My father wrote this a couple of months ago. It is his perspective, of what coping with a child with cancer was like. I thought that today, being father's day, would be an appropriate time to add it as part of my blog
FATHERS PERSPECTIVE
This is my blog just about a year and a half after my dear
son Alexander was diagnosed with non Hodgkin’s lymphoma. Over 14,000 people
have read his blog which has also sparked some interest from charity groups, a
local and a national newspaper.
So how does a father cope when you hear the words “I’m so
sorry but I’m afraid your son has cancer?”
Surreal, scared, are 2 words that come to mind. I felt it
was part of a movie script; it wasn’t happening to me or my 22 year old son.
I’m watching a movie and he was the main star, my wife and daughter were in the
cast, surely this cannot be happening. I pinch myself to see if maybe it was a
dream but oh no I was wide awake, no dream, no film and no script just that my
beautiful, kind, gentle, handsome son had this killer disease.
Cancer or the “C word” wasn’t new to me after all I had lost
2 grandfathers to it but that was over 40 years ago, both to lung cancer, both
heavy smokers and in their sixties. But Alexander didn’t smoke (hardly even
drank after an unfortunate incident at uni) and at only 22 was he going to die
as well? Die? He had only just started to live. He wasn’t going as well was he?
My mother had been in and out of hospitals for as long as I
can remember, so being in a hospital had never bothered me but now I was
bothered. I can remember my parents referring to the C word when another one of
their uncles or aunts passed away from cancer,” nicht in front of the kindela”
they would say in case hearing the word would bring on the disease.
But not Alexander this was 2011 he would be cured surely all
these thoughts passed through my mind in a matter of seconds then I could see
and hear my wife crying but I couldn’t comfort her. The rheumatologist came
over to me but I told her to take care of Laura be with her she needs you right
now, ( this was Dr Rapti Meddiwake we
all had a lot of faith in her (one day I predict her to be Professor
Meddiwake). She was tough, thorough and gentle we all liked her but Laura
needed her not me. Then there was my beautiful daughter Francesca at 23 she
shouldn’t have to be an only child I thought what I could do for her and her
tear filled face.
As usual when things are bad she came to me but what use was
I I’m not a magician, I can’t cure him.
This was still someone else’s family not mine. wake up wake
up its just a nightmare it’s not my Alexander its someone else’s, but would
that be fair why should someone else have all this pain.
I sent Francesca to Laura and said she needs you right now
not me. At least another 2 minutes had passed and I started thinking that Rosh Hashanah
was only a couple of hours away and we had to get home to light candles, make Kiddush
and go to Shul and then HORROR struck ………my parents how on earth was I going to
tell 2 eighty something’s that their only grandson had cancer the dreaded C
word had reared its ugly head again in their lives. Were they having to bury a
grandson as well???? Then more HORROR my beautiful darling wife who had already
buried 2 parents far too young had this to face, would she be burying a son as
well???
What would become of us our lives our family without our Zand?
How would we cope? What would we do every day without hearing or seeing his
beautiful face?
At least another 2 minutes had passed and another doctor had
been introduced to us by Dr Rapti, this was Dr Andres Virches a consultant haematologist
who was going to take care of him from now on. He briefed us on what he was
going to do. He was very compassionate in his approach, Rapti stayed for the
whole time sitting with Laura even the colour had gone from her face as well. She
seemed as sad as we did after all she had been treating Alexander for months
prior to this diagnosis.
She really was the one who had diagnosed the cancer, I felt
I still wanted her to treat him but this wasn’t her field we had to let go and
move on with Virches.
He continued blah blah blah chemo this, stem cell that, stem
cell the other, sperm donation what? He may as well have been talking Swahili
for all I understood. All I could see were the red tear filled eyes of
Francesca, Laura Rapti and Zand.
Zand who had been so strong for many months of treatment for
other prognosis had for the 1st time broke down himself he was so
frightened.
Again the thought of my parents came back. How do I tell
them, how can I tell them, this isn’t right someone should be telling ME they
have cancer. That’s the natural order of things; old people get sick and tell
their children not their only child telling them that their only grandson has
cancer. I can’t do this I can’t face them with this news but if not me who
else, Laura was distraught, it wasn’t for Francesca either it’s for me to do they are my parents I have
to tell them.
Alexander gave me the strength after all I had to be strong
for him (I had to be strong for everyone) after all he had never shown weakness
after everything he had been through prior to this day.
Maybe a couple of hours had passed and New Year was only an
hour away, we left the hospital I saw Mohammed (worked in Costa coffee) he
winked at me as I had become a regular there we got in the car and headed for
Edgware to tell my parents.
We arrived at their house Laura and Francesca stayed in the
car behind their sun glasses and Zand and I went in. We broke the news in that
positive who’s kidding who here tone of voice trying to reassure them that this
is “the cancer of choice” not a nasty one… you know good survival rates, proven
track record etc. Were they taken in by it ….were they heck, they too hid behind
a lying façade as we were trying to reassure us that treatment had gone such a
long way since their dads died and it would all be fine. Meanwhilst my poor dad
went white my mum wasn’t much better and in old age they now have this issue to
deal with. We had to get home New Year was only 20 minutes away.
I know I didn’t want to break the news to anyone before New
Year as it would be a bitter start not a sweet one but I had to tell The Rabbi
(he had a rough time a year earlier with oesophagus cancer and he wanted to
know the outcome). I felt really bad telling him prior to such an important day
but he had dealt with worse. he was the Rabbi, candles to light Synagogue to go
to just so much to think about….
Suddenly from nowhere friends arrived, trying to “comfort
us” I know they meant well but it was like a Shiva, my Zand wasn’t dead why
don’t they go home and leave us alone but stay they did. I know we lit candles
but I still cannot remember if I went to Shul that night or not it’s all blank.
Someone started to hug me why I thought to console me or
yourself, don’t feel sorry for me I have a mission and a job to do here you
will go home and continue as normal in the morning.
…why don’t you all go home leave us alone for tonight?
We had arranged for lunch on first day Rosh Hashanah at our
house. Should we have cancelled it hell no we
have to carry on life as normal (normal as it could be) even though Laura and I
were walking around like Zombies.
Second day I went to the early service at Immanuel College,
Laura didn’t want to go so I went by myself. She said the hospital may call for
Zand to go for sperm donation as he had to give 3 samples before the chemo
started (at least she was listening) and the chemo was starting the following
week and there is only 1 way to do that. Virches had said that the chemo would
probably make him sterile but at least by doing this he could father a child
one day.
I sat at IC in a daze just looking out the window not really
able to concentrate on much and then out of the corner of my eye I could see
Laura standing at the entrance to the room. She looked absolutely beautiful the
sun had just caught her face and with sunglasses and a 1950s style white dress
with black spots she looked like Audrey Hepburn, I went over to her and she
said the hospital called and we have to go right now. I said it was Yomtov and
Shabbat cant we go tomorrow???? But no they were expecting him and we would
have to go again twice more that week.
Poor Zand, he was mortified, we drove (what was to become a
familiar route to UCH) and hardly spoke a word to each other the whole journey.
The second time we laughed about it and the third time we were in hysterics.
Beat that for father and son bonding we just had to laugh after all what could
have been more embarrassing for him. The rest of that week just dragged on
until Yom Kippur.
The morning of Kol Nidrei, Francesca decided to create a
facebook page with a link to Chai’s Just giving charity page which could raise
a couple of hundred pounds before Yom Tov came in. Well… nearly £3000 was
raised by friends, family, odd bods – people that may only have ever said hello
to Zand in Leeds had all given. That evening we went to the IC to Kol Nidrei.
Zand and I sat together in IC – what a day that had been and
now a challenge to pray for forgiveness. I felt that I had already been
punished and so had Zand. Then I thought of the Rabbi; a more pious, righteous
and holy man there isn’t, why was he punished with his trauma? Yet he kept his
faith – so pray hard I did! The next morning again we sat together, we played a
game Alexander was babbling away in
German and I tried to answer much to the annoyance of the person in front – but
we had a good laugh! To be honest, from then until Christmas I have very little
recollection of events, dates, work, people, all I can remember is chemo, Barnet
General, Costa Coffee, chemo, Barnet and Costa, with the occasional visit to
UCH as a bonus….
I would normally consider myself to be a bit of an emotional
person but apart from feeling that my heart and soul had been ripped out of me
I hadn’t shed a tear. Then day 1 of chemo arrived, what was chemo? What did it
look like? We have all heard how many people are badly affected but what was
this life saver and how would it affect Alexander? My stomach that morning was
churning but I had to show no fear, after all, I wasn’t having chemotherapy –
Zand was and if I felt that badly, what was going on in his head? I wanted to
bless him so I got my book and started to recite the traditional Friday night
blessing over a son – you should be like Ephraim and Menashe. Then I broke
down. I burst into floods of tears, quivering like a jelly, but I had to finish
the blessing, which I did.
We then drove to Barnet General’s chemo lounge to start the
chop14 series of chemotherapy. I just couldn’t believe it, what was happening
to Zand? All the biopsies, scans, blood tests, misdiagnoses, different
hospitals and 8 different consultants and we were going for chemotherapy.
Surely this was a nightmare? I remember driving past Morrison’s thinking ‘wake
up! It’s just another dream!’ We arrived, now we had a blue badge! We used it
for the first time – no more expensive parking! We slowly made our way to
Mulberry Ward on the 3rd floor which was to become our temporary
home for many weeks.
We were warmly greeted by the wonderful chemo nurses. They
explained the procedure, made us a cup of tea, stuck in the needles and the
chemo flowed. Nothing prepares you in life for looking at your beautiful child
surrounded by a group of sick, bald people all having chemo for various types of
cancer. It became a bit like a club – we called it the chemo club. These zombie
looking people became like family. One tries to keep busy making tea for
everyone, eating chocolates (o boy did I eat chocolate!) and talking to others.
It really was more of a comfort and I found that I almost looked forward to
going. We were there so often I was on first name terms with Mohammed who knew
exactly how I liked my coffee in the Costa bar –having around 3 lattes every
visit. I remember Francesca visiting and Tash Biffers Silver but one person who
sticks out from the rest was Nick. He bought Zand an IPad but more importantly
– he never missed a chemo! Like clockwork he was there for all of us and he
never let us down.
People were so kind, even those we knew as acquaintances
cooked a meal, invited us for Friday night dinner, cooked a chicken but I
received a call from my cousin Beverly. I think might have seen her only 3 or 4
times in 30 years but she had heard Zand was going to have a stem cell
transplant and she kindly offered if she could be a donor. The gesture brought
a tear to my eye.
How did Laura feel
now? Susan could only do so much, after all she had cancer herself and now she
was watching her nephew. Francesca had been a tower of strength, back and forth
she went – work, hospital, home. She was hurting, but what could I do other
than love her? I had to give Zand the attention – he was so sick, she wasn’t!
Then Hashem sent a knight in shining armour to her rescue! Her superhero,
her Sir Galahad, it was Rafi! He met my bald, steroid-infused son but only saw
the inside, the outside did not matter to him.
Towards the end of the year my uncle died. I was really
upset, not that I really knew him but I was sad for what never was. He didn’t
really know me or Laura and now he would never know his great niece of great
nephew. My only blood family were his children and I felt I had to call Anthony
my cousin. I tracked him down and called him. We spoke for 20 minutes and he
was really pleased to hear from me even though we hadn’t seen each other for
the best part of 30 years. I hadn’t mentioned Zand to him at this point as he
was upset enough about losing his own father. I didn’t attend the Levoya or Shiva
as I didn’t feel it was appropriate. I got his mobile number and after he sat Shiva
we spoke again and this time I told him. We kept in touch by text. I felt a
sense of comfort that finally I had a blood cousin that I could talk to.
I have lost track of time again but by this point the chemo
had come and gone and despite hair loss, weight gain and tiredness Alexander
responded well and it must now be around Christmas time. We were then explained
the next steps. Zand didn’t have a regular lymphoma – he had a rare strain, so
a stem cell transplant and more chemo were needed. He was going to be an
Ambicare patient at UCH, which meant he and Laura (as a carer) would move into
The Grafton Hotel in Tottenham Court Road opposite the hospital where he would
attend daily as an outpatient to monitor his vitals in preparation for the
transplant.
It all got rather confusing as the chemotherapy was given
after his immune system had been shut down. We were counting down days before
he would have to be admitted as he became sicker. This was the start of the
scary part where Virches explained that there was a chance we might lose him
during this procedure. He had to keep as healthy as possible and constantly
supervised as his temperature could shoot up at any time and then he would need
admitting. They were waiting for him to become neutropenic – meaning having no
immune system. In between all this Laura
had caught a cold and had to leave the Grafton to come home and swap with me. I
stayed with him for 3 nights. By now he was getting weaker and the hospital
were saying just a few more days until he has to come in. all our friends
rallied round bringing us dinner, take away’s and particularly memorable Cohen meat
pie (which was Zand’s last meal before being admitted, he lived off it for
about 3 weeks!)
I can only remember 1 date which was February 23rd,
I was working at the IOD and Laura called me to say he was quite poorly and had
been admitted into UCH. I so wanted to be with them but I had to work but my
mind certainly wasn’t on the job. I remember driving home around midnight at
the cross roads of Euston Tower and UCH and I was really sad. My wife was in
the Grafton, my son was in the hospital and I was heading home to my daughter.
Zand was in a single room on the 16th floor with
fantastic views over the city, I can remember going there the next day and his
friend Dan Grabiner had turned up after making some excuse to his boss and
bringing with some awesome decorations of Chinese lanterns. We were pushing the
bed around the room with Alexander in it and he on it pumped to its maximum
height so he could stand on it to hang the lanterns. If there was an award for
the best decorated room we would have had it – thanks to Francesca and
Grabiner, the nurses were all very impressed!
His temperature fluctuated and he needed constant infusions
of antibiotics and platelets but on the whole he did well and made good
progress. We stayed over the Grafton for 3 Shabbats but on 1 Friday night I thought that was it. I
honestly thought his time was up. He collapsed into my arms.Yet again my insides
churned. Laura went into panic and screamed down the ward for help but he came
round with what seemed to be the entire ward’s nursing staff around him and a
wonderful doctor who sat on the floor with him. Eventually he returned to bed
and we left that night at 2am. The next morning as he had been so sick that
night we went in to see him early around 8.30. One day rolled into another, friends, family all
came and visited.
My car seemed to run on autopilot – it knew the route and
knew where to park but the recording of this horror story was coming to an end.
We were soon to leave the safe haven of UCH to go home. Zand had lost weight,
lost hair (again) but had immense courage and strength and through this gave us
all strength. We came home as a family. Alexander was exhausted, he slept most of the
days and we limited his visitors. Rafi, Tash and Les arranged for a Megillah
reading at home which was a beautiful evening was was for all of us. Alexander
had courses of injections, hospital visits and over the following 3 months his
strength returned and he went on a well deserved break to Israel with his
friends Dan, Joe and Esther. He returned from his holiday with shingles. What a
nightmare that was! Read his blog and that will tell you about that.
1 year later Alexander is back in Leeds University to
complete his degree, 1 year later Rafi asked if he could marry Francesca to
which of course – how could I refuse. Alexander remains my Atlas, my Thor, my
superhero and my strength. We and everyone who knows him are really inspired by
him and hope that he is a true
inspiration to all other young cancer victims.
Life will never be the same for some time to come, although
he is in remission this has cast a shadow over all of us and will take some
years to fade away, what will the future hold that’s anyone’s guess but I
don’t like to think too far ahead, all
is well at the moment. I now have to concentrate on Laura, Francesca, and now
Rafi. Also returning to enjoying my work as I feel over the last year it was
all a chore and I became very uninterested in the colour of a table cloth or a
flower position.
His blog tells you his side but this is mine. I coped
because he coped; Laura and I had strength because he did. Also I coped in my
way which was 1 day at a time and only now was important, not later, not
tomorrow. I am eternally grateful for those who helped us, to our friends and
family, our staff and of course to his doctors and nurses at UCH and Barnet
General, the ever caring Chai Cancer care, to those who prayed and ultimately
our eternal gratitude to the Almighty.
I would like to end with that blessing over him without
blubbing like a jelly this time.
May the Lord bless you and keep you, may he make his face to
shine upon you and gracious un to you.
May He lift up his countenance upon you and give you peace.
