Arif Khan's Blog

What a difference a year makes..

At this stage last year i was under going radiotherapy. Although it was still a form of treatment, and i was still of work, i remember i felt better each passing day. The chemotherapy drugs form a full assault on the body. The last Chemo treatment was on December 22nd and by the end of January i was truly over the chemotherapy side effects - the short term ones anyway. The radiotherapy had little effect compared to the chemo - i had sore skin at the stop of radiotherapy and the skin did break also - but after chemo this felt like absolutely nothing.

I felt more sleepy and was told this was common - i remember feeling sleepy a lot of the time. Other than that i was trying to build myself up for the months ahead.

As i neared the end of treatment i realised that i was going to have to try and go back to my previous lifestyle. That involved quite a few responsibilities and projects and tasks to manage. Work was a definite concern. I had only been in the job 4 months when i got my diagnosis and only 2 months of that had been in the team i was currently in.

What would going back to work be like? Would people treat me differently? What would be expected of me? How long would it take my hair to grow back? What would my energy levels be like with the commute to and from work? Would i be able to focus on work?

A year on now all of those anxieties and worries are water under the bridge.

It was hard getting back to all those things - there was a lot going on - it was difficult focusing on work at times. I needed to come back to work slowly, on reduced hours and days to start with. At times i needed to talk / email / post on forums about how i was feeling - my experiences - how i had found things.

Friends and family are just as important in this period as they were during treatment.

To anyone who is facing a return to work - or is trying to get things back in order following treatment i would say two things.

1. It gets easier with time. Don't expect things to be as they were before right away. A year down the line i think now i feel settled again at work. It comes slowly. Also you are a different person now - don't worry about that, but embrace it and view it as a positive.

2. Use that support network. After treatment is complete there's fewer hospital trips, fewer blood tests, fewer drugs to take - its less obvious to those around you that you are still going through this experience. Take whatever help is available to you and see your friends and family as often as you can

1 Year on Since Diagnosis

Saturday the 16th of August was an ordinary day. The sun was out - it was not really warm - but not cold either. I remember i had a meeting at the mosque with one of the graphic designers from the web site team i manager for MKA UK. As i was leaving i saw one of my uncles was over. I met him, talked to him for a while about how things were, and then went to the mosque. I got back from my meeting with lots of ideas and things to look in to.

I spent the afternoon in my brother's room as he was in my room watching a football game. I worked on some designs for the Tomb of Jesus Website and other sites. Pretty much business as usual.

But it was a significant day at the same time. The same day the previous year id been in hospital, having had an infection in my biopsy wound, and had been ready to return home when i got some news from the Haemotology consultant that i was not expecting nor prepared for in anyway.

"We have the results from the biopsy. We'll be treating you with a combination of chemotherapy and radiotherapy."

A million thoughts went through my head. All i could manage to actually say at that point was "Really?"

To which i got "Yes.." and he carried on with the details about what ABVD was and the length of treatment. Nothing about prognosis, nothing about cure rates, nothing about side effects. I was told to stay in hospital to have some more tests and that things would begin ASAP. In addition i was told the following day one of the nurses from the haemotology clinic that give the drugs will be over to talk about things.

Then the consultant left, as he was in a rush as he was going on holiday.

What do you do next? Firstly you take a deep breath! After that i went out to get some air and then called the family. What do you say? One thing that is perhaps hard for others to understand is how bad it is giving someone bad news. Its never nice to make someone sad, but when you know they are being made sad because of you there is some guilt there. It sounds crazy - but you do feel it - its like you are placing an emotional burden on someone. Having said that i know the family would want to know immediately. I spoke to my dad - anyone who knows him will know he is calm about pretty much everything - he heard what i had said - said that it sounded like it was a malignancy and that they would be over later that day.

What a 12 months its been. Life is different now in every possible sense - and all in positive ways. I'm not saying that going through what i have has been a positive experience - what i am saying is that where i stand right now is a far better place than where i stood this time last year.

There is a lot to be greatful in all aspects of my life. The past 12 months have lead to an upheavel of patterns of normal life and thinking - and have taken me mentally, emotional, physically, and spiritually to places i've not been before.

I want to talk about my health at the moment. I am still feeling fine and thinking less and less about cancer. I have an appointment in a few weeks as a general check up and will have some blood tests and a general examination. Relapses do occur, i know people who have relapsed and know of those that have died due to lymphoma - but the longer things stay clear the better the chances that this illness has actually being cured. As well as hearing of those who have relapsed, there are those who have been clear for 30 years or more.

Its been a journey - and i know it will continue to be.

Lastly I'll rip off the words of Delta Goodrem again - who also had hodgkin's lyphoma and went through chemo and radiotherapy too. In her song 'Extraordinary Day' in which she talks about the day she got her diagnosis she says:

"I know, I can't change fate of that July the 8th and it was never the same
I know, this stage is frightening but its oh so enlightening is this how karma goes"

Busy Weekend

Busy weekend this week - on Saturday in particular i was rushing around between venues and carrying things and running round a fair bit - and Sunday was pretty busy too after an initial break during the day.

Pre-chemo etc that would have been a typical weekend for me and i was quite used to it. It was nice to get through this weekend, being that busy made things feel like they used to in ways too - yet i did feel the strain of the extra activity for sure.

Saturday afternoon i was setting up an exhibition for a peace conference at the mosque and that meant i had to carry some tables and display boards myself - after completing that and driving home i did feel out of breath and some chest discomfort for a few seconds too.

Its hard to know if its a chemo thing or just general fitness levels having not done much exercise for months! Good news is that the rest of the day was fine and Sunday was fine too - and this was refelected in my bowling score of 111 in the first round we had on Sunday - lets not talk about the 2nd game!

Next weekend is likely to be busy too - mixed feelings about that - good being busy like i'm used to, but maybe i should be taking things easy after adding extra days with the come back to work thing too?

The Post-Cancer Life - March '08

Let's start with an extract from a guy writing a book about lymphoma - excuse the language!

"I'm currently in remission, but thanks to Cancer being a f'ing headache before and during, it keeps on f'ing you for the rest of your life. It's like being an alcoholic. Even if you're not drinking, you are still an alcoholic. Just recovering. Same with cancer. I'm a recovering cancerholic.

Imagine me in a room and introducing myself:

Me: I'm Matt and my cancer is in remission.
Group: Hi, Matt!"

That is put so well! I was a Stage 1A and cure rates are up close to 100% - yet its something that does not just go away - even if the disease does.

I will have follow up tests for the next two years at least. A close fellow hodge survivor friend of mine will have tests for 5 years through being part of a study. FIVE years. Long time.

Practically you can be of full health and completely cured, yet it will be there for years. That means it will be part of your life for many years.

I have my first follow-up appointment with Dr A on the 8th of April. Its been 3 months since the last clean PET scan - its gone quite quick.

So what is the answer to dealing with this? It would appear that the answer is to put it out of your mind and just carry on your life as normal. But you know what - i think that is dangerous also. There are times when you want to talk about anything BUT the illness, yet others when you want to talk about NOTHING but the illness - for a short time at least.

Looks like i'm going to be a challenge for my friends / family for the next few years still!

Worth thinking about!

Newquay 2008 - Pre-Work Holiday

Wanted to share some of the photos from the trip:

   

The Return to Work

Tomorrow morning i'll be going in to the offices at work for the first time in almost 6 months.

I completed the last few bits of my preparation today by getting a haircut! I had had a tip from my brother that the barber was a Tottenham fan so we had a good chat about the final and Spurs chances in Europe. Main reason for the haircut was to get my hair more even now and a bit neater, ready for the corporate environment!

Following my meeting tomorrow with Occupational Health and the Critical Health Solutions teams i hope to return home, collect my car from the garage [where its having a new radiator fitted] and THEN drive up to Cornwall to spend a couple days with Naeem + his family. Hope to be up there till around Friday afternoon then head back.

I think its likely to be the last chance i have for a bit of a break before i'm back at work again - although i've realised that if you work 3 days a week - which i will be starting back on - you have more days OFF than you do ON at work in a week! Doesnt sound too bad at all....

So what now?

With the treatments coming to an end the 'So what now?' question is one that is on my mind as well as many others too such as family and friends and people read this i'm sure.

The current medical opinion is that the lymphoma has gone and been successfully treated.

I recently got to see all my medical notes recently and read a letter from my consultant to the radiotherapist very early on. In his words following the first treatment i had shown 'a full respnose'. Since about September then i've felt 'on the road to recovery'.

Now the treatments are complete i can start getting back to work and getting a normal routine going.

Having said that for the first year at least - possibly 2 years - i will be having full PET/CT scans every 3 months. The first one will be around 3 months from now - so mid May. This is to look for any possible signs of relapse.

Is relapse common? If it does occur is the treatment the same?

These are some of the questions ive been researching over the months. Given my age and the staging of the lymphoma its all in my favour and 95% of people in that group are fully cured with no return of the disease 5 years on - so signs are good - but having said that people do relapse. It can happen and it does happen.

As i've only had 4 cycles of ABVD if a relapse does occur i can have some more of these. The maximum number they give is about 8 - as after 8 cycles of ABVD you reach the maximum allowed lifetime dose of some medication! Crazy - but true.

If a patient relapses or is in advanced stage then its common to see people have an SCT performed. This is a Stem Cell Transplant previously known as a bone marrow transplant. Very high dosage chemo drugs are given - usually ICE - in an attempt to destroy the bone marrow and then this is followed up with the SCT procedure. If you reach this stage in treatment the chances of recovery etc drop to around 60%.

So thats the worst case scenario so to speak - maybe i'll be deemed a pesimist or acting in a 'negative' manner for reading up on / posting that stuff, but im definately the type of person that likes to be informed as possible and know exactly the the implications of things will be.

Realistically - purely going by odds and medical opinion and reports - i should, God willing, be fine for the forseeable future. What will be more of an 'issue' for me will be any long term side effects from the treatment. There's all sorts. I definately had chest pains during the chemo and i personally feel my lung capacity has dropped a bit - so how would i go with hard physical exercise? I'm curious! Even just going in to work daily - how would i cope with that - and the mental stresses of work in an investment bank?

2008 also promises to be a very busy and historic year for quite a few reasons - so there'll be plenty of challenges ahead.

26th Bday - February 1st/2nd

The signifance of birthdays dies down very quickly after 21! Try finding a 'Happy 22nd Bday' card for instance! Yet this year it was a significant day due to all that has gone on in this 25th year of mine. There's a lot that has. Far more than just the illness, or getting on the property ladder - its been a defining year in my life for sure. All sorts of things.

Coming out of it the otherside has has been hard work and i definately feel a different person to who i was this time last year. The end of my treatment is very close and with the positive news on the PET/CT scan front it was definately call for a celebration!

Friday evening was with the family, we had a meal (KFC + some cakes! Bday Arif-style!) and lib took some good photos and then i went for a walk with my dad in the evening.

Saturday evening was a 'pizza and playstation' evening where i invited round some friends - i think the evening was a definite success! Three of the guests didnt leave till after 3am - so id say it went down well. Also it was an excuse for some more filming - so expect to see a bday video up here soon!

Its been a very positive 48 hours or so - 10 more treatments to go on the radiotherapy front too then that will hopefully be that.

Getting back in to a regular routine will be interesting - with the radiotherapy being daily ive started to do that in some respects - but working daily and dealing with the pressures of work will not be easy. Over the past few months ive felt my mental 'resilience' has faded a bit and the inner drive everyone has to complete tasks has also died down a bit.

We'll see how we go...

Arif - December 2007 Snapshot

Now this was not planned, but i got my brother Ghaalib to take this photo as the stack of items in the centre of it are a nice summary of me in 2007! Everything in the photo plays a part.. from the letter in the background to the mouse + mouse mat in the foreground..

Cycle 3A - Reflections in context

The last post has a lot of the abstract ideas that i've had floating around, and i tried to get the reader to reflect just as much as i was by writing it. But as this blog is about me and my experiences through this lets get some concrete ideas down.

Anyone who is used to living a very busy life, then having to reduce this will have to adapt. There's very few people who knows all the projects, websites, writings, and readings that i'm involved in. Many know of a subset of them, but maybe not the full picture. There's many, many aspects. Work, Jamaat, Khuddam projects, friends, family, humanity first, personal research, The Tomb of Jesus website, personal contacts, professional contacts, cars, property, ebay, business ventures etc. I suppose these aspects are common to many lives, yet with myself i've felt a lot of these have been at a very high intensity simultaneously.

Reducing that itensity has been much harder than i thought - and i think the reason for this is that the pride / self confidence we all have stems for completing tasks and working on such projects and building a sense of achievement as we go along.

We need things we can look back on and feel we have done well on. If we are used to having many of those everyday then taking that away will affect us.

Lets stop making this so generic and get personal.

I need a sense of achievement each day. Without this i am missing something. Its like a drug almost. Without this drug things 'drift' and thinking about this frustrates me. Its wasted time, and thats something ive learnt over the past few years is the worst of all crimes. You cannot waste time, because time is so valuable and you cannot get it back.

But what if i'm not well enough to complete these achievements each day?

I think the answer is that then the 'drug' needs to be replaced with another drug. Up until now the 'drug' of achievement has been replaced with things to keep me busy. This is all about ignoring the sense of time wastage rather than remedying it. It masks the need for the 'achievement' drug rather than replaces it.

So what can replace it? I do not know the answer to that question. One solution is to change the type of 'achievments' to ones you can complete in a lesser state of health / activity.

Instead of working a 9-6 and making progress in my career i can buy a car and spend time working on it and improving bits and pieces. Also projecst that ive not had time for before - like a book - can now come back in to focus and i can work on those. They can provide that sense of achievement.

Personal relationships come in to a it as well. The 'personal worth' you feel is a sum of your own self-worth plus the value others put on your worth. I'm fortunate in that metric as well - although once again i am now questioning that i do just help people so that i then feel valued? Is it all about selfish ego again?

I digress...

With an extended period off work you need a good range of tasks to work on - tasks you can complete whilst unwell and that will give you a sense of achievement. Human contact and being around others will help your state of mind, but i think you need this projects and tasks.

Whilst on chemotherapy i've had much more time to analyse everything and think about all things. Any small issue in your life becomes a huge one as you have ten times more time to think about. In everyday life a busy person has less time to worry about things, but if you are not busy you can sit and worry all the time.

With chemotherapy the days drag. The longer this goes on the more its felt - as i near the end and i am looking towards the finishing line it seems to be coming up slower and slower. If you are having problems sleeping due to discomfort then any other troubles on your mind will amplify this.

This is when the treatment becomes more of a mental battle than a physical one.

People say you need to be 'strong' but no one ever really says what that means. Maybe its emotional strength? Maybe its being able to keep events in context and view the bigger picture? Maybe its about keeping away negative emotions and feelings? Maybe its all of them.

People draw inspiration from different things - knowing what inspires you is very important and its something i've drawn upon repeatedly.

One last tip. Music. When you are battling a negative mental frame of mind music / words can change this. Its a very personal choice but it can definately help. Nazms can work for some people, for others only heavy metal does it!

Lately a song that i feel talks well to me is Supergrass' 'Moving'

Cycle 3A - Reflections

What motives you?

This is the sort of thing you get asked in interviews and to which we learn text book answers about 'sense of achievement' and 'professional pride'. We learn to also leave out things like 'money'. But what does motivate people? I've always had a strong personal drive which has kept me going through lots of tough projects. But what does that really stem from? Its seen as a personal quality but is it really about arogance and ego? On TV an Indy Car mechanic said that the biggest motivational factor for him is 'pride' - he is proud of which team he works for and wants them to do the best. Is this not just about self-importance and an inflated ego though? Does it not lead to this? You want to do a good job when you do something - to show what you are capable of.. is this so people praise you and you feel good about yourself?

Does it matter?

Its interesting to know what motivates people. There's so many motivations. Completely opposite emotions can be responsible for people being motivated to the same extent in the same direction. Love, hate, anger, fear, desperation, happiness, sadness, joy, pain. In the world we live in many are motivated by money. Then you have those motivated by strongly held beliefs, religious or otherwise. The 'reality' which each person creates for themselves, made up of all their external and internal influences and inspirations, is the context in which their actions make sense. Its the playground in which their rules and ideas are fact. Its here where the calculations about motivation, self-drive, and emotions are all played out.

So whats your reality?

What is the utlimate goal that you are aiming for? Are the goals in your everyday life leading to this goal? Right away this sounds like religious rhetoric, yet you could be the strongest atheist and still plan your life towards goals and aims. Those living for the afterlife, what relevance and importance do you attach to the worldly affairs of this life? Are they still significant?

Many feel a conflict with a lot of 'day to day life' and their deeper spiritual and religous aspirations and hope for themselves. This is why people go on things like retreats. What should be the response to this? What can we do about it? Islam caters and plans for this with specific periods in which we stop and reflect. The month of Ramadhan gives Muslims this every year - and at the same time every week there is the Friday prayer, along with the daily prayers too. Yet, many Muslims will admitt they do not spend as much time as they feel they should on their faith. What should be done about that?

I find monks inspiring.

There's is a forsaking of the material world and dedication to a beleif. Isn't it true that if we fully believed in what many of us say we do then we'd live like that? Is that the answer though? Islam rejects that sort of life for specific reasons and asks its followers to engage in all aspects of worldly life too, politics, government, society etc. Each faith tradition seems to have elements of this though - or groups of people who do lead this sort of life.

It comes back to motivation.

What is our motivation for forming and living in societies? Is it a human spiritual need or a result of basic group theory and a result of evolution where hunting in packs was more effective?

What motivates you?

Why is working rewarding, and do you feel less valued when you are not working or achieving things?

If you are not working as much as you were before - due to illness say - how do you still feel valued?

Do i think 'Why me?'

I am a religious person, so how does being told you have a serious illness affect this?

Strangely enough during my stay in hospital for the biopsy to help diagnose me i was reading Dawkin's 'The God Delusion'.

In this book Dawkins talks a lot of sense, although he does also ignore any theological / scriptural argument that is not related to Christianity.

Still. Reading this whilst in hospital was very interesting. Does praying for someone help them get better? If so should this not be measurable? Is illness a punishment from God? Why are some people seen as 'morally corrupt' given longer lives than so many who are not?

The last two of those questions - though - are from a naive understanding of the world we live in i believe. Islamic philosophy deals with all of these and reflections on a world in which we are given 'free will' helps us to understand many of these things.

You never know what life is going to give you next. When you have good times, be thankful to God, when things go against you learn from this, work hard, and do the best you can. Anyone can get ill at anytime. Prophets have illnesses, we are all mortal human beings.

When i reflect on my illness and its prognosis i can only be greatful and thankful to the All Mighty. It was detected early, i had a very good chance of complete cure, its whilst i am young so better chance of fighting it well, it will mean a break from work...!

Overall it will be a testing time but i do not dwell on things like 'why me'.

There are things in this life you have some control over and some you have almost none.

I had no control over getting this illness and so my focus is working on all the areas i do have control over to help get me through this.

Overall my state of mind is peaceful, focused, and clear.

Not sure how long that will last though when the 'Chemo brain' kicks in!