Friday, 26 July 2013

Coke Floats & Chemo: Turning the corner & frightening his mother

Coke Floats & Chemo: Turning the corner & frightening his mother: Today, Toby turned the corner. Totally, utterly completely, he is on his way back to us. I'm almost scared to write it down in case it s...

Turning the corner & frightening his mother

Today, Toby turned the corner. Totally, utterly completely, he is on his way back to us. I'm almost scared to write it down in case it somehow tempts providence, but that young man of mine never ceases to amaze me with his fun-loving but doggedly determined and tenacious spirit. 

"Turning the corner" really doesn't begin to describe what Toby has managed to do today, He is as skinny as a rake, completely exhausted and physically weak beyond belief, but just look in his eyes today and you'll see that his sense of fun and mischief are totally back in business. Today he was the absolute reigning monarch of his bed, holding court and charming nurses, blowing kisses to whoever passed his doorway, squeaking happy noises all the time and just beaming from ear to ear all day. He's even been out of bed a few times to explore the ward and plan some fun for when he has a bit more energy. When I left this evening, not only did he blow the most flamboyant kisses from his bed, but he then got up and followed me to the lifts, where he laughed his head off waving energetically as the doors closed and I disappeared. 

The doctors are as baffled by his sudden recovery as they were about what made him so ill in the first place. There were never any diagnostic breakthroughs or sophisticated treatments. Right up until yesterday he was still such a cause of concern that a senior Consultant was ringing the hospital for updates from her holiday. 

It will still be several days before he is well enough to come home, but for the first time in nearly a fortnight I can actually believe that he will come home. Watching him so desperately ill, and slipping through our fingers further every day has been just beyond heartbreaking. 

I know in my heart why this has happened - thanks to Facebook, this blog and twitter, I've been overwhelmed and humbled by knowing that hundreds if not thousands of people have got behind my family and prayed their socks off, willed the universe to help him, sent us healing thoughts, good vibes, positive energy, whatever you want to call it, and altogether you made sure that Toby has been wrapped in a blanket of so much love and concern, the perfect condition for a miracle to take place. Thank you so much. 

Toby knows that when he gets home, he's going to have a great big party. With his very limited speech and communication, this evening he was able to make it totally clear that he wants cake and candles and presents and hide and seek and songs and games and then he just said "Toby's Birthday!" OK so it's nine months too early, but why ever not, eh? 

Here's another photo of Toby at his School Prizegiving Evening, taken just a few hours before he became so ill. You can see why I always felt that Male Modelling would be the ideal career choice for him, if only because he is so gorgeous. However if he ever had to fill out an application form for the post, I know exactly what he'd write in the box that asks for "Hobbies and Interests". He'd have to own up to his absolute favourite extra-currucular activity "Frightening the living daylights out of my mother".

And now, I'm finally off to bed, where I can sleep well and unworried for the first time in ages. 


Toby, just hours before he got so ill


Monday, 22 July 2013

Coke Floats & Chemo: Toby and all your goodwill

Coke Floats & Chemo: Toby and all your goodwill: Yesterday's blog post about Toby has gone crazy, and has already become my most read post of all time, and I cannot thank you all enough...

Toby and all your goodwill

Since I wrote about Toby yesterday, it's been like there is a tidal wave of love, goodwill, support and prayer really coming straight in Toby's direction, and I can't thank you enough. It feels like we're are being overwhelmed with  a kindness so real that I can almost touch it. If only he could somehow tune into it too, it's certainly powerful enough to wrap him in love and carry him right out of trouble. 

I wrote yesterday just before heading back up to the hospital for a long, difficult evening with Toby, and when I got home at nearly 2 in the morning, it was humbling to realise that, while I'd been cuddling and singing to him to distract them having to put yet another line in, so many people, most of them complete strangers, were caring about us so much. 

I'd love to say that Toby is better, but he isn't, he is still heading straight towards serious trouble. However, there has been one significant and positive change - his medical team have really started pulling out all the stops, and they are proactively trying to find out what's wrong, and as fast as they can. They have also listened intently to my fears and concerns, and they are doing everything and more. It's a race against time now, can they catch Toby before he really falls? 

Maybe Toby hasn't quite picked up on all the love coming his way, but it really feels as if his medical team have done so, and that they are on the same side, everyone working together to pull him back to us.

If you haven't met Toby, here's a video of him at home having a fairly mellow moment with Francesca, his big sister, and Dewayne, who is a very good friend of both Toby and the whole family. This was filmed while I was upstairs in bed following a particularly difficult chemo session last November, and Francesca and Dewayne spent the whole evening trying to distract him because all he really wanted was "Mummy". 


video

Sorry Dewayne! Sorry Francesca! But just think, you two, wouldn't Toby just love to see himself on the "puta"?!

Sunday, 21 July 2013

Coke Floats & Chemo: The Thirty Ninth Time

Coke Floats & Chemo: The Thirty Ninth Time: Awful awful, heartbreakingly dreadful week. Toby, my 19 year old who tackles life head-on like an out-of-control speeding tornado but much m...

The Thirty Ninth Time

Awful awful, heartbreakingly dreadful week. Toby, my 19 year old who tackles life head-on like an out-of-control speeding tornado but much more fun, is extremely ill and in hospital, subdued, so terribly ill, frightened and confused. Toby is also severely learning disabled, with the understanding of an average two-year-old, and with a similar level of speech - he can talk in one and two word sentences, but can only talk about the concrete real things in absolute terms, feelings, abstract concepts and the if, buts, maybes and perhaps of the world are completely beyond his comprehension. 

I thought having cancer was tough, but this is so much tougher. Toby is the only person they can find in the whole world who has his particular medical condition, so there is no expertise, no research, no cutting edge treatments, no tried-and-tested treatment protocols that his medical team can facilitate to make him better. 

Toby has a long history of baffling the medical profession. When he was little, we spent 
most of his first 6 years in hospital, across 38 separate emergency admissions. He would just get progressively sicker and sicker. While the team in charge of his care tried everything they could think of to make him better, I would watch him slipping away by the hour. It was always a race against time, and Toby took us to the very edge over and over again. During each of his 38 admissions, there was at least one crisis point when no one expected him to survive. Each time, from somewhere, he found the Herculean strength to turn the corner at the very last minute, but there were never any guarantees that he would do it every time. 

It's been well over 10 years since we last had a life-threatening emergency with him, everyone thought it was a thing of the past, but you know, I've never been able to take my eye off the ball with him, every morning all through his life I just hope that he'll still be well by the evening. 

Now we're back in the same place, watching and waiting and hoping and praying that he can turn it around one more time. He has now been in hospital since Tuesday, and we are watching him deteriorate by the hour all over again. It's like he was at the top of a very long, steep slope and he's hurtling towards the bottom at a terrifying speed, and they still can't find out what's wrong with him. Unless they can catch him while he's falling, and push him back up the slope with the right treatment very soon, in a day or two he's going to be in real trouble. At the rate he's going, and based on previous experience from all those years ago, I reckon by Wednesday he will be in intensive care on a ventilator, or Heaven forbid, even worse. 

Being Toby's mother has always been a very frightening and lonely experience. Over his early years, by default I became his expert, and I could always see, way before the doctors could tell from his clinical signs, just how much trouble he was in and what was needed to reverse it. Toby's clinical signs are completely at odds with everyone else's, and that's just part of his condition, but it takes a very special doctor to be confident enough to go against everything they have been taught and disregard the findings of blood tests, X-rays and all the other test results. It's also hard for a mother to convey medical knowledge and experience to a new medical team without coming across as neurotic, or pushy or just downright mad. It often felt that they were looking for a needle in a haystack, by laboriously ticking off one by one the 100 tasks on a checklist. They'd be on Number seven or eight, and I would have rushed ahead and found it at about Number 83, shouting "look, here it is, come and get it". They would not be able to grasp that someone completely without medical training has found it so quickly and easily, so either I must be fibbing or a complete loopy-loon. 

Eventually they would get there, and I would say, "But I told you that 2 weeks ago". The number of times I had very senior Paediatricians apologising that I hadn't been taken seriously eventually paid off, and they listened. Sometimes that was scary too. Always before I took him to hospital I would have tried every trick in the book I could think of the reverse the onset of illness, and when I was completely stumped I'd want them to have all the answers. When they instead say "And Mum, what do you think we should do first?" it can be quite daunting. 

This time around it's the first time he has ever been in the adult part of the hospital. New doctors, new nurses, new ways of doing things, new protocols, it's all a huge learning curve for me, and of course, for the doctors. My biggest fear was that they would simply not entertain an "adult" being allowed to have someone with him around the clock to comfort his distress, advocate for him, and to keep him safe. On that score they have been marvellous. The hospital now has a specialist Leaning Disability Liaison Team, and quite by chance, two of the four-strong team have worked with Toby in the past and love him to bits. (You would need to know Toby to understand this - everyone who is open to getting to know him ends up loving him to bits, because he is so hilariously witty in a very slapstick way, so gregariously loving to everyone, and he has more personality and character than virtually anyone else you'll ever meet!). They have managed to install a recliner chair by his bed for someone to sleep on, they have acquired a parking permit for us, they have even managed to ensure we get teas and coffees offered to us on the same basis as patients. They have firmly established that we are not Toby's Visitors, we are Toby's Carers, or what I prefer to call us, "Toby's Team".

I can't thank my fellow members of the Toby Team enough. There are 9 of us altogether, and between us we are with Toby right around the clock, family and friends that are trying to let Toby understand that he is not alone during this horrible time. 

I'm out of practice at knowing exactly what's wrong with him, and how to treat it, but I've got a fair idea which I've shared as gently as I can. This new team are as committed, caring and on-the-case as you could hope for, but I have to respect that they are on a steep learning curve too - Toby is as frightening and new to them as they are to us. They are well on the way down their checklist, and let's just hope they reach the right needle in the haystack in time. 

Here are some pictures of Toby, amazingly all 5 of them taken this week. Monday evening he was so well, and so handsome in his new suit and bow tie at his very last ever school Prize-giving evening. By the middle of that night, he was on his way down. The last photo of Toby was taken on Wednesday morning, just 36 hours later, all happening so heartbreakingly quickly. 


Too excited to look at the camera
He was loving the applause
So many certificates too




Looking at his "Leavers Book" with his brother, Adam
 

Any prayers or loving thoughts sent in Toby's direction right now would be so gratefully received, thank you. 



Tuesday, 2 July 2013

Coke Floats & Chemo: Not doing cancer properly

Coke Floats & Chemo: Not doing cancer properly: A thick cloud of overwhelmedness has hidden me away from a lot of reality over the past few weeks. Some sort of mini-hibernation, where I&#...

I'm not doing cancer properly

A thick cloud of overwhelmedness has hidden me away from a lot of reality over the past few weeks. Some sort of mini-hibernation, where I've barely had the energy to go online, engage with friends, or cope with anything more intellectual that the act of putting one foot in front of the other. If you are one of many lovely people I haven't been in touch with recently, please don't take it personally, I've been here in body but not always in spirit. I think it's the result of too much happening too quickly over the past year or so, and spending the year not just fighting for my life, but also firefighting crisis after crisis after catastrophe, with no time to stop and process or absorb what's happening. I'm fine, but just mentally exhausted, but I think I'm beginning to come out the other side relatively unscathed. 

I think the whole cancer spread news has hit me harder than I wanted to admit even to myself, and on lots of different levels. There is so much hype and nonsense surrounding breast cancer, all that pink, all that earnestness about awareness, and it sometimes feels as if there is an expectation to do breast cancer “properly”, and everyone seems to have a “breast cancer survivor” story to tell. I now that I'm not going to be a member of the BC Survivor's club, and that I've failed in doing it properly. It's unspoken, and everyone is lovely, and maybe I'm totally oversensitive, but I do detect from certain quarters a very real sense of disappointment, as if I didn't fight hard enough, as if I've let the side down in some way. Maybe it's coming from me rather than other people, but there has definitely been a period of adjustment, a few weeks trying to get my head around the enormity of it all.

Don't worry, I've no intention of crawling into my death bed for a very long time to come, and at no stage has anything even close to full-blown depression threatened to knock me for six. I just needed, and may continue to need from time to time, some quiet headspace to catch my breath, rearrange the battle plans, pick myself up and get going again.

And heck, have I got going! Three weeks ago, I spoke about needle-phobia at the NIVAS conference, and it was really well received. WM came with me, and we were thoroughly spoilt and made to feel like VIPs, and it was a really lovely day, not least because I was presented with the largest bouquet of the most beautiful flowers I have ever seen. 

My gorgeous flowers

Well, word has spread, and I've now been invited to talk to a group of nurses at UCH, a leading London hospital, as well as to another group of nurses at the Royal Marsden. In addition, I'm also going to be leading Laughter Yoga sessions for staff at both the hospitals too.

Laughter Yoga has featured quite a bit this week, I ran 3 consecutive workshops at a local school for children with autism. The first one was with a group of 9 and 10 year old boys, all severely autistic, then another workshop for the staff, and finally a workshop for the brothers and sisters of the autistic children. Three very different sessions, adapted appropriately for each group, but each workshop went really well, and it was so rewarding to see the autistic boys come out of their shells and engage, and best of all, laugh long and loud with us. I wouldn't have missed the day for the world, it left me with feeling energised and very humbled.

We've also got another performance of Coke Floats and Chemo on Thursday, and it's totally sold out! I had better find a minute to revise my lines or they'll all be clamouring for their money back. To be honest, I'm really quite looking forward to it.

Sad news recently is that Steve, our dog, has moved to another house where I think he'll be more settled and happy. His new family are very experienced dog-owners, with other dogs, a huge garden and they live in the countryside. He was with us for four months, and we tried everything we could, two different trainers, intensive one-to-one residential training, Saturday morning lessons in the park with other dogs, we even had him neutered to see if it would calm him down a bit. Eventually it became obvious that he had picked up that I wasn't as well as I should be, and he was becoming more and more dominant around me. I was getting bitten several times a day, which is a concern because I've lost lymph nodes on both sides; any tiny cut could result in lymphodema, which is a lifelong disability. We also had to have him on the lead all the time, even indoors, because he was so destructive with furniture and belongings. It was a tough decision, because he was also adorable, and sometimes I think you fall that little bit more in love with the ones with huge personalities who can be very naughty. We had a few very sad, tearful days, but there wasn't really any other choice. It was my youngest who made the decision in the end that he must go, and I was very proud of his maturity and judgement in doing so.

My priority has to now be to stay as well as I possibly can for as long as I possibly can. I've concocted an “anti-cancer” recipe, and I'm cooking it up in batches and having it for breakfast every morning. When I can get my act together, I'll take photos as I cook it and share the recipe here. I've put a lot of research into it, and I've found a way to combine all the foods that seem to really work to kick cancer cells into shape. I'm also doing Laughter Yoga every day – laughing is incredibly good for you, releasing endorphins, increasing oxygen intake, and boosting your immune system – as well as drinking green tea by the gallon and forming an on-going relationship with my exercise bike. Does anyone actually ever get to like green tea? I loathe the stuff, but it really does work at keeping cancer cells in their place, so it's three cups of the horrid stuff regardless.

One thing's coming up that really is a bit exciting, but also will definitely be a bit tear-jerking poignant too. Toby is leaving school soon, and he has his leaver's ball on Friday. He was so proud to try on his new suit to wear to the ball - it's his first ever posh suit and tie, and was thrilled with it. 
Toby loving trying on his new suit
There's so much else that's going on, mostly great stuff, but some less so. I'd write non-stop til the week after next and bore you senseless if I talked about everything. So, until next time, and hopefully it won't be so long until then, please take care of yourselves and your favourite people, and I'll do the same.