Saturday, 12 July 2014

Self Reflection

I can't believe that I haven't posted since May. For me, a lot has happened so I guess my focus has been elsewhere. I am finally back at work. I went back in May once I had got the scan out of the way. I didn't know how I was going to get back. I was spending many days in tears and a lot of effort was needed on my part to get me back to a better place. I became a little obsessed with a healthy diet and yoga initially, but I think the counselling I've been having has probably helped the most. Reflection. Questioning exactly what it is I'm scared of. I was trying to carry everyone when actually what I needed to focus on was me. I wasn't voicing what I needed. But I did know that inside, I felt like I had an elastic band that was twisted so much that at any moment it would snap.

This helped me to cope with the mixed emotions I felt when people, on my return to work, would say 'Oh, you are looking well'. It's amazing what a face can hide.

What I did know, was that I'm not the same as I was. Experiences like this change you, and it's taken, is taking, time to learn who I am now.

Wednesday, 7 May 2014

MRI done and dusted...for now!

He did it! He managed the MRI without an anaesthetic, and didn't go crazy about the canula. Our hard work paid off! I should never have doubted him. Though without the preparations it'd be a different story.

The canula was going to be the biggy for him, and he hated even the look of the magic cream, so I was a little cunning. Over a number of days before his scan date, I'd go into his school at lunchtime and put the cream and dressings on him. I'd do it after he'd eaten but before play time started - that way he was desperate to play and any fuss that he made just delayed his playtime. Once the cream was on, he had playtime to distract him from the discomfort of the dressings. It worked a treat. He'd come home, amazed that the backs of his hands were numb. He thought it was 'magic' how he could scratch himself and not feel it! I mean this is what I'd been saying all along to him...that's why they call it magic cream! But, I guess sometimes you just can't trust your mum, you have to find out for yourself! So, after a couple of times he trusted that yes, indeed, the magic cream did work.

On the big day then, he let me put cream in four different places, insides of both arms and backs of both hands. Good advice from the play team - put it in every possible place. His veins are pretty difficult to see, so the night before I gave him a hot bath and then put ink dots where I could see his veins, as I was scared that I'd put the cream in the wrong place! When I applied the cream that day I was shaking as I was so nervous. It felt like such a responsibility. It will be easier next time I'm sure.

It was worth putting that much cream on as his hands were useless and one arm wouldn't keep the canula in, it kept slipping back out, so they had to do it again on the other arm. He had a lovely bruise the next day.

I secretly dosed him up with some Benadryl mixed in with milkshake, a trick I learnt from the team in America. If it's a one off he doesn't notice! This makes him drowsy. It worked a treat as once he was in the scanner and had got over his initial panic and had a cry, he fell asleep. Awesome! It helped too that he was absolutely exhausted. He also stayed asleep whilst they injected the contrast dye through his wiggly. I don't think he would have liked that.

I stayed with him during the scan and was able to hold his hand throughout. He had 'Flop the dog' his Proton buddy, and his snuggle blanket to keep him safe. His other 'Doggy' had to stay in the locker as he has metal inside him!

 Back upstairs to have the canula removed and job done. I won't say it was easy, but he endured it. He was happy once he received the Skylander Giants character that he was promised. It made it all worthwhile for him!

I think it was an amazing achievement on his part, and a huge relief for me.

Sunday, 20 April 2014

A year has almost passed.

On Friday the 25th April it will be a whole year since Joel's initial CT scan at Treliske, when we found out that he had severe obstructive hydrocephalus with a mass legion, likely to be a brain tumour. I remember that day well. We had arrived at Treliske with no appointment letter, just a telephone message about where to go. When we arrived there, they were not expecting us - turned out we should have been at the hospital in Penzance. However, we were found a bed and waited for an unscheduled slot for a CT scan. Earlier in the week when we saw the paediatrician we had been insistent that Joel needed an MRI scan, however this didn't happen.

I remember how I attended the hospital on my own. I didn't know how long we'd have to wait and Martin needed to be at work. I don't think he really accepted at the time what might have been wrong with Joel. I thought he had a brain tumour but we didn't talk about it. Martin just knew that Joel wasn't right.

Joel's school performance had been declining rapidly since the December. He would stare into space, not hearing when you spoke to him. He would jump at loud noises. He would dribble and his food needed to be cut into small pieces. His arms would tremble and he would spill his food and his drinks. He could no longer dress himself. He had become incontinent, in fact he had been for months - though the doctors thought this not unusual. He had a cold that had lasted months. By the end he could hardly walk - he would stumble and fall. He would always wake with a tummy ache and would occasionally vomit - though he had been prone to this since birth, so we hadn't taken great notice of this.

Each time we went to the doctors, Joel would be Joel and he would charm everyone, putting on a show, trying his very best to walk in a straight line when asked, squeezing fingers as hard as he could, touching his nose as the doctor instructed - he passed a lot of the tests, much to my frustration. It took a lot of insistence and evidence to get his case noticed. I took along a video of him tripping as he walked, and a range of school work which showed his skills decline. This was all suggested by the Brain Tumour Trust's 'HeadSmart' campaign.

Martin had called on his way home from work to see if he should be coming to the hospital. I told him to go straight home as the paediatrician had just told me that the scans were so blurred that they were useless, they couldn't see anything from them. We'd have to come back the next day to have a scan with sedation. After putting down the phone the consultant then came back to say that someone else had looked at them.

I remember the nurses taking Joel away to play. I remember desperately not wanting to be told anything without Martin there with me. I asked if I could call Martin, get him to come. The consultant wouldn't wait. He told me that it was likely that Joel had a brain tumour and that he had to be taken to Bristol urgently.

I remember how calm I was. So cold. So unemotional. I remember calmly phoning school to say that I wouldn't be in work for a while.

I remember thinking how the hell was I meant to tell Martin over the phone. He was currently driving home. I phoned my mum instead who was looking after Thomas. Thomas would have to go home with her. I read out a list of what I'd need for Joel and what Thomas would need. My mum is a rock, at least she is on the outside. I can never read what's actually going on under the surface, but she deals with all that is thrown at her. She has a positive answer to everything. She always makes sense. I don't know where I'd be without her.

Martin's world was shattered.

Joel and I were taken up to Bristol by ambulance that night. I persuaded Martin not to follow until the morning. I can't imagine how he endured that night at home on his own.

My neighbour, who is now a close friend, is a nurse at Treliske and I remember her coming to the ward to see us at the end of her shift. She waited with me and Joel and helped us into the ambulance. I won't forget that. It meant so much.

We arrived at Frenchay around 1am. I had spent the entire journey in the ambulance writing in my notepad - working out my cover lessons for work. Seems crazy now when I look back on it all. I've still got that notepad. Adrenalin. It kept me going from that day until his Proton Therapy, when I crashed.
Joel was taken into theatre at 9am. Martin didn't manage to get to Bristol before he was put under. That scared me. Not knowing whether Martin would see him alive again.

I remember Mr Edwards, the neurosurgeon sitting down with Martin and I, rapidly talking through the surgery that was necessary to relieve the hydrocephalus. The tumour couldn't be removed but he thought they could get a biopsy. The risks were horrendous and we weren't sure of the outcomes.

I remember us both in tears, sat at a table outside the cafe. We had hours to pass. Hours to contemplate our sons life. It was surreal. For me, I didn't feel like I was actually there.

Joel was in the High Dependency Unit where I slept by his bedside. When I think back, I can still remember how he smelt. Iodine or something similar.

Everynight I still trace the line of his scar and cup his forehead in my hand. Wishing that my hands could heal.

The MRI preparations

Just over a week to go now until Joel has his first MRI scan since his treatment. He has always had a general anaesthetic for his MRI's, but since he now needs to have them every three months for the next three years, I thought he should try to do them without anaesthesia. In the States it is common to train young kids up so that they are able to cope with the scan without sedation. I've been looking at their sites and have picked up some tricks along the way...

I ordered a toddlers play tunnel and Joel has been practising laying still in that to get used to the claustrophobia of the scanner. He's been listening to an awful 30 minute long track of the horrible noise of the scanner, some of which sounds like a woodpecker, a pneumatic drill and a persistent fire alarm. He will be able to listen to an audio CD. He's chosen 'The Further Tales of Peter Rabbit' by Emma Thompson. He listened to 'The White Cat' read by Emma Thompson during his Proton Therapy, but can no longer bear to listen to it!

On Friday we visited the MRI department at Treliske. We took photos from the front door of the Tower Block, down to the basement and the reception and waiting areas, as well as a couple of photos of the staff, before seeing la piece de la resistance - the MRI scanner. I thought that with the photos I can put a little photo book together to remind him of what to expect on the day. So far so good. Fairly confident that he can cope with laying still again - I think the radiotherapy is still in his not so distant memory and he knows the importance of laying still and has the visualisation techniques to stay calm.

Our biggy at the moment is him coping with the canula. Typically he needs to have contrast dye. If he didn't need it then we'd only be dealing with the scanner. He hates canulas - with a passion. I only have to mention them and he's in floods of tears, like hysterical.

I am armed with a number of tubes of magic cream and dressings so he can practise just having the cream on his arm. He's managed to allow me to tape a canula on top of his skin whilst playing doctors with Doctor Bear and Monkey. We squirted water through it for a bit of fun. We are closer than we were, though a lot more conversations are needed.

We discussed it tonight and a little bit of bribery (actually quite a lot) ended with him saying that he would give it a go. He would accept the canula without running off down the corridor, like he had previously said he would do.

It's so hard. Trying to prepare him for what's to come. I don't want to do it. I don't enjoy it. I know though how important it is to get him prepared. It will be such an achievement if he can do his scans without anaesthesia, as over the next few years he would be clocking up quite a number of general anaesthetics, which can't be good for such a young boy.

Sunday, 30 March 2014

Mother's Day

'There is no undertaking more challenging, no responsibility more awesome than that of being a mother' President Gerald R. Ford

Ah, Mother's Day! Been having a little browse on Pinterest and just fell in love with some of these sayings, which all seem to ring so true.
'I won't always cry Mummy,
When you leave the room,
and my supermarket tantrums,
Will end too soon.
I won't always wake, Mummy
For cuddles in the night,
& one day you'll miss,
Having a chocolate face to wipe.
You won't always wake to find my foot,
Is kicking you out of bed,
Or find me sideways on your pillow,
Where you want to lay your head.
You won't always have to carry me in from the car,
Or piggy back me down the road,
When my little legs can't walk that far.
So cherish every cuddle,
Remember them all,
Because one day,Mummy,
I won't be this small.'
'I never pulled over the car just to look at horses,
I never was willing to give someone else my last bite,
I never planned on handling someone else's boogers,
I never listened to a song 50 times in a row,
I never found rocks in my dryer,
I never had the power to heal a wound with my kiss......
until you.'
Another saying stood out for me...
'A Mum
is like a
Only in hot
do you realise
how strong she is.'
Before the boys came along, I could never have imagined how rewarding, yet how hard it is to be a Mum. The last few weeks have been quite up and down for me. When Joel was diagnosed last April I was so strong. I knew there was something wrong with him, and in a way it was almost a relief to be told that yes, there was something seriously wrong, as it meant I didn't have to keep searching for answers, which I had spent months previously doing.
After his surgery I had to be strong to get him back up on his feet again, to play it all down when things hurt or when he questioned the scar along his hairline. To protect him when he was playing..always watching.
I had to be strong throughout his scans, helping to play down the general anaesthetics. Making fun and games of things which are definately not fun. It's actually really hard to keep pretending that your boy is a super fast racing car driver whilst watching him writhe around as the gas finally takes over and makes him pass out.
It's been hard, and throughout it all I know I've been strong. I didn't shed many tears between April and December. But now.. I don't feel so strong. It's hit me, since coming home, just what we've been through. And yes, the tears have started flowing.
If only I could just breeze through it like my little boy.

 Joel's Mother's Day gift to me. Beautiful. He has the best smile in the world.


Saturday, 22 March 2014

Joel's mind

Joel seems to have more energy now than he did before Christmas. I don't know how that is. I expect it's purely that he's had a really good rest, and he managed to be more active in America, so he's built up his stamina. Before Christmas he didn't have the energy to go out at play time, he couldn't walk to school, he couldn't do anything after school, and he needed vast amounts of food to give him energy. Last week, he cycled to school twice and walked a couple of times! Amazing! He wants to join a dance club, a gymnastics club and a football club, oh..and a swim club.. he wants to do everything. By the end of the school day though, he's wiped out, and there's no way he could walk home, he can only just make it to the car!

I remember him saying in America, when his treatment had finished, something like 'Well it's good that my treatment is all done, that means I can have a happy healthy life now'. It's interesting how his mind must work to process it all. It was only last week that he said 'Mummy, if I didn't have radiotherapy would I have died?'

I still haven't got rid of this cold virus that Martin and I picked up in the States. My ears in particular are blocked, and I think Joel must be getting it, as not only is he now coughing like me, but I think his ears must be playing up. He said tonight that they were ringing, then yesterday he said that he could hear voices in his ears, and 'was it the bad cells talking?' Funny how his mind works.

He has been so brave, and yet he gets scared over the smallest things. He doesn't want to use the bathroom on his own, he doesn't want to be downstairs on his own. This week he ran out of school with the receptionist to find me, as he realised he hadn't said goodbye properly. He was in hysterics at school when the fire bell went, beside himself ...he doesn't want to be left at his friends party...the list could go on. Funny how he took the treatment all in his stride. My brave soft boy!


Wow, how has two weeks gone since we got home?

Joel has continued to be amazing. We arrived home on the Friday evening and he was desperate to go to school the following day! So, on the Monday he went to school. He woke up desperately keen and excited, but later started to panic saying, 'What if everyone is now better than me?', 'What if I don't know the answers'. He managed the whole week, going in late and coming home early - 'Get me there for morning play time Mummy', 'Pick me up at the end of afternoon play time Mummy'. Sorry Miss Philpott, but I don't think he was too bothered about the lessons, he just wanted to play! By the Friday, Joel had gained 'Star of the Week', and a disco party was held for all of the infants during 'Golden Time' to celebrate his return. A perfect opportunity for a reappearance of 'the Hulk!'

He was ever so proud to have won a football eraser during musical statues. I mean come on, who else was going to beat him when it came to staying still?! Wasn't really a fair game for the others now was it?!