Some GREAT news, an update and 4 year Cancerversary

Hi all!

I went back last week for my pre appointment blood test. Apart from being told off for putting my coffee cup on her table, it was rather unexciting and I hardly even felt the needle going in. Win.

As I turned up for my appointment to see the haematologist, for the first time in a very long time, I felt a bit nervous. I had no reason to. I hadn't felt any different to normal. Was a bit strange. I always request to see the same doctor every time as he knows me the best and was in charge of all my treatment. Half an hour after my scheduled appointment, he came out the office and announced that all those waiting to see him would be delayed. In my eyes, that only meant one thing. That either I, or someone else before me was receiving bad news and having an extended appointment. That made the nerves even greater.

An hour later after scheduled, he called my name. As I took a seat, we went through the usual questions, what I was up to at the moment, how I'd been feeling, any symptoms etc. He told me that my bloods were completely normal and was rather unremarkable as far as symptoms were concerned. He went on to explain, that because of the way I handled the chemo, the aggressive chemo and the transplant, that chances of reoccurrence fall due to having handled it relatively well. That was great news.

He also went on to say, that either from the next appointment, or the one after that, I could be completely discharged! This is the only context I ever like hearing the word Discharge. I couldn't have hoped to hear anything better! However, when he did say that, I did feel slightly sad at the fact I would never be back there. It has been such a major part of my life for the last four years, so if and when I eventually get discharged from his care, it will be very strange and the whole saga will officially be behind me!

Every year that has passed, I still can't get over the fact that all this happened to me. I still think a lot about everything that I went through, from diagnosis, treatment and now remission. The whole story still seems so surreal!

Next stage is to carry on as normal until I go back to see him again next Summer!

Pre Cancerversary Update

Hi all! My sincere apologies that it has taken me this long to update my blog. I can't think of a genuine excuse as to why, but I thought this would be a good time as I am now approaching four years post diagnosis!!

In my last post, it was the day before I was due to "go under the knife", used in the loosest possible way, to have the collagen cross linking procedure. As mentioned, it wasn't in order to fix my eyesight, which is what most laser surgery entails, but merely to prevent it from getting worse. On the day I was naturally quite nervous. Not as nervous as I had been for previous procedures, but a different kind of nervous. This was one of the first surgeries, where I would be wide awake. That was the scary part. When you have a general anaesthetic, you go into a room, are either gassed or have an IV anaesthetic and the next thing you know, you are awake again, completely clueless as to what has happened to you in the last couple of hours.

For this procedure, I was wide awake, talking to the surgeon as he was operating in my eye. My eye was taped open, which was very uncomfortable and I was given anaesthetic in the form of eye drops and as I lay there talking to the surgeon, I could smell burning. This was the laser in my eye, doing whatever it was meant to be doing. I wasn't expecting to be able to smell the burning and that was, of course, bizarre.

I can't really describe what the rest of the procedure was like without wanting to throw up a little. There was poking and prodding in my eye and the whole thing only lasted about 20 minutes! He put in a "bandage" contact lens which was meant to stay in for about 3 weeks but it came out after about a week after I rubbed my eye... I was sent home with a massive bag of eye drops, four different kinds which all did different things and obviously had to be put in at different times of the day for the next month. The first day was very uncomfortable and the light very sensitive, but after about 24 hours, it all settled and I carried on with the drops.

The surgeon had mentioned the potential for getting glasses, which didn't phase me. He did say wait a couple of months for it to heal, as it is a slow procedure. A couple of months later, I am now a full time glasses wearer, albeit mainly for my left eye.

My next haematology appointment is at the end of this month, so no doubt will have another update then! This one will hopefully not come 6 months late!

Until then... Peace Out!

Lasers and and update

Last week I went back from my 6 monthly check up with my haematologist. After waiting for over an hour to see him (which is quite short!) we got called in. I had had my blood test the week before which was quick and painless (thankfully!) He had a look at my results and was very happy. Last time I had tingling in my fingers which we put down to nerve damage in my arm from the way I lean on my desk at work, which was resolved with a cushion... If only everything had been that easy! We had our usual chats about any symptoms I may have had, which I didn't and he then had a feel around my neck and under my arms for any lumps. I was lump free! Always a relief! He went on to say how from then on, my appointments would then be annually, rather than 6 monthly. That was fantastic to hear! I will be going back in 10 months however, as my parents didn't want to wait that long... Not to worry!

That's all on the cancer and haematology front!

In previous blogs I've mentioned my eyes and the condition which they discovered post shingles, Keretaconus. Very easy to remember this one as it is pronounced like everyone's favourite member of Atomic Kitten and Queen of Iceland adverts, Kerry Katona. This is where the cornea is changing shape and is causing blurred vision in my left eye. They will be fixing this tomorrow at Moorfields Eye Hospital in London with a procedure called Collagen Cross linking with Laser PTK. I've been telling people it's sort of like laser eye surgery (as there is a laser involved) except it is a condition that can't be fixed, but only prevented from getting worse. It is surgery and there will be eye drop anaesthetic, bright lights and a load of other fun things... The doctor said it will be very uncomfortable afterwards and I'm likely to be very sensitive to the light. Thank god they're only doing it in one eye!

I've been asked numerous times whether I'm nervous or scared. And to be honest. I'm not. Having been through everything I've been through, this doesn't seem anywhere near as scary in comparison! For one, there'll be no needles! Which in my eyes (pun) is always a winner! A bone marrow aspiration with a 12 inch needle in my hip, chemo and a stem cell transplant can't really be trumped in terms of scary procedures! The fact that I hopefully won't go blind is also a plus!

The eye surgery is scheduled for tomorrow, so I'll update again soon, albeit through my good eye :)

3 years post diagnosis and eyes

Today is the day! Three years ago exactly since I heard those dreaded words and my life changed forever. Although 3 years seems like quite a long time ago, everything that happened is still so clear and vivid in my mind. I still look back and can't believe that it all happened. The 6 months of uncertainty and not feeling like I had control of my life leading up to diagnosis day were terrifying. You know something is wrong. You just don't know what it is or how this will effect your life. The fact it took so long to diagnose was the hardest stage. Hearing the conclusion gives you a reason and hearing about the treatment and battling through it is the solution.

Three years on I've learnt so much about myself and have become a better person because of it. Seeing death's door makes you realise how important it is to take advantage of everything the world has to offer. Yes there may be some blips or hiccups along the way, but life is short and you can't take it for granted. I know I had it relatively easy in comparison to some people going through cancer treatment and there are occasional feelings of guilt.I know there shouldn't be because everyone responds so differently to their own treatment, but these feelings are unavoidable.

Now for an update... A few weeks ago I went back to the Eye Consultant at Moorefields, who last year had told me to come back in year just to see if things had changed. After lots of tests and eye drops, he concluded that the Keratoconus in my left eye had worsened since the last appointment as had the vision in my right eye and he recommended I see another specialist who performs the treatment used to prevent it from getting any worse. That appointment is next week, so I will update again then. The treatment is called Collagen Cross-Linking and involves lots of special eye drops and bright lights... Something to look forward to! After the appointment I felt very dizzy and light headed and thought I was going to throw up because all the eye drops had distorted my vision and made the light seem very sensitive.I did, luckily, manage to make it back to work in one piece!

Pins and Needles and update!

Hi all!

Sorry it's been a while since my last post! Been very busy but have now sat down to write!
Here's a quick medical update...
About two months ago, I noticed a tingle in my left hand. Not thinking anything of it, I naturally ignored it. I noticed that it was still there, some days, then some weeks later. It felt like post pins and needles, where you get to the numb stage when it is coming to an end... Weird huh?

I asked a couple of people their thoughts and didn't really get anything. I eventually got an appointment at the GP. She knew my medical past and she said that the most likely cause is bruising to the nerve from when I lean on my elbow at work, which is sending tingles to my hand. Being over cautious, so also wanted to send me for a blood test to rule out other potential options. I tried to book one and, of course, it was a really long wait, and I would be seeing my haematologist before I could get a blood test at the GP.

I took the new blood form, along with my normal one to my pre consultation blood test. After some initial confusion from the phlebotomist, she took my blood, filling up 6 test tubes. The blood test felt more painful than normal. I felt very brave.

A week later, I was back in the waiting room, the same waiting room we waiting nearly 3 years ago to find out the dreaded news. The clinic was heaving. I always ask to see my doctor, rather than one of the other doctors in the clinic. He knows me very well. After an hour and a half delay (which is quite short in comparison to past appointments) I was eventually called in and the nerves kicked in. In the past, apart from when I was initially diagnosed, I had felt a bit nervous! Perhaps because of the results of the extra blood test... Who knows?!

It had been 6 months since my last appointment with my consultant and we had a short catch up. He informed me that all my bloods looked good and questioned why I had all the extra tests when he hadn't requested them. I explained the numb feeling in my hand and he assured me that it was nothing to do with the cancer or the treatment. He agreed with the GP that it was likely some sort of nerve damage from the way I lean on my desk at work. He suggested straightening out my arm and not leaning on my elbow... I shall try, but it's very comfy that way! If it persisted, he suggested getting referred to a neurologist. After that, he had his normal feel around for lumps around my neck, under-arms and groin. He couldn't feel anything, which is always a relief!

He was happy! At the next appointment, which is now 6 months away, I will be almost 3 years post transplant. Assuming nothing crops up, from then on my appointments will be annual, as apposed to every 6 months. That was the best news I could have hoped for! Full of relief, I headed back to work!

Update and 2 years post transplant

In January I had a follow up appointment with my hematologist. After the blood test the week before, which was quite painful in comparison to normal, we were back in that same familiar waiting room. We were eventually called in and for the first time I was quite nervous. I have no idea why! We had the usual chat about what I was up to, whether I'd felt any symptoms etc. He was more than happy with my blood levels and he explained that they were at the levels for any normal person. Me? Normal? There's a first! He also had a feel around for lumps around my neck, stomach, under arms and groin and he couldn't find any, so that was a relief too! He also explained that now I was 2 years post transplant, the chances of it coming back were far less in this period in comparison to the 2 years straight after. That was also really great news! He now wants to see me every 6 months rather than 3, so that was the best news I could have hoped for!

Last week I also had a follow up with my rheumatologist, who I hadn't seen for at least 6 months. Despite her having been the original doctor who diagnosed me, I still enjoy going to see her. She was more then happy to sign me off and was delighted with the progress I had made. However, we rejected her offer, just in case because it is so much harder to get back into the system once you have been signed off.

This week was two years to the day since my transplant began. The transplant consisted of the removal of my stem cells then 5 days of high dose chemotherapy whilst staying in a hotel opposite the hospital until my immune system broke down, meaning I'd have to be admitted to hospital. I can still remember each day and each chemo session so clearly that it still bewilders me that it was 2 years ago!

Two years post diagnosis!!

This is the second attempt at writing this blog post, as I managed to accidentally delete the other...

Last weekend it was exactly two years to the day I heard those dreaded words. The feelings on the day were somewhat bizarre. Although it should have naturally been a day of celebration, I sometimes can't help feeling a bit guilty as obviously not everyones cancer journeys end the same way. No one should ever have to be in the situation where they are told, point blank, that something horrible, dangerous, evil and probably life threatening may prevent them from achieving their dreams. Their aspirations. Things they've wanted from a child. Having now been through everything that I went through and come out the other end, life should now seem easy in comparison, hopefully! Although it was two years ago, it has gone so quickly. I remember so clearly everything that happened on the day. Getting the train back from Leeds, waiting in the waiting room to be called in, having my blood pressure checked and being told my pulse was quite high, being called in and then being given the news. All the actions and emotions are still so bold in my head, it is hard to get over. I genuinely can't believe that it was two years ago!

A few weeks ago, I had an appointment to see my haematologist. He mentioned that it was 18 months since my transplant. My dad and I both looked at eachother in amazement as we couldn't believe how long it had been! We had our usual chat, he said my bloods were looking good and I also mentioned to him, something that I hadn't mentioned to my parents, that I kept feeling a recurring pain in my armpits. He had a thorough feel around, but couldn't feel anything. That was lucky! I had also mentioned it to my rheumatologist who I had seen a few weeks previous and she believed it to be muscle folds and nothing I should be concerned about.

Other good news which came from that appointment, was that after my next appointment which will be in January, I no longer need to go every 3 months, but every 6 months :)  That was great to hear, as the less concerned about me he is, the better.

My sisters Wedding

My sister got engaged in September and I had been counting down the days to the wedding ever since. I first met Rafi (her new husband) just after my treatment began. I was totally bald having already had two or three rounds of chemo, pale and not really looking my finest. You know when you meet someone at the worst time in your life and they stick around? That was Rafi. I knew from that moment, that Rafi was going to be around for a while and noch, he is now my brother in law! You couldn't ask for a finer one if you ask me! Totally selfless, genuine and a real hero. He was there not only for my sister to cope with everything she was going through, but also myself. We had only met a couple of times, but when I was in hospital, he came up most days and even bought presents. What more could you ask for in a brother in law?

The wedding was out of this world. I knew that at some point I was going to cry. I'm just that sort of person. I had originally predicted that it would be as my sister walked down the aisle. I was so wrong. It was about 45 minutes before hand. When we escorted Rafi to greet Francesca, who he hadn't seen or spoken to for a whole week beforehand, his tension and emotion was transferrerd straight into me and thus came the first set of tears! And plenty of them! I blubbered like a baby. During the ceremeony, I managed to retain most of my composure until the last song, cue more tears Once the ceremony finished, I saw my dad. Also blubbering like a baby (it must be genetic), I cried again!

I think one of the main reasons, apart from it obviously being a beautiful wedding and a naturally emotional occasion when your only sisters gets married, that there were so many tears, it actually sunk in, that I so easily could have missed the whole thing, had treatment etc not gone my way. I was very lucky and felt so blessed to have shared and been a part of their special day.

I am due to see my haematologist again next week for my quarterly check up, so will update again next week!

Peace.

Graduation

Last week I FINALLY graduated from the University of Leeds. After 5 long years, the day had finally arrived! I was very excited to finally finish my studies and it was a big day for my family. My parents, grandparents, sister and girl friend all schlepped up to Leeds to watch.

I knew it would be a very emotional day, especially for my parents. My mum started crying when we picked up the tickets and apparently bawled the whole way through the ceremony, especially during the whole 5 seconds I was on the stage collecting my certificate. I know my parents thought I would never actually get to this stage and during my treatment and recovery, I was considering not going back, or possibly transferring to a London university as I thought going back to Leeds, after having taken my year abroad and another year off being ill would be weird.

For various resons, transferring to London didn't work out and so, at the time, I begrudgingly went back to Leeds. This however turned out to be the greatest decision I could have made. I knew that I wanted to complete my degree, having already undertaken 3 years, but I was aware that going back would be very difficult, having not had a formal routine for 2 years. No essays, revision etc.

There were a couple of times throughout my illness where I thought I would never actually even get back to university, let alone complete my degree and graduate. Black Friday was a prime example of this, passing out whilst in hospital as part of my transplant, collapsing in a heap on the floor whilst an emergency medical team had to be called out to resusitate me and again when I was rushed into hospital with excruciating headaches and vommiting and being diagnosed with shingles after the doctors having ruled out meningitis, a stroke and brain tumours. These were all extremely scary moments for not only myself, but my family, emphasising the importance and relief graduation meant to us all.

I am due to see my haematologist again early Semptember, so will update again then, if not before!

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 1^st 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 3^rd 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 23^rd, 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 16^th 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.

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!

Update

Hi Everyone! Sorry it's been so long since my last post, but here is a quick update on the situation! A few weeks ago during the holidays I had my one year post transplant appointment with the haematologist. I still can't believe that it was a year ago! Bloods were fine and he said come back again in 3 months! A rather unremarkable (in a good way!) appointment! He wasn't concerned in the slightest which is always a nice feeling! My parents still worry every time we go to see him and get a bit nervous, but I always say to them, that we've heard the worst thing, so everything else is always a positive!

I also had a follow up appointment with the rheumatologist, who I hadn't seen for a while and it was a bit weird being back in the same place where I was diagnosed.  It always freaks me a out a little bit! She was happy to see me and was happy with my progress and wasn't concerned with my muscles after doing a few checks. A couple of days before we saw her, my arms started to itch and they were very hot. She had a look at them and wanted me to go back to the dermatologist as she wasn't sure whether it was just foliculitis which is very common or the start of the dermatomyositis rash again and wrote an urgent referral for me to be seen by my dermatologist asap.

A few nervous days of waiting, I managed to get an appointment with her, because she had had a cancellation. She was also happy with my progress as I hadn't seen her since the shingles debarkle... She had a look at my arms and they weren't as hot as they had been in the previous few days. She explained that due to all the chemo and the original dermatomyositis, my skin is a lot more sensitive then it would have been beforehand and that it was only a form of eczema and nothing to worry about and that it is a common symptom post chemotherapy. PHEW! That was the best news I could have asked for, as I really didn't want to have to start the whole thing again!

I am due to go back to the eye doctor soon, so will update again then!

Transplant- one year on!

I genuinely can't believe, that this time last year I was having my stem cell transplant. So far the transplant has worked, so it wasn't totally in vain! The first couple of days, whilst I was undergoing the extra, more intense chemo, I was staying in a hotel opposite the hospital as I still had part of my immune system, despite having had my stem cells removed. After the five rounds of intense chemo, I was given the stem cells back and had to wait for my immune system to literally break down before being admitted into hospital, due to fears of me catching a further illness and not being able to fight it off.

I was semi-isolated for 10 days, luckily I was still allowed visitors and I want to again extend my grattitude to all those who trecked up to town to come see me. Whilst in hospital, I was having daily check ups etc and my blood levels, pressure and temperature were being constantly checked to make sure I didn't catch anything. My temperature and blood pressure were constantly fluctuating and I was put on regular fluid drips, given lots of antibiotics and had three platelet infusions. One night stands out to me in particular and I know my parents as well. It was a Friday and my parents were staying in the hotel opposite for Shabbat. I had already been sick during the day and hadn't been feeling great. Later on in the evening, I went to the toilet and I felt a bit light headed. I came out and all I recall is my mum shouting from the other side of the room "catch him" to my dad as I collapsed in his arms.

Next thing I know, about ten nurses are running around my room, I am sprawled out on the floor laying on the doctor and I saw the relief on my parents faces as I started to come around. I now like to think of this day as Black Friday. After hearing what had happened and why, I was certain my time had come. My parents thought so too and almost a year to the day later when this happened, it still plays on my mind.

This blog was just to share a quick thought as to what had happened this time last year. At the moment I am in good health and due to see the haematologist on my return home from university during the Easter holidays, so I will update again then!

 

Eyes and a small favour

So I went to see a new eye consultant for a second opinion at a specialist eye hospital. I was called in by a very nice, Greek optometrist who took all the vision tests, scans etc. She put in eye drops which was a mission in itself as I couldn't stop blinking. She even said, "oooh, we have a blinker here!" which didn't help much. She eventually got them in and I went back to the waiting room to await the doctor.

He eventually called us in and I think "posh twat" would be quite an accurate description. He didn't bring much to the table, he looked through the scans and had a check of my eyes through another machine. He said that I do have keratoconus in my left eye, but was a number 1 on the seriousness scale. He said to come back in 6 months for a re-scan. And that was it. Quite different from the last doctor, who said it was quite urgent and wanted to start a procedure almost instantly! So I will go back to him then, if I haven't noticed any obvious differences in my vision.

Now a small favour.

My future brother-in-law will be running the London Marathon next year and is raising money for an incredible charity. Chai Cancer Care. They work with not only cancer patients, but their families, to help them cope with a cancer diagnosis. They were, and still are amazing to both me and my family. If you could sponsor him to raise money for this cause, it would be very much appreciated!

Here is the link:

http://www.forchai.org/rafisaltman

And here is the video again of the speech I made, high lighting why Chai is such a worthwhile cause:

http://www.youtube.com/watch?v=Lk4oaRZvpv8

An update and good news

Hello everyone! Sorry I have not written for a while, but here is the latest update!

Today I went to see my haematologist as a routine quarterly appointment. After waiting an hour and a half to see him (this isn't the longest I've had to wait for an appointment), I was called in to see him. I'd been sent for a blood test upon arrival, and luckily the phlebotomist got the needle in first time, so things started off well! He asked how I'd been, back at university etc. He looked at the results from my blood test and was really happy, saying things weren't only normal, but good! WOOOO!!

We started talking about the medication that I was still taking post shingles. These were anti-viral and he said I could stop taking them from now. This is the first time in 18 months where I've been on no pills or medication, so this felt like a great relief! After all the talking, he took me into a side room, to have a feel around for any potential raised lumps or lymph nodes. Always awkward in these sorts of situations, I started laughing when he was prodding under my arms. I'm not even ticklish. At least, I didn't think I was! After the awkward prodding and feeling around my neck, under arms and stomach, he said everything seemed fine! He wants to see me again in 3 months time!

That was the best I could have asked for to be honest! Tomorrow I am going for a second opinion to a specialist eye hospital about the blurred vision in my left eye. I will update my blog again later on in the week with the news from this.

Video

This is a video of the speech I made in May, speaking about my experiences of cancer and Chai Cancer Care.

http://www.youtube.com/watch?v=Lk4oaRZvpv8

Exactly one year to the day since diagnosis (and an update)

It didn't occur to me until around 11am, that this day, exactly one year ago, I heard the dreaded words that no-one ever wants to, or should hear. When I realised, I came over all funny and didn't really know what to think or say. I remember being on the train back from Leeds to London this day last year and just thinking, what could it be? I had been through so much investigative work to that point, that I thought things could only get worse. And noch, they did.

And one year on, on a more positive note, I lived to tell the tale and again want to thank everyone who was there for me and my family throughout this very difficult year. I am now back to almost full health. I have a full head of hair (even had a haircut!) and have returned to university to complete my studies. My sister also just got engaged this week, so I am naturally delighted and ecstatic!

I saw my haematologist last week before returning and he was happy with my progress. He said that the shingles blip was most likely due to being a little bit immuno suppressed, but was happy with my recovery and said my bloods were normal :)

Erev Rosh Hashanah- One year on from diagnosis

Erev Rosh Hashanah 2011, the world as I knew it changed. Being diagnosed with cancer last year was one of the most challenging things I have ever experienced. So one year on post diagnosis, I just wanted to share a few thoughts and feelings.

This year has taught me so many things, that I don't think I'd of known had I not gone through everything that I went through this year. The main thing it has taught me is positivity. In times of trouble and sorrow, I believe that positivity is vital and I know that staying positive has helped make my cancer experience easier to cope with. I have also really learnt to appreciate everything I have as it can so easily be taken away from you. Live life to the full.

To all my family and friends who have been there for me over the last 12 months, I thank you all from the bottom of my heart. To all those who visited me in hospital either for chemotherapy, my transplant or shingles, those who stood by me when my hair fell out and when I lost my eye-brows and eye-lashes, everyone who wished me well, everyone who mentioned me in their prayers (I appologise for my Hebrew name...), those who messaged, sent cards and those who just had me in their thoughts. Thank you. May this new year bring you all you ever wanted and more.

On a less cheesey note, I have two appointments next week. One with my haematologist and another with the eye specialist, I will update again in due course.

When I thought things were improving...

This week I have had two appointments with different opthamologists. The first one was seriously delayed and by the time I got home, had taken nearly 3 hours, of only which 10 minutes I was with the doctor. Fab. Although it wasn't the doctor I saw last time, she said from my notes and after a good examination of my eye, she said it looked better, but to carry on with the steroid eye drops and come back in a couple of weeks. Bound to if I have to wait 3 hours each time.

After this consultation, it was decided that my next appointment with an opthamologist would be private, merely for the continuity, that you see the same specialist each time, which with eyes is important. We managed to get an appointment a couple of days later with a new opthamologist, although he was also running late, it wasn't as late...

Before I saw the consultant, I had to see optomotrist (optician), he checked my vision and the pressure in my eyes. He noticed that the sight in my right eye was far better than in my left eye, and that when my right eye was covered, the vision in my left eye was quite blurry. He took some very specialised photographs using a really cool machine and he passed on all his findings and the photographs to the consultant for analysis.

I was shortly called into the consultant who was very friendly and calm. He'd read my long, complicated back-log of medical history and immediately started to examine my eyes thoroughly using all sorts of machines and lights. He said he had good news, that in regards to the shingles, my eyes were completely clear. He then said the dreaded word. But. At which point I knew something bad was going to follow...

In my left eye (the one not affected by the shingles) I had something called Keratoconus. This basically means that my cornea has changed shape, therefore affecting the vision and explaining the blurred vision in my left eye. Here is a website to explain it more clearly...http://www.eyesite.org/cornea-and-eye-surface/keratoconus-2/ We asked if it was anything to do with the cancer and shingles and he said that this was completely unrelated. I could have been born with it or it could have developed later on.

He didn't want to do anything yet until I had finished all the steroid eye drops that I am currently taking. I am due to see him again in a couple of weeks where I'm sure he will discuss further what's going to happen.

In the mean-time, today I'm going to the optician for a further eye test for further eye analysis, I will keep you posted.

Postherpetic neuralgia

I went back to the dermatologist last week and her diagnosis was confirmed. The first thing she said to me upon entering the consultation room was "have you got good news for me?" the answer was unfortunately, no. My skin was still really itchy and sore despite the steroids. This then confirmed her original thought, that I had nerve damage, due to the shingles. This is called Postherpetic Neuralgia.

We asked about the injection that she mentioned last time, but she said she'd had no luck getting hold of it as it is normally used as a last resort. Instead she gave me an extra dose of steroids and increased the amount of nerve pain killers that I was already taking. She also suggested a cream that I could use. She did warn me, that it may make my face feel like it was on fire. It did. The instructions were really strict on the cream, that you had to apply it really sparingly and make sure to wash your hands after application. That night I couldn't sleep as it felt like someone had set my face alight. I was sat on the floor in my bedroom with the electric fan blowing on my face and then a freezing cold flannel. I assume I eventually got to sleep and decided that I couldn't handle the cream and preferred the itching...

When I asked how long she expected the symptoms to last for, she said, because I'm young 3-6 months. That wasn't the answer I was expecting or wanted, but there's nothing I can do! I will therefore continue to scratch and hope for the best!