Sunday, 16 June 2013

Father's perspective



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 fa├žade 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.








Thursday, 13 June 2013

Another blip and an update on my eyes

I went back to the second opthamologist this week. I had all the usual scans, photos, drops and vision tests then waited to be called in by the doctor. He welcomed me back and confirmed that my vision hadn't changed in the last six months since I saw him last and, if anything, it had somewhat improved! He said to come back in a year and didn't seem overly concerned about the keratoconus! That was a relief! As the potential treatment sounded a bit nasty.

I also had to go in to the GP for some vaccinations, the ones you have as a baby, as post chemo, the majority of them get wiped out, so I naturally had to have them again. I had two jabs in one arm and one in the other. A day or two after I felt ok, then my arm began to ache to the point where I couldn't move it (the arm I had the two jabs in). A huge red mark had also appeared, the size of a tennis ball. It was a really deep red and boiling hot to the touch.I also had flu like symptoms, a cold and phlegmy cough. At one point, I also had a temperature of 39.9, which is really high!!

I went straight back to the GP and they saw me straight away. She said it could either be an infection (the lesser likely of the two options) or an allergic reaction to something I had been injected with, but was difficult to tell which. She put me on a heavy prescription of anti biotics. She wanted to originally give me penicillin, but since the transplant, it is unknown whether or not I am allergic to it, so gave me the next best thing, as she didn't want to risk giving me penicillin just in case. The symptoms lasted about a week and we drew a mark around the original red mark, so we could see if it was spreading. It did spread quite rapidly down my arm, the temperature remaining quite hot.

A week or so later, I also had a follow up appointment with the haematologist. My normal doctor wasn't there, so I saw one of the other consultants, who I hadn't seen since just after I was diagnosed. She was quite concerned with what had happened re the injections and wanted to speak to the transplant team at UCH before I had the next set of injections as she was convinced it was an allergic reaction rather then an infection She said my bloods were looking good and to carry on with the anti biotics. She also had a poke around under my arms, neck, stomach etc to find any lumps, which she didn't, which was a relief! Back again in 3 months time!