Tuesday 31 March 2015

The End?

Last Thursday the consultant met with us following Ruben's PET SCAN and MRI  (the third and still rather terrifying in its seriousness). He reported that his results were perfect. The disease is completely gone. Ruben has, he believes, less than a 10% chance of it coming back. We cried. Not Ruben. He was too busy showing Dr Daw his school report commending him on courage and diligence.  He was indeed pleased. Dr Daw is remarkably understated and his smile was very lovely to see.

He reminded Ruben what he's been through and how easily others will forget when he will not. He reminded there will be low days as well as the upbeat physicality he feels right now. He was immensely reassuring and kind.

 It was as strange an appointment as the very first one was, when we leaned against the Teenage Cancer Trust signs, unable to say the word. The beginning and end of this cancer experience have been surreal, even edgy. (Boundaries and borders often are. )  Juxtaposed as they are with the real world, leaving it as we did in September 2014 and returning as we are now in March 2015. The bit in the middle was cancer and chemotherapy, nurses, wards, and appointments and sickness and being looked after, us as well as him. Now we've emerged back and the horror of it all, the surprise and shock and strangeness feels amplified.

Forgive me I haven't told you all personally yet. I will of course.

We are going away for Pesach and I can't imagine it yet but I'm sure sunshine will be healing. And the liberation will be that bit more real.





Thursday 5 February 2015

Cooking Again


It's been so hard to write since the beginning of January. It's strange the sheer relentlessness of the illness and what's needed to treat it becomes so deadening at times. Even with such a cheering and positive prognosis, the day to day rhthymn of life is demanding. 
Ruben takes on average 25 pills a day, often more. I have to remember dosages and timings. I need to time doses to enable the last to be early enough to be manageable for sleep but late enough to allow a gap since his early afternoon ones. Steroids make him sleep fitfully and wake for long anxious periods in the night. Of course he needs reassuring during those periods. And then sometimes everyone wakes up. Even the cat walking across our backs and curling up on the duvet licking the children's hair as Judith Kerr's Mog did.  And I stagger into the day, to work and operate well, which I invariably don't. 

Everyone understandably needs a lot of care and attention. There are countless appointments, for things which really help; talking, playing, acupuncture, maths but it's like a job just managing it all. 
I think we are seeing the end in sight. I can't let us feel enthusiastic relief or gratitude yet but sometimes it leaks into our exchanges. 
Dora and I have a late night treat. The boys are asleep and we watch the very lachrymose The Fault in Their Stars , an incredibly cheery film, (two teens with cancer, the one you least expect dies first). Dora turns to me and says with feeling, "we are so lucky, Mummy." (This from a child who has expressed feeling anything but.) I agree with her.  She then tells Ruben. He doesn't agree. In fact he pushes her to demonstrate just how much he doesn't agree. 

It's a tightrope and the relief that he is responding, and surely recovering has to balance delicately with his experience now. He feels everything so deeply and articulates with such awareness the heaviness of the disease and his misery with it. 
His hair is growing back, but he's not ready for it. He wants hair to start when treatment stops. 
He continues to feel lousy. And he asks for Home School days. I understand him, he wants to be well and strong for the kids at school.  But if he has a HS day tomorrow he has to read the whole of Romeo And Juliet in his bed. Not sure what he'll choose. 

I'm cooking all meals again. Kids are happy, I'm more tired because I'm working as fully as I can. But it's starting to feel a bit calmer.  I get orders for salmon teriyaki, roast chicken, ( only like grandma Toby) celery soup ( only like grandma) it goes on ...
I've regressed to having no time for anything! Especially being in touch. I regret that. Now it's synagogue work and Ruben and the children to manage; even with help it takes time. 

Nice and new things are becoming entrenched. Ruben's lessons with John. He loves his Bar Mitzvah prep. He sent a save the date to his friends for his Birthday/recovery party 25 th April.  We're planning sunshine over Pesach holidays, and Rafael and Dora seem happier. Although her maths test was not happy today. One more cycle to go. Our GP said it will all hit only after the chemo is finished. But Like Etty Hilsum I feel it even amidst the horror; sometimes in moments of deep gratitude I have the urge to kneel down ....
We should be ok and are already proving to ourselves we may be. 

Sunday 11 January 2015

Still Going ...


Ruben and I are watching the images of Paris today while we wait at the Whittington (10 pm) with a problem in his picc line. It was leaking blood while we were watching The History Boys. ( was a revelation to show him that). 

It feels an aeon since Chanukah but since then Ruben had cycle 4 of chemo. Which was fairly jolly to receive onChristmas Eve, nurses in onesies and quality streets practically given intravenously. But sick nonetheless. By 8.45 pm when chemo is still not finished I question why he's an out patient on long days. He feels worse getting home. So holidays were actually full of post chemo sickness but it was nice with sisters and cousins by the sea. And the most unexpected new year I would have imagined, Ruben poorly in bed while we toasted him with prosecco and quails eggs. He then revived dancing to Michael Jackson while we help him think about his wish from Starlight . A game of tennis with Rafael Nadal?
I had time off and it was good for us all to be out of London with wind blowing in our faces, and tree top walks at moor valley park. But I'm mostly back at FPS and feeling positive about our work together. These are strange times personally and even more so publically and the synagogue feels more important than ever. 

Now we're trying to enter 2015 with energy and optimism.  The same battle with school, who are immensely patient. Ruben is sad and describes the steroid effects as 'too heavy to bear'. It's painful watching his tears particularly in the mornings when he feels worse. Intellectually he says he knows it's going to finish soon but right now it's too hard.  We're planning with M and D a celebratory moment of sunshine. I hope we can get insurance for him. My concerns feel surreal.
Dora begged me to start cooking daily again. I think understandably for her, food = parenting. So I need to return to the kitchen. 





Monday 22 December 2014

Chanukah this year ...

Ruben became spontaneous quiz master at the Chanukah party on Saturday night; the first time he chose to be noticeable and in the limelight. Even in a onesie. It was great. 
And I'm certain helped it be a very jolly Chanukah at FPS. After ten days of being ill and out of sorts, missing almost the entire last two weeks of school. He rallied onto This Morning's Xmas Party Friday morning and gave a rather poised interview with Philip Schofield.
We're all tired. Rafael is so tired he shouts when anyone talks to him. 
We're in UCLH today to begin cycle 4 of chemo. He's upbeat and delighted to be playing Xbox with his friend on the ward Varun. Last night he woke anxious with anticipation, his chest hurting. He described the feeling of chemo entering his veins. He's so articulate about it. Our GP suggested this whole experience won't hit us until the chemo stops. 
A whole day of waiting until chemo started at 6 pm. And the only time he felt ill frightened was while I had slipped out for a walk and quick rendezvous with my friend Amanda. Ruben slept fitfully after I'd run back. He was uncomfortable and tearful and ate watermelon and crisps to help the evening steroids. 
Still there at 8.35 pm, and with a taxi waiting I ended his FIFA 14 game before its natural finish and then understood how cruel I'd been. Lit the candles at 9.30 pm we're back again tomorrow. 
I don't get it right much of the time. 

Monday 15 December 2014

Highs and Lows

We just had the most extraordinary weekend of highs and lows. Quiet and early shabbat dinner with Annabel and kids. They loved seeing each other and tasting Julie's cocoa cola chicken. Ruben managed bat mitzvah service and party and special sleepover with g'ma and g'pa, but was in hospital Sunday complaining of sore chest and feeling unwell. Sent home with antibiotics. But poorly through the Janoffs bringing us tea and homemade mince pies and pumpkin loaf from the allotment as they graciously adapted to a change of plan.
But he was back again by evening with a soaring temperature and definite chest infection. He slept there last night. Home tonight. Our plans for a full week at school thwarted again. 
But all this illness and feeling terrible has lost the fear and uncertainty it had before. We can bear it now. 
D and R fed up that their plans and desires sometimes get pushed aside. They're being patient and sweet on the whole. Even though Dora frequently complains; 'it's not fair my brother has cancer...' The full meaning of which  is heavy with complexity. But they still worry about him.
Dora:  'Is it frightening that he has a chest infection?'
Me: No, it's expected.
Dora: Then why the fuss? 

After months of no temperature. The 37.8 Celsius was our sign to get him  to the Whittington. He was particularly vigilant.


I am preparing for Chanukah with a frantic last minute online shop for lots of small bits and one Spurs kit. I feel bad I didn't go for the personalised name now ...
I hope we manage to let the light in, and do a bit of re dedication here at home. Tomorrow's first night seems auspicious. 

Sunday 7 December 2014

Beautiful Scans


On Wednesday we were getting the results of the all important 2 month scans. 
They were beautiful. The cancer has practically been cleared. The comparisons with the initial diagnostic scans were staggering.  The extraordinarily strong chemotherapy is working. Ruben has been so sensitive to it but so has the lymphoma. It was so hugely relieving. My mind has wondered in the small hours to the potential alternative causes for his back and head pain. But it's just been the excruciatingly strong medicine. He'll need three more months of chemotherapy and no radiotherapy. We'll finish treatment in March. We were a little euphoric, and very very grateful to the hospital team, but Ruben has been focusing on the 10 % recurrence rate in the first year. I'm not. We'll work on getting him well, strong and confidant and his hair growing back, of course. We've postponed his Bar Mitzvah until November 21st 2015. All that should have happened by then. 

We'll also work on helping the other two emerge as unscathed from this as possible. I took Rafael to a play therapy session at Chai. He loved it and said 'thank you for having me' as he left. Dora's teacher offered to shave his hair to raise money for Ruben's efforts. Dora and Rafael were very involved. See picture.

It's been a very strange week though, from feelings of euphoria to a tired sadness. Perhaps it's inevitable, after holding things so tautly.

I feel brighter today as we prepare for the concert arranged by Gillian Stern and her orchestra. Barnet Symphony Orchestra are raising funds for Ruben's JustGiving/Ruben-Qassim.
Many people have contributed cakes, music, time and poster design. He's super chuffed and I'm super touched by it all. 

Wednesday 26 November 2014

Things in the balance ...


Yesterday I sat watching Ruben in his MRI scan. My first born, still such a baby in so many ways having to lie quietly and immobile inside the long white tube. In all the focus on the minutiae of the illness and its consequences, for that moment the enormity of his dividing cells loomed large. Today it's the PET scan, glucose and radiation pumped into his veins to show how the cancer is thriving. He's restless lying on the bed waiting for it to flow round all his body. 

How did this all happen?

But in all of it I want him, and us to gain and draw goodness and learning from this experience. Even amidst everything. 

Yesterday we had lunch with mum, a break from hospital food. She scooped us up and Ruben eats udon noodle soup, tofu rolls and vegetable katsu curry and frozen yoghurt. The steroids are working furiously. And he's pained by the weight gain, and currently what he'll wear and look like for the bat mitzvah this weekend. Healthy concerns I guess. At home we're still being fed with much love and kindness, paella from A last night, better than any restaurant. It will be strange for everyone to go back to my cooking and not ordering what they like from our friends. 

I haven't talked yet much with others. No parent groups yet or talking to those who've been through it. I will though. Meanwhile at home life continues. I am woken by Rafael asking , what the French Revolution was about. And how much Van Gogh's ear must have hurt. I forgot not to feed Ruben this morning before the scan, both R and D stopped their breakfasts in empathy. 

I'm working more and more and trying to be present and available for the synagogue and initiatives I/ we have begun.  It necessitates holding in and back my personal fears and anxieties. Or translating them into something communicable and useful for others. We're here in the hospital today until 9 pm, arrived at 9 am, chemo starts this afternoon and I'll miss Rabbis Goldstein  and Middleborough presenting their new Jewish Book of Comfort at our synagogue.
I'm sorry as I'm the first in line to need it.