his carer, saved the day. The thief didn't get the main prize - my iPhone was safely on the table!
I felt really bare going home with no bag at all and had a bit of time to feel that way too. London had one more thing to throw at me. All trains from Victoria to East Croydon were delayed...because of a trespasser on the tracks in Brighton!
Thursday, March 11, 2010
This Monday saw the 100th year of International Women's Day. All over the world, women got together to form an alliance of support for those facing challenges. Many organisations led events focusing on their own issues, issues including freedom, justice and health. Us women really can make a huge difference when we get together to make a point - just look at the huge political interest in Mumsnet in the run up to the election. My previous blog about the amazing women campaigning for bone marrow donors is another example.
I spent Monday being a busy journalist and so missed the opportunity to join other women on bridges over The Thames, to show my support for those whose lives are affected by war. As this was going on, I was busy interviewing the inspirational Jonnie from the Haiti Hospital Appeal . This was the only time he was free but it was perfect timing, given that their amazing work was inspired by the 75% of Haitian women who give birth alone in a country where seeking health care is "impossible."
In support of Jonnie, all at the Appeal and those women whose lives they are dedicated to change, I decided to play my part for International Women's Day in joining the White Ribbon Alliance at their 'Global Dinner Party.' All across their 140 member countries, women joined together for fun, food and fellowship and to think of those the Alliance reaches out to help. Every minute, somewhere in the world a woman dies in childbirth, 99% of these women are in third world countries. These are the women we were thinking about throughout our evening. Every single woman who came to the party has their own incredible story. I didn't set out for that to be the case, it simply reflects the circles I move in since I had William. For many of our peers, we are women who have been through unimaginable challenges but we all came together to share an evening thinking about those who needed the health care and support we had, or our children had, in order to be alive today but just happened to have been born in a country where that level of care just doesn't exist. We may have been through our own difficulties but we are the lucky ones!
With William living in and out (mostly in) hospital up until coming home from his transplant a year ago, I haven't organised anything like this for about four years! He's been home for the last year but it has take a while for us all to resettle and allow ourselves to take it step by step back into life again. I just hadn't really thought of inviting a group of friends round. I guess I was so far out of that mind set so I'm really grateful that this inspired me to just do it. I will be doing it again very soon! Because it was been such a while, it wasn't until 3 hours before the party, just as our local shops were about to shut, that I realised I didn't have enough bowls and glasses. I am now fully stocked for eight dinner guests so there has to be a next time.
We enjoyed our food and a good natter. Only two guests had met each other before. In fact, not only met each other, but one gave her friend an incredible gift - one of her kidneys! We chatted about that for a while and went onto debate the ongoing question as to whether we should have an opt in or opt out system of organ donation. Another of my guests donated her Mum's organs when she died so, between us, we had a lot of thoughts, feelings and experiences to share on this.
While organ donation was a big issue that every woman in the room has experienced, we were keen that the evening didn't become dominated by it. We are all grateful for the second chance we, our family members or friends were given, or gave, through organ donation but the night was for thinking about those who don't even get a first chance at life.
After a yummy dinner of Chilli, Sue's lovely milk jelly (that was a staple dinner party treat in my childhood reminded me of my Mum and Grandma - very appropriate), coffee and some of the really gorgeous mini cup cakes from my favourite Love Bakery, we sat down to watch a video. I wanted to focus our party on the work being done by the Haiti Hospital Appeal. There are lots of videos on their website and You Tube showing what they are doing now with the children in their respite centre, their clinics and their work with the earthquake injured. I wanted to go right back to the beginning, in 2006, to when two amazing 21 year olds arrived at Haiti and saw first hand what healthcare is like there. The video we watched is here We watched in silence, amazed at what we were seeing - not only the level of deprivation, the grief for Julia and her family, but also the inspirational response shown by two young men. I will come back to the Haiti Hospital Appeal again soon to talk more about these amazing guys.
We could have sat and watched all the videos the Appeal have on You Tube and I'm sure will be doing over the coming days. I hope you will too. If you do, please go here afterwards and do your bit to help them.
The Haiti Hospital Appeal are a partner of the White Ribbon Alliance, and having watched such a moving piece of film, we decided we wanted to do something to support them. We decided to do a 'fashion swap" - exchanging bits and pieces we no longer wear and paying £1 for each item we took. It took us a while after the film to want to do anything other than just sit, think and talk about what we'd seen but, when we did, we had a lot of fun looking at each other's bits and bobs and picking out what took our fancy.
International Women's Day is over but we don't have to stop thinking about women all over the world who live, work and bring their families up in the face of challenges we could never really imagine. Three women who wanted to be with us, but couldn't are women who are bringing up children with very complex and life threatening conditions and another for whom, every day she wakes and breathes, she's defying all medical expectation. We all face huge challenges to get through the day but we know we have a home, food, heating, clothes and health care to enable us to get there. There is always space in our lives to remember and do something, no matter small, to help those who face the same challenges as we do but without all the things we have in the UK, the things we hardly even notice sometimes because we take them so much for granted.
Tuesday, March 02, 2010
Imogin, aged 7
I have so many things I want to blog about, so much is happening in life right now and there is lots to muse over.
I'm sitting up tonight, waiting for the right time to switch off William's feed and swap if for water, and then to switch off the water. It's going to be a long night and a very early start, leaving at 6 to get to hospital for 7 so he can have a minor operation on his feet. The procedure is minor but poor Wills has been through so much in his life so far and is terrified of 'special sleeps'. He hates the way the gas makes him feel and the sore throat he always wakes up with.
Our children are so brave. I have met a lot of children and families in hospital over the last 5 years. A few years ago we met Imogin and her Mum, Sheila. Imogin had just been diagnosed with Leukaemia and Sheila was in a state of shock and disbelief. We bumped into Sheila and Imogin from time to time when both children were in our local hospital and at a christmas party at out local hospital. I hadn't seen them for a while, but often wondered how Imogin got on. I assumed she'd have been treated and was well again. Over the last 6 months they started appearing in our local paper, appealing for bone marrow donors and then, in January, Sheila was in the paper breaking the heartbreaking news that Imogin had passed away. She was 7. I was planning to write to Sheila via the hospital.
On Saturday, I had arranged to meet with the lovely L for coffee. Shortly before leaving, I read on twitter that there was a street theatre team out in Croydon. Only 1% of those on the organ donor register are from Southern Asia, meaning many have to wait twice as long as white people for a transplant that depends on tissue match, such as kidneys. There is a vibrant campaign on at the moment to address this, using street plays and faith road shows to promote organ donation among the Asian community. You can read more about the campaign, and find out if it's coming near you here . I suggested L and I met to watch the play. It was really entertaining and effective in addressing the myths about organ donation. I think real life stories are incredibly powerful but will be looking to incorporate some of the ideas in talks I plan to do. It was really refreshing to see a different approach to things I've seen and taken part in so far.
L was surprised where the event was taking place as she had heard it was somewhere else in the shopping centre. As we wandered around, we found out why. At the other end was the event she had been told about, a pop up shop raising awareness and registering people to donate bone marrow and enabling people to give blood on the spot. It was being run by aclt, a charity highlighting the lack of bone marrow donors in the Afro-Carribean community. L and I went along and there I saw a familiar face - Sheila was out, just 10 days after burying her daughter, to raise awareness of the lack of bone marrow donors and encourage people to sign up to save the lives of other children. It was lovely to be able to give her a hug and share some memories. She is so strong, a truly amazing and inspirational woman!! She is determined to raise awareness of the fact that children from the Black community have a 1 in 250 000 chance of getting a match from a registered donor should they need a bone marrow transplant. White children have a 1 in 5 chance! What a huge disparity! I promised to do what I can to help them in their campaign.
L and I came away feeling incredibly refreshed and energised from what I'd seen both sets of campaigners do. We are still talking about Sheila and the other amazing people we met in just a couple of short hours.
Now, as I'm preparing myself for another day of procedures with Wills, thinking about how brave he and I will need to be again, I am drawn to a poem Imogin wrote just a month before she died. This, and the image of Imogin above, comes from the aclt website here and the words are written in exactly the same way as Imogin wrote them.