Results from more scans, CT and bone but it's all just blah blah blah. Maria has rallied and is in the mood for heroics - she wants more chemo, the whole nine yards - the original protocol from A-Z all over again, a humeral prosthesis, nine months of treatment and six more cycles of chemo. We are askance. She's just doing her job but she misjudges it badly and she is nowhere near where we are. The meeting goes badly and we part with no course of action decided on. Rose is at school on a trip to the park and I am meant to be with her not planning her slow motion car crash. That night Maria gets Tim Briggs to call me and have another attempt at pushing chemo. We agree to meet later in the week to talk it through again without Rose.
It is both children's last week at school before the summer break that they are both so excited about. They both think we are cramming eight weeks with fun and trips - the Isle of Wight, Corfu with the cousins and we go through all the motions of Founders Day, cricket matches, induction afternoons with new teachers that one of them will never be taught by, packing up and proudly bringing home their year's work. Rose's school pulls off a new low by requesting that the children fill a memory box to be opened on the last day of next year with photos, letters to themselves and precious things. Jesus. You literally couldn't make this up.
Friday 25th June
Rose has a bone scan booked at Kings - we tell her it's just to check out the sore shoulder and that she can go to Felix's sports day while the radioactive medicine does its stuff between scans. She takes it all so in her stride - she cannot remember now life before anaesthetising cream, canulas in her veins, endless different radiographers facilitating endless different scans. She is eight and so they start to tell her exactly what is going to happen - it's ok she says. I know.
The bone scan holds no fears but she is in pain and I can't bear it. I bleep her consultant and get her written up for stronger drugs but down in the hospital pharmacy they make a mistake and give codeine in tablet form not liquid. It's no one's fault but I shout at the poor pharmacist and Rose is a bit surprised.
We go to Dulwich College where 200 lovely 12 year old boys are running around and jumping over things on a very hot day - they all look so well and healthy and fabulous and they've all got all their lives in front of them. We look out for our very own fabulous 12 year old and I have to forcibly stop myself from throwing myself on top of him for a hug. A couple of people know Rose is coming and going from the hospital but I don't want to talk about it. I just want to be with my friends for an hour watching my son like every other mother there. If I stay there on my corner of an English playing field on a beautiful June day perhaps it will all just go away.
The bone scan holds no fears but she is in pain and I can't bear it. I bleep her consultant and get her written up for stronger drugs but down in the hospital pharmacy they make a mistake and give codeine in tablet form not liquid. It's no one's fault but I shout at the poor pharmacist and Rose is a bit surprised.
We go to Dulwich College where 200 lovely 12 year old boys are running around and jumping over things on a very hot day - they all look so well and healthy and fabulous and they've all got all their lives in front of them. We look out for our very own fabulous 12 year old and I have to forcibly stop myself from throwing myself on top of him for a hug. A couple of people know Rose is coming and going from the hospital but I don't want to talk about it. I just want to be with my friends for an hour watching my son like every other mother there. If I stay there on my corner of an English playing field on a beautiful June day perhaps it will all just go away.
Wednesday 23rd June
The year breaks down for us all into a lot of memorable dates and along with the old favourites like Christmas and our birthdays and the day the dog ate the hamster there are several significant dates for Simon and I and Felix and Rose - anniversaries we will never be able to walk away from. 21st March when we walked into Kings and came out two hours later completely different people with a daughter with cancer, 7th April when to the sound of her endless screaming she shattered her cancerous leg, 6th November eighteen months later when metastatic lung tumours were found and we knew we hadn't made it into the lucky 50 per cent, and now today 23rd June when finally the game is up. The radiographer at Kings was wrong. Rose's incurable cancer is back in her shoulder and also in her lungs.
There really isn't an awful lot to say - Maria says sorry several times and I tell her it's ok. I don't think she's sure if I've had a lobotomy or am just really well brought up.
There really isn't an awful lot to say - Maria says sorry several times and I tell her it's ok. I don't think she's sure if I've had a lobotomy or am just really well brought up.
Thursday 17th June
Simon and I have a day of synchronised anxiety and realise independently that we need to do something about the shoulder pain today. Simon phones Stanmore (for reassurance) and they tell him to take her straight to A&E at Kings for a plain film x-ray and to get it couriered up to Stanmore that night. Not that reassuring then.
We do it straightaway and the radiographer confidently reports that he can't see anything wrong with her shoulder or arm. Her consultant at Kings sees her immediately, gives her a full examination and says she's looking just fine. We are so relieved that I am almost cross with Rose for putting us through so much worry for nothing. It's just a sore shoulder.
We do it straightaway and the radiographer confidently reports that he can't see anything wrong with her shoulder or arm. Her consultant at Kings sees her immediately, gives her a full examination and says she's looking just fine. We are so relieved that I am almost cross with Rose for putting us through so much worry for nothing. It's just a sore shoulder.
Sunday 13th June
Rose has shoulder pain. It won't go away with paracetomol and it is waking her up at night.
Wednesday 5th May
The x-ray is clear. No recurrence. We look at one another - is there a chance that that will be the end of it? Ten per cent of metastatic osteosarcoma patients make it past the five year mark. Someone has to make up that ten per cent. It's going to be Rose.
In a sudden rush (rare) of optimism and conviction I decide that Rose is going to be ok. She's going to be nine and ten and eleven and twelve and then she's going to drive me mad because she's a teenager and we're going to argue and fight over clothes and boyfriends and staying out late and we're going to shop together for another thirty years and I can't wait for all of it.
In a sudden rush (rare) of optimism and conviction I decide that Rose is going to be ok. She's going to be nine and ten and eleven and twelve and then she's going to drive me mad because she's a teenager and we're going to argue and fight over clothes and boyfriends and staying out late and we're going to shop together for another thirty years and I can't wait for all of it.
Wednesday 28th April
Back to UCLH. Back to Maria our oncologist of old for review now. Back to where it all began. It is strangely reassuring to see her and she is delightful with Rose. We've had the most intense encounters of our lives with this woman. She's never seen Rose upright as she had already broken her femur by the time we met and was in traction on chemo and morphine. Oh how we reminisce. She tells her that she is walking like a supermodel and Rose immediately recognises that here is someone who speaks her language.
The play specialist takes Rose off and teaches her how to knit in the newly gorgeous brand new outpatients clinic while we catch up with Maria and review the last two years since we last saw one another. It's all fine until she asks us to go and get a chest x-ray and then I want to throw up. I wasn't prepared for that and even worse she will write to us with the results. It's still only ten weeks since surgery - it must be fine.
We get it done quickly and take Rose out for lunch. The restaurant is full of people just on their lunch hour, getting on with their day, doing their thing. No one else has come from a paediatric cancer unit. I look around and wonder how many of them have eight year olds who are tearing around their school playgrounds in the spring sunshine. Lucky, lucky bastards.
The play specialist takes Rose off and teaches her how to knit in the newly gorgeous brand new outpatients clinic while we catch up with Maria and review the last two years since we last saw one another. It's all fine until she asks us to go and get a chest x-ray and then I want to throw up. I wasn't prepared for that and even worse she will write to us with the results. It's still only ten weeks since surgery - it must be fine.
We get it done quickly and take Rose out for lunch. The restaurant is full of people just on their lunch hour, getting on with their day, doing their thing. No one else has come from a paediatric cancer unit. I look around and wonder how many of them have eight year olds who are tearing around their school playgrounds in the spring sunshine. Lucky, lucky bastards.
Monday 9th April
We've been on holiday! Rose has been back on a plane, in a pool, on a beach, in a restaurant by the sea with lots and lots of people who love her. It was fabulous. It was painful. Was it the last time?
Monday 15th March
We decided to give school a wide berth until today when Rose was seeing Simon Jordan for her first post op check. Almost sure it was too soon (surely?) for anything sinister to have reappeared in her lungs we still both nearly died of fright waiting for the chest x-ray to be analysed. All is fine - Rose is 'fabulous', her chest is 'looking amazing' (professional modesty) and he sent her confidently back to school to get on with being eight. Now that he has told her she is fabulous and amazing her lungs aren't feeling swollen any more.
So we're just going to get on with our lives then.
So we're just going to get on with our lives then.
Monday 8th March
Psychological set back - Rose is fed up. Hardly surprising - she's got a bit of chest pain, her leg aches, she's short on one side now by 1cm and it's making her limp worse, small 8 year old girls are not the most sensitive or imaginative and cannot begin to go where she has been and she's thoroughly fed up with the whole world.
She rings me from school - via the school nurse - to tell me that her 'lungs are swollen'. Bless her little heart. It is about the most heartbreaking thing she's ever said to me and I break land speed records getting to her and putting her safely back on the sofa with the dog, popcorn and Disney channel. School can wait.
She rings me from school - via the school nurse - to tell me that her 'lungs are swollen'. Bless her little heart. It is about the most heartbreaking thing she's ever said to me and I break land speed records getting to her and putting her safely back on the sofa with the dog, popcorn and Disney channel. School can wait.
Monday 1st March
Bored of all our DVDs and having already cost a fortune in pottery painting, cinema going, pizza lunches and torturing the dog we decided that check up or not Rose is going back to school. We'll start with half days and see how we get on.
Wednesday 17th February
We're home!
Almost had to take her back last night as Rose totally panicked once alone with me, Simon and a suitcase full of painkillers. She watched us incompetently drawing up vials of medicine, chopping tablets and reading instruction leaflets convinced that she was in the hands of total amateurs (chance would be a fine thing) and wouldn't make it through the night. Delayed shock, fear and relief came out in a hideous three hour bout of total hysteria and just as we were about to admit defeat and put her back in the car to the Brompton she fell asleep - completely worn out. Tomorrow is another day.
Almost had to take her back last night as Rose totally panicked once alone with me, Simon and a suitcase full of painkillers. She watched us incompetently drawing up vials of medicine, chopping tablets and reading instruction leaflets convinced that she was in the hands of total amateurs (chance would be a fine thing) and wouldn't make it through the night. Delayed shock, fear and relief came out in a hideous three hour bout of total hysteria and just as we were about to admit defeat and put her back in the car to the Brompton she fell asleep - completely worn out. Tomorrow is another day.
Tuesday 16th February
Simon Jordan comes to the ward on his rounds and Rose is jumping up and down on a mini trampoline in the middle of the room. Five days after open chest surgery.
'Does that hurt, Rose?'
'Nope'
'Would you like to go home?'
Hooray.
'Does that hurt, Rose?'
'Nope'
'Would you like to go home?'
Hooray.
Saturday 13th February
Oh god ward life how could I have forgotten so quickly? Low points so far:
The Nazi serving supper in the playroom tells Rose (who has tottered out of bed for the first time in three days) that we didn't order anything so she can't have anything. Cheers for that.
The baby next to us is having his breathing monitored overnight and his machine alarms every five minutes all night. Not his fault, not his mother's fault but OH MY GOD.
The mother on the end (I need a whole separate blog just for her but no time) shouts 'do you want a fucking slap?' at her two year old in the night because he needs a wee.
Only parents are allowed by the bed (no bloody room for anyone else) and Simon is busy somewhere with Felix and 100 of his friends distracting him from Rose.
Every delicious food outlet in London is within a five minute sprint and I can't get to any of them because Rose has me on a leash about as long as her epidural tube. I am eating canteen sandwiches for breakfast, lunch and supper.
Aaaggghhh.......I want to go home.
The Nazi serving supper in the playroom tells Rose (who has tottered out of bed for the first time in three days) that we didn't order anything so she can't have anything. Cheers for that.
The baby next to us is having his breathing monitored overnight and his machine alarms every five minutes all night. Not his fault, not his mother's fault but OH MY GOD.
The mother on the end (I need a whole separate blog just for her but no time) shouts 'do you want a fucking slap?' at her two year old in the night because he needs a wee.
Only parents are allowed by the bed (no bloody room for anyone else) and Simon is busy somewhere with Felix and 100 of his friends distracting him from Rose.
Every delicious food outlet in London is within a five minute sprint and I can't get to any of them because Rose has me on a leash about as long as her epidural tube. I am eating canteen sandwiches for breakfast, lunch and supper.
Aaaggghhh.......I want to go home.
Thursday 11th February
Take two.
Simon Jordan is fit and well and has just spent five hours operating on Rose. He has removed two tumours, found no others and she is in intensive care beginning her recovery.
I started the day sobbing uncontrollably over her anaesthetised body in theatre and am now elated and euphoric. Simon and I spent the morning drinking coffee endlessly and watching the hours tick by. Again. When the surgeon calls us from theatre to say it's all over and went well we have to remind ourselves that it's not really over at all. On our cramped ward a mother asks us casually what Rose is having done and we stare blankly at her. Everyone else is having an ingrowing toenail removed.
But it's over - almost four months from the beginning of this new hell and Rose's tumours are out, she is drifting in a morphine world cuddling Snuffles and we have a new surgical god.
Simon Jordan is fit and well and has just spent five hours operating on Rose. He has removed two tumours, found no others and she is in intensive care beginning her recovery.
I started the day sobbing uncontrollably over her anaesthetised body in theatre and am now elated and euphoric. Simon and I spent the morning drinking coffee endlessly and watching the hours tick by. Again. When the surgeon calls us from theatre to say it's all over and went well we have to remind ourselves that it's not really over at all. On our cramped ward a mother asks us casually what Rose is having done and we stare blankly at her. Everyone else is having an ingrowing toenail removed.
But it's over - almost four months from the beginning of this new hell and Rose's tumours are out, she is drifting in a morphine world cuddling Snuffles and we have a new surgical god.
Wednesday 3rd February
Rose and I went into the Brompton yesterday for a pre-op day of scans, bloods, x-rays, consents and not much in the way of light relief in readiness for a 7am theatre list this morning. Initial impressions put the Brompton almost at the top of our extensive hospital critique - location (amazing, Kings Rd) nurses (good), accommodation (fab - single room), playroom (adequate, dvd supply good, games not good), queue for x-ray (non-existent - excellent), food (crap but McDonalds round the corner) etc etc. Simon Jordan (drum roll) even came to see us and promised her a post-op McDonalds bought personally when she was up to it. We eased ourselves into readiness and had an OK night.
Until - 7am visit from his registrar just as Rose is in her theatre gown with a drip in her arm to announce that Simon Jordan is ill and we can go home whenever we are ready. The tumours are coming home with us. It's no one's fault - but it's miserable. I take Rose home via the toy shop where we buy the Sylvanian hospital and spend the rest of the day performing successful thoracotomies on a variety of Sylvanian animals. Simon comes home and we drink a lot of wine and scream into our pillows.
Until - 7am visit from his registrar just as Rose is in her theatre gown with a drip in her arm to announce that Simon Jordan is ill and we can go home whenever we are ready. The tumours are coming home with us. It's no one's fault - but it's miserable. I take Rose home via the toy shop where we buy the Sylvanian hospital and spend the rest of the day performing successful thoracotomies on a variety of Sylvanian animals. Simon comes home and we drink a lot of wine and scream into our pillows.
Sunday 24th January
Just two more birthdays to crawl through before we could talk to the children. Felix was 12 on Thursday and Simon was a little bit older the following day. The Oscar winning performances of normality and birthday cheer are getting a little tired now and we are not in great shape by the time we sit the children down and tell them in the lightest, brightest and most casual of terms that Rose has to have a bit more treatment. Despite the up beat delivery and complete omission of facts and implications both children are shocked and frightened and Rose cries for hours. So we promise her a hamster.
Friday 15th January
Developments - finally.
Since the scan is now booked for a Friday we can't get out of seeing Kathy, Rose's oncologist, in her clinic much as we would love to. We have the scan first and Rose is then whisked off as always by clowns and play specialists to do something fabulous. If only the Marsden were run by the clowns. We wait and wait and wait to see Kathy. Finally we are in and can tell that Kathy herself can't decide entirely whether the news is good or bad - the tumours have doubled in size (bad) but there are no more as yet (good). Kathy gets hold of the thoracic surgeon there and then on his mobile and on the basis of her verbal report he decides yes, let's get the bastards out of my little girl's chest. Or a variation of that anyway.
With that decision made Kathy then goes on to drop a more unexpected bombshell. She is leaving the Marsden and moving to a more managerial role at Great Ormond Street. I am entirely wrong-footed - in the bad marriage of our relationship with Kathy I do not expect her to slip out of the back door like this just as things take a turn for the really quite appalling. Presumably it's back to UCLH although who knows how relevant follow-up appointments now are for us. Each knowing we won't ever have to do this again we have the most amiable and sensible chat we have had in nearly two years and wish each other well. Game, set and match to Kathy.
The more pressing issue is that Simon Jordan, our new great white hope, wants to meet Rose. The game with the children is up.
Since the scan is now booked for a Friday we can't get out of seeing Kathy, Rose's oncologist, in her clinic much as we would love to. We have the scan first and Rose is then whisked off as always by clowns and play specialists to do something fabulous. If only the Marsden were run by the clowns. We wait and wait and wait to see Kathy. Finally we are in and can tell that Kathy herself can't decide entirely whether the news is good or bad - the tumours have doubled in size (bad) but there are no more as yet (good). Kathy gets hold of the thoracic surgeon there and then on his mobile and on the basis of her verbal report he decides yes, let's get the bastards out of my little girl's chest. Or a variation of that anyway.
With that decision made Kathy then goes on to drop a more unexpected bombshell. She is leaving the Marsden and moving to a more managerial role at Great Ormond Street. I am entirely wrong-footed - in the bad marriage of our relationship with Kathy I do not expect her to slip out of the back door like this just as things take a turn for the really quite appalling. Presumably it's back to UCLH although who knows how relevant follow-up appointments now are for us. Each knowing we won't ever have to do this again we have the most amiable and sensible chat we have had in nearly two years and wish each other well. Game, set and match to Kathy.
The more pressing issue is that Simon Jordan, our new great white hope, wants to meet Rose. The game with the children is up.
Wednesday 13th January
I am going to get Say No To Snow T shirts printed - today is the day we have waited over three months for. The repeat CT of Rose's chest to assess tumour growth at the Marsden in Sutton. It has snowed hard all night and Dulwich is a white-out. I phone the Marsden - so far they have one radiographer in and the access road is closed. The bored receptionist in CT gives me an appointment for Friday.
Even the children are now fed up with the snow.
Even the children are now fed up with the snow.
Saturday 9th January
Rose's 8th (last?) birthday party. I have been dreading this. And it's STILL snowing. I have ordered a ridiculously expensive and completely amazing cake which Rose and I trudge off in the snow to collect on foot while Simon blows up balloons - the whole morning is a nightmare in slow motion and Simon and I can't even look at each other.
But actually of course the party is wonderful and fabulous and a ton of fun - the house is full of gorgeous little girls being pampered and belting out songs out of tune to a karaoke machine and they are all hilarious and full of LIFE. Rose is in birthday girl heaven and the whole living in the moment thing really works. What a great afternoon. I want it to never ever end.
But actually of course the party is wonderful and fabulous and a ton of fun - the house is full of gorgeous little girls being pampered and belting out songs out of tune to a karaoke machine and they are all hilarious and full of LIFE. Rose is in birthday girl heaven and the whole living in the moment thing really works. What a great afternoon. I want it to never ever end.
Thursday 7th January
Aaagghh bloody bloody snow. Can't get Rose to Bolsover St for her leg scan this afternoon no trains, roads a nightmare. Postponed until next week. Thoracic surgeon needs leg scan to confirm no metastases anywhere else before he operates, if he operates. Children back to school, real life back in very sharp focus.
Monday 28th December
So snow sucks. My god the country has come to a standstill with not a patch of the UK not currently under blankets of the stuff - and it appears we are not a nation of wannabe Inuits. Taking Rose to a birthday party less than five miles from home last week I had to abandon the car - and that's in London. More forecast - children in heaven.
Christmas was wonderful and endlessly precious. Still living in a bubble and dreading the new year.
Christmas was wonderful and endlessly precious. Still living in a bubble and dreading the new year.
Tuesday 22nd December
What to say - so many days of denial but a gradual processing of the shock and grateful most of the time for the privacy of it all. We've met Simon Jordan - thoracic surgeon and latest caped crusader in our lives. I fear mainly for the renewed hope he put in our hearts as I know there is a world of difference between what he would like to do for Rose and what he really can. He makes it all sound very simple and very possible. There is talk of osteosarcoma 'burning itself out' (I love this phrase) and Rose recovering quickly from open chest surgery. The decision to operate or not is his and will depend on the results of the next CT scan in January to see whether the lung tumours have grown in size or number or both. But we could ask him all the questions we couldn't ask in front of Rose and went through the details of the operation. Simon Jordan takes his place in my hall of fame next to Tim Briggs - I am in love with them both.
Heads down for Christmas now - the house is full of food, champagne and presents. There is so much booked and arranged to keep us all busy and distracted for the next few days and the children are so excited. It's even snowing!
Heads down for Christmas now - the house is full of food, champagne and presents. There is so much booked and arranged to keep us all busy and distracted for the next few days and the children are so excited. It's even snowing!
Friday 11th December
Feeling very isolated with the loneliness of what is happening to us and the secrecy of it - if the children were smaller, or perhaps older, we would not have to protect them from the bush telegraph like this. But I suppose more than that we're protecting them from the truth for every second that they don't need to know it. I re-read today the email traffic from around the first summer of Rose's treatment and I get comfort again from the support of friends and family that we had then and can't have just now - I know it's out there and when we need it it will all be there again.
In the autumn we were referred to the Family Therapy unit at the Maudsley by our GP for the children to talk about what they have been through but this week Simon and I ditch the kids, go alone and tell our story. It's a place for the two of us to face the future together up close instead of trying to Christmas shop and drink our way through it. It's the most appalling hour since the day we were told but it's a tiny start at taking it out of its box and looking at it. Then we put it firmly back in its box and go home.
Tonight Felix decides to skip scouts, Simon is at his Christmas party hopefully seeking anaesthesia in alcohol, and the kids and I decide to light the fire, put on a dvd and open a big tin of quality street. Just as I am cooking supper and the kids are ballroom dancing around the kitchen Kathy, Rose's oncologist, phones from the Marsden. She wants to run through Monday's forthcoming meeting with the thoracic surgeon and remind me that Simon Jordan will not operate if the tumours have got bigger or more have grown since the first scan. Just in case it's slipped my mind.
In the autumn we were referred to the Family Therapy unit at the Maudsley by our GP for the children to talk about what they have been through but this week Simon and I ditch the kids, go alone and tell our story. It's a place for the two of us to face the future together up close instead of trying to Christmas shop and drink our way through it. It's the most appalling hour since the day we were told but it's a tiny start at taking it out of its box and looking at it. Then we put it firmly back in its box and go home.
Tonight Felix decides to skip scouts, Simon is at his Christmas party hopefully seeking anaesthesia in alcohol, and the kids and I decide to light the fire, put on a dvd and open a big tin of quality street. Just as I am cooking supper and the kids are ballroom dancing around the kitchen Kathy, Rose's oncologist, phones from the Marsden. She wants to run through Monday's forthcoming meeting with the thoracic surgeon and remind me that Simon Jordan will not operate if the tumours have got bigger or more have grown since the first scan. Just in case it's slipped my mind.
Friday 4th December
The rain has finally stopped. It has rained non-stop for weeks - so hard it has brought down the ceiling in the spare room where the rain is pouring through the roof. When I think back to the last few weeks it will be against the backdrop of a monsoon starting with the day at the Marsden when we couldn't see the road through the rain. But today it is blue and sunny and freezing.
The children are in advent heaven - they have got chocolate calendars, Playmobil calendars, an advent candle...so many things to fight over and all before 7.30 in the morning. There is too much excitement about the next few weeks to think too far into the future and I decide to seize this moment of optimism/denial and go and get our tree - it's far too early but who cares. I get carried away, buy mistletoe, a wreath, more decorations that we don't need, more candles and the tree. It's brilliant.
The children are in advent heaven - they have got chocolate calendars, Playmobil calendars, an advent candle...so many things to fight over and all before 7.30 in the morning. There is too much excitement about the next few weeks to think too far into the future and I decide to seize this moment of optimism/denial and go and get our tree - it's far too early but who cares. I get carried away, buy mistletoe, a wreath, more decorations that we don't need, more candles and the tree. It's brilliant.
Tuesday 1st December
We've known about Rose for four weeks. Our whole life now is a fantasy - Rose goes to school, to clubs, to play dates, to Brownies, to violin lessons. She has never looked so well or gorgeous or been so much fun - she has colour in her cheeks and is packed full of seven-year-old energy and life. I literally cannot believe this is happening to her. Tonight I picked her up from a friend's house - the girls put on a show and sang crazy songs giggling so hard they couldn't get the words out and as we left I wondered whether she will ever go back to that house again. My mind has a life of its own while I go through the daily motions of school, tea, homework, stories, bed. The days are ticking by and this Christmas amnesty will not go on forever. Today a repeat CT appointment fell through the door for 5th January and I felt sick. I wanted to phone the Marsden and say she couldn't make it, it's the first day of term, she's got stuff on that day, she's busy being seven.
I read a report from Medline sent to me by a friend about a Canadian girl, an osteosarcoma survivor from the 70s, who had 11 lung resections to remove metastatic tumours in a two year period. They treated her cancer hard and aggressively and she survived. I love this report so much that I print it off and put it in my purse. The same day I have to take down two fellow osteosarcoma sufferers' blogs from 'Favourites' on my pc at home because they have both died this month. I know in my heart the Canadian girl is a statistical blip.
I read a report from Medline sent to me by a friend about a Canadian girl, an osteosarcoma survivor from the 70s, who had 11 lung resections to remove metastatic tumours in a two year period. They treated her cancer hard and aggressively and she survived. I love this report so much that I print it off and put it in my purse. The same day I have to take down two fellow osteosarcoma sufferers' blogs from 'Favourites' on my pc at home because they have both died this month. I know in my heart the Canadian girl is a statistical blip.
Monday 30th November
A whole week of limbo land has passed. This is the new normality. Everything is as it was - every day we all go to the places we're meant to go to and do the things we're meant to do as if nothing had happened. Is this denial? I'm not sure it's that but no one knowing and the hospital not doing anything is certainly helping us make believe that it hasn't happened at all. Perhaps when they re-scan her lungs in January the tumours will have spontaneously disappeared.
It's very comforting no one knowing - a bit lonely but on balance comforting. I am saved a whole melting pot of peoples' pity and fear which is inevitably round the corner and the longer I can hold it off the better. There's nothing to say and I dread people trying to say it anyway.
Four weeks till Christmas and Rose's 8th birthday - she's got a lot to look forward to and that's all that matters now.
It's very comforting no one knowing - a bit lonely but on balance comforting. I am saved a whole melting pot of peoples' pity and fear which is inevitably round the corner and the longer I can hold it off the better. There's nothing to say and I dread people trying to say it anyway.
Four weeks till Christmas and Rose's 8th birthday - she's got a lot to look forward to and that's all that matters now.
Monday 23rd November
I need a plan. I need to control tomorrow today and to know a little bit more about how things will go for Rose. So I make an appointment to see our GP to tell her about Rose's relapse. I can feel the Marsden slipping away and know that this is how the future will be - they are about actively treating children suffering from cancer and that's not us any more. Our GP is lovely although I hadn't realised she is also about eight months pregnant. Because I need a little more pain in my day. We have a conversation about community palliative care and I cry and cry but then feel much calmer. I am facing it all now and it simply can't get any worse - but it might get better. On the way home just-call-me-Toni, the Australian registrar from the Marsden, phones fresh from the video conference with the Brompton. They don't want to do anything until three months after the original chest x-ray, re-scan and see how fast-growing the tumours are. We had agreed not to put her through her any excessively aggressive treatment but this strikes us both as just a little too hands-off for our liking.
I take the name of the thoracic surgeon in the meeting and later that night Simon and I look him up on the internet. He is the consultant attached to the London Sarcoma Service working out of the Brompton and specialising in paediatric bone tumours with secondary lung metastases. This is our man. He is about our age and has a confident smile. We sit staring at his picture on the computer for ages willing him across cyberspace to have all the answers. Poor man.
I take the name of the thoracic surgeon in the meeting and later that night Simon and I look him up on the internet. He is the consultant attached to the London Sarcoma Service working out of the Brompton and specialising in paediatric bone tumours with secondary lung metastases. This is our man. He is about our age and has a confident smile. We sit staring at his picture on the computer for ages willing him across cyberspace to have all the answers. Poor man.
Sunday 22nd November
The weekend is not going well - hot on the heels of parents evening comes the Frost Fair at Rose's school. The school is dressed for Christmas, it's a frenzy of Santa's grotto, mince pies, presents to buy and healthy children everywhere. Rose is in a state of feverish over excitement and I feel sick to my toes just to be there. I stand paralysed among hundreds of parents listening to the senior school girls singing carols unable to move or speak. I play this-time-last-year and this-time-next-year in my head. Eventually I coax her away with a present from Santa and we go back to Dulwich College to the rugby where I feel a lot safer.
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