Arif Khan's Blog

Jesus in India the Movie - Sales Over 6 Continents

I wanted to share this sales map with everyone. This is to reflect countries that have bought the DVD already - despite it only being shown on the Sundance Channel in the US. The geographical coverage is very interesting and amazing considering its only been available a little over 4 weeks.

This documentary includes sections from interviews i gave to Paul Davids near the end of 2006. Included in the bonus footage is a panel discussion that took place following the premiere screening in Palm Springs of the film. I was at this and take part in this discussion.

For those who do not have a copy yet i recommend getting one from the website or contact me if you want to buy and pick one up from me direct rather than buy online.

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

Jesus in India - Christmas on Sundance

The film, along with my role in it, is now officially out there. The DVD has been selling well online also from what i hear. Its interesting to think about just how many people have now been exposed to the ideas, thoughts and evidence surrounding the 'Jesus in India' theory as a result of Paul Davids' film.

The film presents all sides of the arguments. It gives the evidence for, and also allows those who disagree to voice their views.

Some of the press coverage and reviews of the film seem to have not appreciated this. They seem to take the snippets of those who disagree with the theory shown on the film as evidence for the theory being 'weak'. Audiences are used to, perhaps, being 'sold' something and having to do their own reading to find out how much of that to believe.

One thing that i now realise would confuse many viewers is Islam's response to the tomb in Kashmir.

How many of those viewing the film are even aware that Jesus is recognised in Islam in the first place? How many are aware of the the Orthodox Muslim viewpoints about the Crucifixion and Ascension that the majority of Muslims adhere to today?

One commentator highlighted that 'not even the local Muslims' believe it to be the tomb of Jesus.

For orthodox Islam the idea of Jesus being buried anywhere is a deep heresy. They, like the Christian world, await his second coming from the heavens. What is fascinating is that despite this the locals are still adament that a Prophet is buried in that tomb.

Is it Jesus? No, no, - we are told - its "Prophet Yuzu" - who travelled from the West. They even talk about him having come from Egypt.

To find out more about what i said in the film and some comments relating those quotes visit this webpage:

Arif Khan's Interview for Jesus in India

1 Year Post-Chemo

I had an appointment with my consultant yesterday. He did his usual examination and looked over the results of a blood test i took last week. All were normal and uneventful - which is good. I had this nagging feeling the past few days that it was a significant date. Like a birthday or anniversary. The 12th was my dad's 60th birthday - so i assumed it was that - but something kept nagging away at me. I was sure there was something else.

Yesterday i realised that it was exactly 1 year and 1 day since my last infusion of ABVD. Its officially one year since the last dose of chemo. Its incredible to think of all that has happened during the past 12 months. Its been an amazing, epic journey.

In ways it is another landmark along a journey - some aspects are fading away in to the past, such as memories of trips to the hospital for the chemo, yet other aspects of the 'journey' are just beginning.

Sundance Channel Slates Christmas Week Premiere for Thought-Provoking Documentary About Life of Jesus Christ

Sundance Channel Slates Christmas Week Premiere for Thought-Provoking Documentary About Life of Jesus Christ

Wednesday December 10, 11:00 am ET

Paul Davids' Jesus in India Explores Controversial Theory That Christ Traveled To India
Premieres As Part of Channel's DOCDay Programming On Monday, December 22nd At 9:00pm ET/PT

NEW YORK, Dec. 10 /PRNewswire/ -- Sundance Channel has scheduled a Christmas week premiere for Paul Davids' documentary Jesus in India, which examines controversial theories and legends that place a traveling Jesus Christ in India. Written, directed and produced by Davids, the film will debut as part of the Channel's regular Monday DOCday programming on Monday, December 22nd at 9:00pm et/pt.

Jesus in India explores questions surrounding Jesus' whereabouts from the ages of 12 to 30, a period variously known as the "Hidden Years" or "Lost Years." The New Testament offers no detailed description about His activities during that period; the only reference to those 18 years is a single sentence in the Gospel of Luke. Leading the film's investigation of these years is Edward T. Martin, the author of the new book "Jesus in India: King of Wisdom - The Making of the Film & New Findings on Jesus' Lost Years," and he also authored the previous book that inspired this motion picture, "King of Travelers: Jesus' Lost Years in India" (either book available upon request). Martin dates his curiosity about the "Hidden Years" back to his youth in Lampasas, Texas, where he was raised as a member of the fundamentalist Church of Christ. While working as Peace Corps volunteer in Afghanistan in 1974, Martin had his first encounter with East Asian accounts of the historic Jesus Christ - including the Indian legend that the young Jesus joined a caravan and took the Silk Road to the East, where He lived in India with both Hindus and Buddhists before returning to the Holy Land to begin His ministry.

Jesus in India follows Martin as he travels through India in search of documentary evidence of Jesus' presence in the region. The journey spans some 4,000 miles, including a visit to the Hemis Monastery in the Himalayan Mountains, where an ancient Tibetan manuscript about Jesus is said to be housed. The film also delves into other astonishing stories concerning Jesus' possible presence in the region, including the legend that Jesus survived the crucifixion and secretly returned to India, where he lived out his days.

As it attempts to sort legend from history, Jesus in India presents all points of view through interviews with respected theologians and religious authorities of the world's major faiths. Scholars appearing in the film include Princeton University Professor Elaine Pagels, author of "Beyond Belief: The Gospel of Thomas"; Professors Alan C. Mitchell and Anthony Tambasco of Georgetown University; and Rabbi Yitzchok Adlerstein, Professor of Jewish Law and Ethics at Loyola Law School. Representing Buddhist and Hindu viewpoints are the Dalai Lama, the spiritual leader of the world's Buddhists, and, in a rare interview, the 145th Shankaracharya, one of Hinduism's four ecclesiastical leaders. Among the others joining in the film's lively discussion are the late Monsignor Corrado Balducci, Apostolic Nuncio of the Vatican; historian/author Michael Hesemann, a Vatican-accredited journalist; and Brother Chidananda, director of publications at the Self-Realization Fellowship (SRF), the spiritual movement founded in the 1920's by Indian sage/teacher/author/philosopher Paramahansa Yogananda. According to noted critic Pete Hammond, "Jesus in India is a fascinating and profound film, a deeply spiritual journey certain to make you think and question in ways you never have before."

Yellow Hat Productions, Inc. in association with Paul Davids Productions, Inc. and Felicity Films presents Jesus in India, A Paul Davids Film featuring Edward T. Martin, Prof. Elaine Pagels, Monsignor Corrado Balducci, His Holiness the Dalai Lama, His Holiness the Shankaracharya, Arif Khan, Suzanne Olsson, Paul R. Fleischman, MD, Brother Chidananda, Daniel Entin, Rabbi Yitzchok Adlerstein, Michael Hesemann, Prof. Alan C. Mitchell, Prof. Anthony Tambasco, Prof. James Deardorff. Associate Producers Edward T. Martin and Robert Rotstan, Jr., Associate Producers for India Sanjay Shetye and Dnyanesh Moghe, Director of Photography Paul Davids, Music Score by Brian Thomas Lambert, Edited by Paul Davids and Anil Kumar Urmil, Produced by Anil Kumar Urmil, Written, Produced & Directed by Paul Davids. For additional information: www.jesus-in-india-the-movie.com.

ABOUT SUNDANCE CHANNEL

Under the creative direction of Robert Redford, Sundance Channel is the television destination for independent-minded viewers seeking something different. Bold, uncompromising and irreverent, Sundance Channel offers audiences a diverse and engaging selection of films, documentaries, and original programs, all unedited and commercial free. Launched in 1996, Sundance Channel is subsidiary of Rainbow Media Holdings LLC. Sundance Channel operates independently of the non-profit Sundance Institute and the Sundance Film Festival, but shares the overall Sundance mission of encouraging artistic freedom of expression. Sundance Channel's website address is www.sundancechannel.com.

RAINBOW MEDIA HOLDINGS LLC

Rainbow Media Holdings LLC is a subsidiary of Cablevision Systems Corporation (NYSE: CVC - News). Rainbow Media is a leading producer of targeted, multi-platform content for global distribution, creating and managing some of the world's most compelling and dynamic entertainment brands, including AMC, IFC, WE tv, Sundance Channel and VOOM HD Networks. Through IFC Entertainment, Rainbow Media also owns and manages the following: IFC Films, a leading distribution company for independent film; IFC Productions, a feature film production company that provides financing for select independent film projects; and IFC Center, a three screen, state-of-the-art cinema in the heart of New York's Greenwich Village. Rainbow Media also operates Rainbow Advertising Sales Corporation, its advertising sales company; Rainbow Network Communications, its full service network programming origination and distribution company; and 11 Penn TV, a company that manages Rainbow Media's NYC studios and post-production facilities.

Jesus in India - Sundance Press Release Hits the Press

View the official website for the movie at http://www.jesus-in-india-the-movie.com

The Sundance Channel put together a press release and out it went. Its been amazing who has picked up this story and reported in on their news pages. Here are some examples:

1. http://money.cnn.com/news/newsfeeds/articles/prnewswire/200812101100PR_NEWS_USPR_____NY51305.htm
2. http://biz.yahoo.com/prnews/081210/ny51305.html?.v=1

3. http://news.moneycentral.msn.com/printarticle.aspx?feed=PR&date=20081210&id=9441052

4. http://finance.aol.com/related/cablevision-systems-corporation/cvc/NYS?topic=165974868&tab=5

5. http://www.marketwatch.com/news/story/sundance-channel-slates-christmas-week/story.aspx?guid=%7B280557F3-D4F8-4E80-818E-FA5C3A653BFD%7D

6. http://www.tradingmarkets.com/.site/news/Stock%20News/2076622/

7. http://www.daylife.com/topic/Dalai_Lama/articles/custom/date/1?end=20081210&start=20081204

So there we have CNN, AOL, MSN news, and Yahoo. Not bad considering the film is not for another couple of weeks.

The movie will be shown on the Sundance Channel this Christmas, three times, yet also be available on DVD from the date of the first showing. The DVD is actually available for pre-ordering now from the movie website - just click the link below.

"Jesus in India" - Film Screening

On the 21st of October i took part in a screening event for Paul Davids film - Jesus in India.

It was the premiere screening of his latest film - Jesus in India. I was interviewed for the film and have been involved with some bits and pieces surrounding it. The screening took place in Palm Springs, California. Following the screening a Q&A session was held with a panel of people involved with the movie and i took part in this.

Details about the film and screenings can be found at the official website for the film

The following morning an informal breakfast was held with those involved in the film and other guests and i was able to attend this with my wife. Amazingly the dates for the screening had fallen perfectly for us to be able to both attend the event as part of our honeymoon. It made for one unique experience for sure and gave the honeymoon an added extra special touch.

Some photos from the event are included below.

   

 

A lovely touch on The Big Day

On Friday 17th October i got married. The same day we had the legal registry and also the Islamic part, the nikkah, so by about 6pm on the day we were husband and wife by all measures and standards! 

The girl i married - Rachel - also had had Hodgkin's Lymphoma and we got talking through a lymphoma support forum. Through this same forum Rachel had been in touch with a lovely couple from Scotland. Wullie and his wife Veronica had also been through the trials of Hodgkin's with Wullie having undergone treatment twice. He has now been clean for a year. Rachel had told me that Veronica in particular had been a huge help and source of support when Rachel was having her treatment.

On our wedding day both Wullie and his wife and two lovely daughters attended our wedding. It was a huge honour to have them there and they too felt privilaged to be there - so everyone was happy! A lovely, lovely touch.

Currently we are both in LA with the big 'Jesus in India' film screening taking place tomorrow evening - watch this space!

September Check-up + Marriage

On September 22nd i had a check up appointment with my consultant. In preparation for this appointment i went in last week and had some blood tests - 4 ampules worth of blood no less!

The appointment was at 2pm - yet i was sure it was 2:30 - which meant i got there for the wrong time! Thankfully it was very quiet - advantage of seeing him as a private patient - and so i was just seen after a short time.

My fiancee was kind enough to travel down to London to be at this appointment with me also - its at these appointments that i feel so fortunate about having someone with me who knows all about Hodgkin's and the treatment and all the terminology etc. She's been to two with me so far and its been a great help.

I introduced my consultant to her and explained who she was, our background, and her staging etc. The consultant, upon hearing of our wedding plans, immediately sought to reassure her regarding my treatment and fertility - which was good on his part, as i was going to bring up the subject later but glad he did so himself. He also said that girls react better to to Hodgkin's and its treatments. We talked about the clinical trial she was on and about radiotherapy vs no radiotherapy.

The blood tests and physical examinations were all fine and he set a follow up appointment in three months.

Also he said that he didn't feel the need for any repeat scans either - so next time will just be blood tests too. Next appointment is set for December 08 - hopefully i'll be married by then living with my wife.

On that front things have been less than smooth! The legal registry of our wedding is all set for mid October, but the other parts (for those of you asking 'what other parts?' i suggest you google some workds like 'nikkah', 'wali', 'rukhsati' and 'walima'!) are not too clear just yet.

Pretty sure i'll be legally married in a few weeks - but on the other items - watch this space i guess!

Fasting, Investment Banking and Marriage!

Its all happening. Everything is changing. Thankfully things on the health front are pretty static, but everything else is in transition. The month of Ramadhan has been testing, but its very good to be able to participate fully in it this year. Work wise, the world of investment banking is changing by the minute.

There are huge changes a foot in the next 8 weeks in most other aspects of my life also.

I'm getting married, going to LA for a special screening of the film 'Jesus in India' in which i appear, and hopefully moving from living with my parents to living with my wife in our own place.

All that within a period of about 8 weeks.

The question arises who am i marrying - and the answer to this is hyper-relevant for my blog. Mrs-Arif-to-be is also a hodgkin's lymphoma survivor. We had very similar stories of diagnosis and treatment. She was a stage IIA with enlarged nodes in her chest. She had 3 cycles of ABVD and was / is part of a clinical trial where she was randomly chosen to either have radiotherapy or not - she didnt have any. Just as she was completing her treatment i was starting mine yet it wasnt till after treatment that we got in touch via a cancer support forum. Sharing with someone of a similar age who REALLY knows what you are going through is something very special. We both have benefited from that ever since. She works as a bookseller and during her degree in race and ethnic studies with philosophy she took a year of Islamic studies and was the only non-Muslim in the class - but thats another story...

So its all happening - i got a lot to look forward and if i compare how bright the future is looking today compared with this time last year its quite amazing.

So even as the markets tumble, and as i sit here counting down the hours till i can eat again, and knowing my bank balance is going to take a hammering over the next few weeks, i still have a smile on my face and i'm looking forward to the future.

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"

Jalsa is complete and i'm still standing..

Its been a journey. If i was to relate all the stories and situations i've faced over the past 4 days it would be a very, very long blog post! Its been a historic Jalsa for so many reasos, full of significance and meaning, and for the 6 hours or so when i was actually at the site and released from duty to attend the event it was a moving and emotional experience - there's nothing like Jalsa.

The highlight of the day i went - Sunday - was the International Bait. I cannot desribe the feelings and emotions of being part of 10's of thousands of people speaking in unison pledging to serve the faith and live by the ten conditions of bait - which include pledges of obedience, high moral standards, being regular in prayer - each linked through a human chain formed simply by placing one hand on the person in front's shoulder. It was around 30 degrees that day - this took place at 1pm - we were in direct sunlight - yet i had shivers through my whole body during those moments.

People describe the Bait ceremony and re-affirmation of the pledges at Jalsa as a type of re-birth. For me as well it felt like a landmark day and event - Jalsa Salana is always a highlight of the year for an Ahmadi Muslim and it feels for me that coming out of the Jalsa experience is a fresh start. The past year's trials started around Jalsa 2007 - this year at the end of Jalsa 2008 things are very different.

Those who know me may be wondering why there's a big bit of news that i've not talked about at all on this blog - all i'll say is that im waiting for the right moment - "all in good time" - is one of my favourite phrases.

18th July - 1st August - Jalsa Salana UK 2008

The most exhausting time of year for me is the end of July. Every year the Ahmadiyya Muslim Community hold an annual convention in the UK - in recent years this has attracted in the region of 30k people. The members in the UK form the bulk of the volntary team that manage all aspects of the event.

As a child the three days seemed long and it was always hot and lots of walking around. As a teenager i got involved with the duties around the event, that was even harder. Over the last 5-6 years things have gotten tougher each year as my role has grown and as ive been involved in more senior roles. The period of time through which duties are required is 2 weeks. Tough.

The build up to Jalsa 2008 for me has meant lots of organising and administration. Its meant co-ordinating and dealing with lots of people and arranging meetings, finalising minutes, creating maps, and producing rotas - i'm not running a department, but it feels like it!

Now its coming up to the crunch time and this weekend gone was a very tiring one - the next 10 days are going to be a huge test. To be effective the duties in the three days of Jalsa [25,26,27th] have to start very early with the traffic + car parking areas being the main ones to plan / worry about. So i'm gonna have some very early starts and long tiring days. Gonna be tough! I have a good back up team and i hope they will be able to chip in fully - just one day of work left and then it will really begin…

Charity Walk 2008 - just under £1,700 for Cancer Research UK

I took part in the Ahmadiyya charity walk on Sunday 29th June - the walk attracted around 4,000 people and given this year's special significance for me i uped the ante on the collections and people contributed very generously [thank you everyone!]

JustGiving was the website i used to raise the sponsorship and id usually spam out the link to everyone i know - but this time i had to be a little bit more careful.

There are still people who have no idea about my diagnosis and treatment and return to work over the past few months. Even when i sent the link out selectively there were still some who found out for the first time via the link - not too nice - but at least they were able to do something positive after hearing and contribute to the cause.

The walk itself went very well - it was of course tiring but my recovery was pretty good afterwards and if anything it helped give me more energy and encourage me to get back in to some proper sports / exercise! With an amazing wimbledon final having just taken place on the weekend i think it will have to be tennis again - hopefully i'll be coming to a court near you soon!

here's my just giving link:

http://www.justgiving.com/arifkhan2008

OH Meeting - 3 Month post return to work

I think it was Friday 20th June that i had my OH meeting. The lady i had been seeing to date was on holiday and so i met a new guy this time. I looked him up on the internal directory - so id know what he looked like to help find him - and he looked like a big old grumpy guy!

Looks can be decieving! He turned out to be probably the nicest person ive had to deal with during the whole experience - he was well informed, sympathetic, warm, fully understanding and seemed to know what to say and when. There were things that i was thinking that i did not talk about but that he seemed to know i was thinking - a bit freaky!

He said how this meeting was meant to be just a final check - how the plan was that i would come along and say that everything was fine with returning to full time and that we could all move on. I said how generally things were fine, how being on the support rota was testing but id passed that one, and how this week had been very busy. I light heartedly asked if he'd seen me on a Friday on purpose as it had been a long week and i was worse for wear on Friday. He then switched in to a more serious mode and asked about if i had been finding i get more tired.

We then had a good chat about energy levels and chemotherapy - he said that i should not feel upset or frustrated at my energy levels not being back to full - he suggested that it would be a full year before that happened and that i should not think 'will things ever get back to how they were?' energy wise, because they would. He said how until then i should be careful and just appreciate that things may take more of a toll than before.

He said not to do anything silly, and suggested not taking part in the next London Marathon - i said that I WAS taking part in a charity walk next weekend but it was just a half marathon walk, and he felt that was fine.

The most impressive part for me was his comments about the follow up appointments. He asked about that - and i said that i was scheduled to have follow up for 5 years - and immediately, probably picking up on my feelings regarding that, he said:

"And that should re-assure you and not worry you in anyway.."

Great comment. Id heard it before but he then went in to an explanation about that. He really knew what he was talking about too - his advice was not general, but specific to lymphoma and my case too, impressive! He explained how in my case doctors are confident of the lymphoma being 'cured' and said how it may seem strange using the word 'cure' but he was going to use it in this case [which is an accurate description] but said that its rare that someone will be 'cured' and doctors say that they dont need to see him ever again for checks ups.

Its things that others have said, its something that logically makes sense, but the follow up for that long has always seem like a burden, or a chain round my neck that id not be able to fully shake off for years - but after his explanation i did feel a lot better.

At the end he said that he would like to close my case from an OH point of view - he said this with some pride almost and happiness and said that i must be feeling very happy. At this point i said how things had not really sunk in - how during the whole experience i've just done what i was told to do next and not reflected on it all really.

Right away he picked up on this and moved in to 'serious' mode and said that often its months afterwards that the whole thing sinks in - and makes you think 'wow, now that was actually quite scary' - or something like that - and he said that if thats the way im finding things to not be afraid to seek counselling. Even then he didnt call it 'counselling' - he called it 'cognotive help' which again, made it sound a lot nicer!

Upon me leaving he said how its funny, but that his parting sentiments would be that he hopes not to see me again - we joked about that and said how it must come with the territory working in OH.

A really nice experience, i've been very fortunate having such a supportive employer and its certainly increased my feelings of some sort of loyalty to them.

So, hopefully the final OH meeting - another mini-milestone!

Week 16 & 17 - Busy, busy, busy!

The fact that i've not had a chance to post on here should be a good sign! Up until relatively recently i've been not too busy at work - this has allowed me to work on other projects - but the last two weeks have been hugely busy at work! Just when i didnt need it as well!

On the evening of the 19th of June my previous company had a reunion just down the road and i was hoping to go along and see some familiar faces id not seen for a while - that very week of that event work got really busy and i was in the office till close to 8pm a few times, which is not that late, but later than ive been used to to date for sure.

The following week was even more busy and as i had two days of training as well i found myself logging in from home on evenings to get things done in time for a pending deadline. It was a good test of being really really busy and seeing how i got on - i was mentally exhausted a couple times but just about held it all together - although it did mean i didnt see much of family and friends for a while!

Overall i feel very much back to full on work wise. I had a good meeting with OH and also a good follow up letter from my oncologist - i'll post these in a separate post.

6 Months Post-Chemo CT Scans - Clear

I got the results of the CT scans today and all is well. They showed some scar tissue in the right axilla which is to be expected and apart from that there was nothing else. The phrase at the end of the report from the radiology people said 'No evidence of the return of the disease' - which is a good phrase!

I do not have to worry about these things now until next time - which is the 22nd of September.

Other Hodgkin's Lymphoma Blogs

As promised here are some snippets from a few other blogs of those dealing with Hodgkin's Lymphoma - i'm gonna include a brief summary of their age, location, staging and where they are at with their treatment. When reading other's experience i found it interesting how many of us were reflecting on the exact same thoughts and concepts.

One positive of this whole experience is getting to know this community of lymphoma fighters / survivors - its been very interesting to see how people from such diverse backgrounds and belief systems and cultures are able to support each other selflessly through all this.

Well here are the blog snippets

-------------------------------------------------

Darren (aka Daz), UK

Stage II

Diagnosed January 2007

18th January 2007

I have something called Stage II - nodular sclerosing Hodgkinson's disease. Which basically means the cancer still within my lymph systen and has not yet spread to my organs or bone marrow - Bonus!!
I have two tumours one in my neck approx 1.6cm diameter and one in my chest approx 1.4 cm diameter.
My treatment will be 12 fortnightly sessions of chemo (ABVD) - told ya so!
The treatment would have been just 6 or 8 sessions but my other symptom of night sweats (uuuurgh!) means I'll be getting the full bifta. All sorts of blood tests during chemo, mid-term CT scan and a completion PET scan in Aberdeen also to look forward to.
Lets get this party started........................

JUNE 2007

“I asked him about the likely hood of a relapse which is always possible with any cancer but especially with the Hodge. For a bloke of my age and condition (ripped!!) I have roughly 85% chance of cure - that's about 1 in 7 chance of relapse. I must admit, relapse has been on my mind quite a bit since I was told I had the all clear, I keep getting the odd twinge in my neck around the biopsy site and often mistake the small scar tissue lump for for a swollen node with a corresponding leap of dread in my chest until I realise that its nowt to worry aboot. I'm now on the lymphoma follow-up program and my next appointment is in three months time.”

JANUARY 2008

I've had this bloody cold and chest infection for over 6 weeks, even had a course of anti-biotics to little effect. More ominously, in recent weeks I've felt a little 'gladular' particularly around by biopsy site and also more tired than usual - pretty much how I felt when I was diagnosed!!! And get this, the hair on my face which stopped growing when I had the radiotherapy has stopped growing again! Hope this is just some sort of radiotherapy flashback and nowt more serious.

-------------------------------------------------

Bekah

Aged 24, US

Diagnosed – Jan 2007 – Stage IVA

Clean Scans in May / July / November

Relapsed January 2008

Tuesday, January 15, 2008

Choices
 
As life hands each of us challenges, we begin to realize it is not the challenge that will mold us into the characters we are, but how we choose to react to these challenges.

Last week through a pathology, oncologists did confirm that the Hodgkins Lymphoma has returned. My choice is to continue with treatment.

February 13th, 2008

There is something incredibly devastating about this illness when you're going through treatment. In turn, it is something pretty obvious as well.

Cancer is not beautiful nor sexy. It is not attractive in any shape or form. And no matter how much positive energy, will power, and fire you have inside you. It is still cancer, it can still be depressing and bleak and overwhelmingly heartbreaking.

Any illusions of this form of treatment being tolerable have subsided. As this past week has probably been one of my darkest, in my life. Hence me not updating. Trying, desperately to figure out how to state, "god, I hate this disease," in an eloquent fashion. And creating the facade of everything being okay. Instead of feeling broken.

-------------------------------------------------

Rachel

Aged 23, UK

Diagnosed March 2007 – Stage IIA

July 2007 - Clean PET

Tuesday, 20 May 2008 - This cancer card lasts forever, damnit

This is a rant so you should probably stop reading now!

As the title says, this cancer card lasts forever. Yeah so mostly I may say that I'm over the whole cancer thing and I may be 'better' and I don't really get worried about stuff like scans, blood tests etc, but this cancer thing is for life and I've never denied that. There has to be a silver lining somewhere and mine is the CANCER CARD, damn you, and you're NOT taking that away from me.

What do you think when you get a cough? Do you worry that the tumour in your chest is back and making you cough again, or do you think ooh time to get out the cough medicine to ease my poor poor tickly throat? When you get a cold, do you worry that there's something dodgy going on in your immune system again, making you unable to fight off simple bugs, or do you think ahhh time for some Kleenex Ultrabalm and a fluffy blanket and a day in bed? If you feel tired and achey, do you wonder if it's a symptom of something sinister or do you think you must've had a busy week at work? Can you guess which ones I think, which ones I'm SUPPOSED to think? For the rest of my life I'll be on high alert for symptoms and clues. You don't know how easy you have it. So, I have a cancer card, it's still valid and it's valid for the rest of my life. You're not taking that away!

Rant over.

-------------------------------------------------

DARREL HALE

23 year old, US

23 year old Colorado native and classical musician. Graduated from the University of Colorado with my BM in Bassoon just in time to be Dx with NS Hodgkin's Disease. Finished that battle in Oct. only to have it return in Jan. '07. Oh, what a wonderful life!

January 2008

I just wanted to take a moment to update all of you on the results of my 9 month post-transplant scans. These three month check-ups have become part of the nerve-wrecking pattern that my life has now assumed, at least the next few year. Not fun, but important and unavoidible. This Decembers scan was especially taxing because it was this time last year that my scans showed what would become a relapse. I have been feeling pretty good for the most part, with my energy and clarity of mind returning almost to pre-treatment levels. My lungs and sense of touch are still not back and although they are not expected to ever fully recover, I am finding ways around the limits they impose.
 
--------------------------------------------

Wullie

32 Years Old, UK

Diagnosed - June ’06 – Stage IIA

December ’06 – Clean PET

Monday, March 12, 2007

"Yeah. So... OK."
Pause
"We're not happy with your latest CT scan results"

SHIT!

"The scar tissue in your chest has grown a bit. I'm really sorry."
Never mind sorry; what the hell happens now.
"I'm going to go down the road of high dose chemotherapy followed by a Stem Cell Transplant. Sorry"

Veronica and I stumble from the oncologist in a state of absolute shock. This wasn't in the script. Only three months ago we were told "You're in complete 100% remission with little to no chance of
relapse!". How the hell did we get here? Today was supposed to be the day I could put the nightmare of the last 8 months behind me. What is going on?

Week 15: End of Week

Thankfully the rest of this week, after the crazyiness of Tuesday, has been quiet. I've still been busy in the evenings and plenty to do at work but less stress and high profile issues.

I'm very greatful its Friday - 8am starts at work take their toll as i need to be out the house by 7 and not home till after 6. I could do with some extra sleep this weekend for sure.

I've booked an appointment with my oncologist, it will be on Monday - i'll then get the results of the CT scan and the blood tests - should be fine but lets wait and see.

I'm planning to put together a post over the weekend taking snippets from other blogs of those who have been through Hodgkin's as well.

Week 15: Things get stressful at work!

I've always felt that a real test of how well i am these days, mentally and emotionally and physically, would be how i coped with things when work got busy / stressful. This week I'm on support for Tuesday to Friday - Tuesday morning i was in at 8am and it was non-stop drama right through till 5:30ish. We had the biggest issue we've had for weeks and a mistake by me was the root cause! That only came out later though, the initial stress was co-ordinating the effort to get things back up and running and later the causes were investigated - it was something quite obscure - but about 4/5 different teams had to be involved and there was a report that was unavailable to clients for 3 hours!

Everyone was really nice after saying it wasnt my fault and in ways it wasn't but in ways it was and sometimes its easier if people are not overly nice when you've made an error! Anyway, it was as stressful as it could get and very senior people got involved and the whole issue has been disected in minute detail by the whole global team so its been testing - but i just about made it through - and in ways i won some respect and credit during it too.

Its another achievement for me - another item to chalk up on the list - in ways its answering questions about if i can 'cut it' that were around before any chemo! A nice evening would have been good, but i had more IT woes at home with Royal Mail and Smartstamps - wont go in to that!

I still need to call up the hospital and book an outpatient appointment to go over the CT scan results and blood tests i had last time - should sort that out today actually.

Overall things are ticking along but I feel i need to get on with life now - get on with bigger and better things in life - march through more milestones and get myself back on course regarding the bigger goals in life to go beyond the daily routine.

Week 14: Back at Work

This week i was back in the office following the week out of the office.

I thought it may be hard getting back in to the work routine after that week off - but instead i felt very much refreshed and ready for work. Working full hours mean i typically get home at 7:30pm and there's always website related tasks i need to do in my evenings so time during the week is tight.

To be properly ready for work the next day ive found that i need to sleep earlier and earlier - often i'll be in bed by 10pm these days.

I did have two rough commuting days on Wednesday and Thursday and subsequently it was very difficult motivating myself to go to work on Friday. Its hard to know if thats a post-chemo thing, or just a general feeling.

I made it through the week - although i admitt Friday afternoon was not very productive at all!

Next week i'm on production support again - this mean 8am starts again - thankfully i dont have to do this on Monday - but will the rest of the week. My manager is off for two weeks - but this is a bad thing as he is very useful for support related queries and general questions!

Healthwise i feel ok - i full day plus some tasks in the evening does tire me out - but i think its to be expected. Fighthing your way from A to B on a packed tube is always testing.

Friday lunchtime i managed to make it to Friday prayers in Aldgate East - i'm glad i made that although that trek too takes its toll with lunch being delayed.

On Monday i hope to book an appointment with my Oncologist to go over the CT scan results and blood tests - probably will have an appointment in the next few weeks.

Other than that its been a good week - i was asked what my 'ideal' job would be and / or where i would like to be career wise in 10/20 years - i really struggled with that one!

Any ideas anyone?

3 Month Post-Treatment CT Scan

Had my CT scan today - i dont like CT scans! There's so many steps to it..

A week before you will get a package from the hospital with two bottles containing a contrast medium. The contents of these bottles are to be diluted and drunk at specific times on the day of the scan.

The stuff in the bottles tastes horrible! Even diluting it and adding some squash will not disguise just how horrible it is!

I had to drink one load at 6:30am, another load at 9:30am - then two cups worth at the hospital itself - and then one last cup just before going in.

Ok - so then you lie down and they get ready.. you then have a cannula placed in you and then as you are going through the spinning ring the injection kicks in and you feel hot all over your body - a very strange feeling indeed!

During the scan you have to hold your breath at various stages and sometimes have your hands above your head - all quite tricky and not very comfortable.

Once that was all done i had a blood test - that was quick and much simpler than the scan - i then went home and worked from home for the afternoon!

I get the results of the CT scan in about 10 days - need to book an appointment for that.

Before the scan i was not allowed to eat anything either - and the contrast medium drink messes up my stomach always so ive been quite careful in what i've eaten in the afternoon / evening and tummy is still rumbling and making weird noises!

With this one out the way no more scans till around September time.

Week 13: Out of the Office

It seems ages since i was last at work. I've been off work since Friday 23rd May and been up to a mixture of things. The first weekend i did very little indeed - i watched the England cricket team appear to throw away a test match and then Monty Panesar turning the game on its head and England somehow winning!

On Bank Holiday Monday i was involved with the set up for the Khilafat Centenary event held at the Excel Centre on Tuesday. I was with another couple guys and transported some exhibition boards from Morden mosque to the Excel centre and then drove home - that alone took out the whole day.

The event on Tuesday was truly historic. While the rest of the Muslim world searches and prays for some sort of strong leadership the Ahmadiyya Muslim Community celebrates 100 years of being led by a Khalifa - the exact system the others are crying out for. Other Muslim groups believe the Khalifa / Caliphate will be a secular leader rather than a spiritual leader, the correct model of Caliphate is there right under their noses, yet they are instead hell bent on trying to destroy the Ahmadiyya Community rather than embracing it.

Getting 17,000 Ahmadi Muslims to the Excel Centre on a weekday was quite something. I travelled with my family and pretty much in charge of getting us all on and off the correct trains. The day was a long one and we all got home about 5:30pm and had lunch then! It was a special day but a very tiring one.

On Wednesday and Thursday i had some personal time and drove up north and came back on the Thursday evening.

Friday was a testing day also - work encourage their employees to take part in community work - they liase with charities and put together projects for people to volunteer on. The one i did this year was sanding and varnishing benches at the Royal Hospital of Neuro-Disability. It was a tiring day but rewarding and great to see the work the hospital does as well.

I got home exhausted Friday evening knowing that the next 24 hours of my life would be dominated with helping a friend move from Kingston to Feltham!

Saturday was the main day of the move and my mum's A-Class was a great help. We were able to move everything in just two trips, including at least 4 suitcases and a bike!

Sanding benches followed by helping someone move house is a killer combination but i just about made it through - Sunday has been a quite day physically!

Monday i have a CT scan and also some blood tests - i'll post more about that tomorrow once i'm done.

Week 12: Friday..

Ok - yesterday i was being very negative about things - but i was exhausted and the early starts definately had caught up with me. Wednesday night i had gotten to bed about 10:30ish - just before the penalites in the Champions League final - but didnt get to sleep till around midnight - i think that took its toll also.

Thursday evening i had a huge headache and felt light headed and all the rest of it - it was depressing and i was half feeling that maybe working full 5 days a week and getting in at 8am [which is not that early really] is just beyond me post chemo - that was not a nice thought! Thursday evening i rested and was in bed by about 9ish and slept soundly.

Today im pleased to report things are much better - the headache has gone and ive been back on form work wise - we had a meeting this morning for the current project im working on and i was able to contribute hugely to that - as has been the recent trend which i hope to continue.

So perhaps I can make it.. getting in for 8am generally is a good habit and will help me progress here career wise - wonder if i can keep it up - or is it going a bit far too soon as ive never been in that sort of routine for my entire working life to date? Guess i'll experiment and see.

Energy wise i have some days off next week too along with a charity day that i'll post about as well - so should be a good opportunity for some battery recharging!

Week 12: 8am Starts are TOUGH

Its Thursday - and its about 3 minutes till my day at work ends - i'm almost there - but i am not in good shape! Each day this week ive had to be at my desk for 8am - that is a lot harder than it sounds, its meant leaving home around 7ish. So far ive made it each day, although each day ive been getting up slightly later and rushing that little bit more.

I've been starting at 8am as ive been on the support rota this week - first time im doing support too - thankfully that side of things has gone very smoothly. Its taken its toll on me though. The start of the day is fine - and i'm buzzing at 8am - but come 11ish things seem to drag and the afternoons are hard! Concentration is not what it should be and they have not been the most productive days at all.

Come the evening and i'm exhausted. Its definately a cumulative thing too - roll on Friday and the bank holiday weekend!  Last two evenings ive been struggling to stay awake passed about 9pm.

Having said all that negative stuff its great that ive been able to get through it (assuming i make it through tomorrow) and its another thing to tick off on the recovery / rehabilitation checklist - the OH lady will be proud when i tell her. Right - home time!

Life - 3 Months Post Treatment

It was exactly 3 months ago that i had my last dose of radiation. February the 15th.

A lot has gone on since then, a LOT.

One thing that is clear to me - and its something ive read on other lymphoma blogs - that this whole struggle / experience / ordeal / trial does not end with a clean PET scan. It does not end with returning back to work. It does not end with going back to full hours. It does not end at all. It becomes absorbed in to your very being and essence and becomes a part of you.

I remember a close friend of mine talking about some seriously life changing experiences in her life that i only found out about many years later. Looking back she wrote something along the lines of:

"Over the past few years I've been working on my own life road as well. In between health problems, depression, broken relationship, suicidal tendancies, substance abuse, and a life of crime its amazing that i'm still on this planet...."

She went on to talk about this reflectively saying:

"That period in my life is a part of me, but i dont let it be the definition of me"

I feel there's a lot to me taken from that. But you know what? Putting the cancer thing 'behind you' if you like is very difficult, there's 5 years of follow up for a start. In addition its unfair on myself to try and forget. I cannot remove it from my being, its part of me, its part of who i am. Its not the definition of me, but its a part of me that will always be there.

I dont think of that as a negative thing.

I remember joking with my good friend Abubakr that if i was a character in a play / film / story then i've suddenly become a much 'deeper' character based upon all thats happened the past year. I've always been a complex person, made up several different facets, but now there's added breadth of experience combined with even more depth! Again, i feel ive been a very deep person anyway - but after this year i can draw on even more experience and feeling.

Going forward then - for the next 5 years - the doctor's trips and all the emotions and feelings that go along with that will still be around.

How does that influence my outlook on life?

Its something i have to factor in when planning all aspects of life. It affects career plans, personal plans, marriage plans, family plans, property plans, investment plans.. most things!

Does that get me down? Not really - i am just aware that my needs and requirements and wishes in life are quite different to what they were a year ago. Its all part of the cycle that is life and its certainly been an interesting journey.

The rest of this year in itself promises to be a very interesting one - there's scope for a lot of change in this time - watch this space.

Week 11: Is it still only Thursday?

This five days a week thing is hard! On its own it would not be too bad but throw in having some very early starts [well, earlier than i'm used to at least] along with lots of tasks to manage and compete in the evening and it becomes TOUGH.

Right now its Thursday afternoon and im sat at my desk rubbing my eyes a bit, wondering what im supposed to be doing and trying to motivate myself to do it! I got a coffee and a snickers to hopefully rally the energy levels and alertness. Getting out of bed in the mornings has been harder and harder each day this week. On Wednesday i was at my desk for 8:40, which was good, but it took a real concerted effort, and much suffering on packed trains / buses - yet really that should be the time i'm in everyday.

From next Monday i'll be on production support for a week. This will mean getting in for 8am, and being open to lots of stress and having to work on business critical issues - quite daunting! Doing support anyway is daunting, and being in for 8am everyday in only my second full 5 day week is daunting too, put them together and its gonna be one hell of a week.

At the same time i know i'll be very busy in the evenings as Jalsa is approaching and there's still always a million and one things to do on the websites i manage...gonna be tough..

The speed of the passing of time

During Chemo time went very slowly indeed. This was not necessarily because i was anxious or worried or that i was always 'waiting' - but more due to the complete change in daily routine and level of activity. I went from moving jobs to a big investment bank, buying a flat and doing DIY work there almost daily, managing at least 7/8 different websites, keeping in touch with a diverse array of friends and colleagues, and all the other bits and pieces to then quite quickly having almost none of those.

My level of activity during the treatments dropped massively. I still had a lot of tasks to keep me busy - but it was very very different to life before chemo. I had a lot of spare time, i had to conciously plan tasks to keep me busy, i sought out projects to keep my brain ticking over. In some ways it was very nice to have that. I couldnt be too ambitious, though, in terms of what i worked on when off as i was not feeling 100% by any means and was always being told to rest - and on days didnt feel like doing anything majorily involved.

As a result of this drop in level of activity time just seemed to slow down. I've often said that during that time each day felt like three separate days. The nights also dragged. My sleeping patterns were all over the place and keeping a routine was hard, especially as at times id feel tired / sleepy in the middle of the day.

Now that i'm back at work i can finally say that time seems to be speeding up! I've been back at work for almost 10 weeks and its gone very quickly. Its already May. Jalsa is approaching, once Jalsa is out the way it will be August - that was the time i got my diagnosis last year. In ways it seems much further away than a year, in others it feels much closer than that.

So is it nice time moving quicker? In ways it is, things progress more, and its nice to have a routine similar to other people rather than being in a world of my own, yet in other ways its a bit scary how fast things are going. You appreciate things more when time goes slowly, where as in the current hustle and bustle things are racing past all the time.

Having said that things moving on and always changing helps avoid long periods of time spent doing nothing but worrying or over-analysing things. Its been a journey - the last year - and spending too much time dwelling on it can be negative. Having said that its important for me to remember what ive been through and draw strength from coming out the other side.

Right, back to work!

Week 10: 4 Day Week - But a long one!

Its been a long week. The daily routine is getting to that level where i feel i'm running non-stop. This has been made worse by meetings in the evenings - its so happened that this week ive had events / meetings in the evening wed / thurs / fri. In addition to that i had a pretty early start on Thursday when i was on the 7:50 train and at work at 8:40. The heat also has taken its toll, although its been really nice overall.

I'm glad its Friday, but the hard work does not stop there for me sadly - now as Jalsa Salana approaches things are starting to get very busy. I'm sure i should be taking things easy, but right now it feels like im stuck on an escalator that just keeps going higher and higher!

Its been an interesting few days as well at the same time; seems like there's never a dull moment in life, but that level of activity / intensity takes its toll, especially when things are so busy in relation to work, websites, Jesus in India stuff, personal relationships, professional relationships, personal projects, Jalsa, and emails!

This weekend should be good - there's talk of 28 degrees - summer seems to change everyone's mood and the whole feel of things.

Hours at Work

Moving to full hours is a big thing. Staying an extra hour at the end of the day is not too bad - coming in for 9am is more tricky! This morning i was on course for the 8:20am train - that would have gotten me to my desk for about 9:05. Its a 45min journey if all goes well.

I got to the station and both ticket machines were out of service so there was a long queue for the single ticket office position that was open. The queue went back up the stairs to the platform! Needless to say i missed the 8.20 train and got the 8:34.

Travel at that time means ur unlikely to get a seat and due to the number of people using the train then its always busy and slow getting in to Waterloo! Once at Waterloo the queue for the bus was probably about 100+ people long when i joined it - it even went round a corner! The busy journey itself - which is 10 mins if all goes well - took over half an hour.

I got to my desk at 9:40 and the whole experience is just stressful and tiring! Thankfully i didnt have any 9am meetings today, but on Thursday i have meetings in the morning from 9am through to 11- so need to be properly awake and settled at my desk for 9!

One nice thing is the weather - i think many of us are now getting that summer feeling after the long weekend - roll on summer!

Week 9: Back to full time.. sort of

As of the week starting April 28th i am officially up to full time. I've described it as 'sort of' full time, because this week i had Monday off, and next week is a 4 day week. This means that i'm officially back at full hours and days and so full pay, but that i have another couple of 4 day weeks to ease me back in.

Wednesday was the first day i went for a 9am start - and it was tough! The biggest issue though was more the rain than anything else - whenever it rains public transport seems to move extra slow and i did get rained on a lot at various times during the day - that added to the general change-in-routine feeling and it was a tough day! The journey home took almost an hour and a half and i had a meeting in the evening at the mosque too!

Thankfully the meeting got canceled due to a wardrobe malfunction for the meeting organiser... you wouldnt believe me if i told you...it did take out my evening though as i prepared for the meeting, got showered and changed, drove to the mosque, and meeting was only canceled about 9:20pm.

Today is Thursday and i was at my desk for 9:15 and its been a much much better day so far, even the sun is out.

Post-Treatment Letter from Oncologist

Here is the main text from the letter by my oncologist to my GP and everyone involved in my case - emphasis is my own.:

"Re: Arif Khan

Diagnosis: Stage 1A mixed cellulairty Hodgkin's lymphoma of the right axilla Diagnosed August 2007. Treatment: September to December 2007 four courses ABVD chemotherapy. Completed IF radiotherapy February 2008

I reviewed Mr Khan on 7th April 2008. Clinical examination revealed no lymphadenopathy and no palpable liver or spleen. He is now six weeks from completion of the radiotherapy, which went almost uneventfully, apart from minimal irritation of the site of the radiotherapy in the right axilla. The plan is to follow him up on a three monthly basis in the first year. I have organised for him to have a CT scan and haematological / biochemical profile in June.

Yours sincerely"

Its good that the examination appeared to be clear and we'll see how the CT scan goes. I can't feel any enlarged lymph glands anywhere so im quite optimistic that all should be well.

Week 8: Work Experience

Thought id post on here to let everyone know i'm still plodding along. Still surprises me how people still read this blog, but its a good way to check up on me, and i'm glad they do!

Things have been good since the last post. Last time the post-treatment checks were at the forefront of my mind but now the meeting with my consultant seems a long time ago - and the scans in June a long way off. Managed to have two long overdue reunions last week, the first was at the Peninsula with guys i worked with at Cerebrus, the second was for Dim Sum with the Searchspace lot - although on both occassions it was just 4 of us - but definately worthwhile!

Had some informal feedback from my manager today at work as part of the annual review process - he mentioned a couple of areas to improve on and also had some very nice things to say about work ive been doing lately - although we both talked about how its a bit odd with the 6 month break. Good signs though, he's my line manager and he had far more positive to say than negative - so im happy!

Thursday i meet OH again - i'm pretty sure i'll be going back up to 5 days a week from next week - that will be good - it means my pay should be back to full if nothing else, as last couple months it has dropped a bit as i passed the 6 months landmark.

5 days a week again will be another checkpoint to tick off on the return back to something like 'normality' on the work front at least.

Return to work: 6 Weeks On

The past 6 weeks have both flown by and gone slowly. It seems a lifetime ago when i was starting back at work post treatment and worrying about how that would all go. A lot has happened during that time and a i feel very different both physically & mentally than i did at the start.

Things have gradually increased workload wise yet its been pretty much the perfect mix of not being too much yet at the same time not being too little. Initially when i started back i was given a lot of help, then slowly more responsibility was moved to me, and then the guy i work with was off for almost 2 weeks - pushing me to the forefront - that was a good step!

Last week was probably the most productive of my time here and then this week has also been very good. Its not been as busy workwise but ive been working longer hours and also been fully involved in the new project we are starting.

The project will have myself and james dedicated to this one project for the whole rest of the year - and the scope of it is huge too. Its a chance to start from a clean slate almost and get my teeth stuck in to something major. The project manager is new to the area too so its a fresh new team in ways.

I'm on 4 day weeks currently - next week i'll do the same - but i'm considering moving to the full 5 days a week a bit earlier than planned before as its getting to the point where the day off is disrupting the flow of work .. the fact i get paid a bit less for each day i take off may also be a factor!

3 Month Post-Treatment Check

I met with my consultant on Monday. Have gave me a check over - said all seemed fine and then scheduled a CT scan for June.

One interesting part was him asking me if i had been blogging on the internet!! I remembered how i had mentioned his name a few times on this blog and how it gets picked up on Google searches - quite funny!

I got some good information on the post-chemo follow up.

Checks will be every 3 months.. then move to 6 monthly.. then finally annually - i'll be seeing him for.. the next FIVE YEARS!

To me that is quite a big deal - in terms of putting something behind you and being sure its gone and not having to worry about it again that 5 year time scale is a big issue with all of those things.

Well, good news that i seem to still be clear though - guess we'll know more in June.

3 Month Post-Treatment Review

This Monday i have an appointment with my consultant, Dr A. It will be the first time i'm seeing him since my last PET result.

The last PET result was not 100% clean and there was still some lingering thoughts in his mind and he did say that they'd 'keep an eye' on me.

Since then ive not seen any evidence of the lymphoma returning so i am hopeful it will be a quick check up. What will be interesting will be if he will ask for another CT scan or PET/CT scan - or if just a physical examination will be sufficient.

Another thing i want to clarify with him is how long they will be monitoring me in the years to come.

I'm working from home in the morning on Monday and hope to go in to the hospital around 2pm ish then log back in to work after that.

Occupational Health: 4 Week Review

Popped in to occupational health on Thursday this week (Thursday 3rd April) for a catch up on how things are going.

I was told i am looking very well - which is one of the few benefits of having had cancer, you get told that a lot which is nice - and asked how ive been feeling and what hours im currently on and plans for the future weeks. It was decided that its not time to move on to 5 days a week yet. The plan is to stick for 4 days a week for the next 3 weeks, but up the hours to be from 9:30am to 5pm.

In terms of hours now its getting to the point where i end up staying until ive finished what i need to finish - so the end cut off day time is pretty meaningless to me - as ive often stayed past the 4pm / 4:30pm time ive been working to. The start time in the morning is crucial though.

Just getting in 30 mins earlier requires a fair bit more effort and stress and means the transport system will be that much bussier so it may be a stand all the way to work job. That does present different challenges.

From this week [starting 7th April] i'll be starting at 9:30am so will be travelling during peak time again. That is going to cost more as well as being more busy - but should be fine. Still having a day off is a nice thing to have - especially with it being Wednesday!

Intensive Week - 31st March -> 4th April

This was the busiest week ive had for a while - and it was off the back off a very busy weekend.

Monday was the one day i got to relax to some extent. At work these days i stay now till about 5 / 5:30pm. Tuesday evening i was out in London and met up for a meal with a family group who had just been to see a play in the west end - i think we went in to the restaurant about 10pm and it was well past 1am before i got home.

The next day - Wednesday - early start again, now i did have the day off work and it was pretty much a day of leisure and socialising BUT still meant that i was very busy all day. Went from the London Eye to cafes, to boats, to work offices, to Waterstones, to Burger King to home! Got home about 11pm.

Thursday had an earlier start than normal as i met with occupational health [more on that later] and then after work we had a team evening out. The timing of it could not have been worse as i had a lot of things i needed to do this week and seemed to have zero evenings free! One of the ladies in our team was leaving and also it was an overdue team outing that had been talked about for a while. It started off at a bar called the patonoster, but ended up in Nandos London bridge [can you see my influence at all?] and overall was a good evening although i was knackered! The journey home was not good as the Jubilee line was suspended due to some electrical problem - got home at midnight.

Friday - this Friday was probably the busiest day for me at work since joining the investment bank i work for! Got a lot done though. The guy im currently working with on projects - James - was back from Holiday on Thursday and there were quite a few items i needed his help with. We were able to crank through all the open issues in the space of a few hours - and then i was able to do some coding too and set everything up for some senior business people to login and check out. All went smoothly and i was at work till 5:45pm - which is quite late compared to current schedules!

It was basically a full week for me and i feel fine today, which is good! I did have a lie in but have a big presentation to give on Sunday at the mosque during a regional even - approximately 30mins - so busy today with preparing that. Ive been working on it during the week by taking my laptop to and from work and doing bits on the train [i know you'll probably read this rash - so that part is for you - talk about committment eh?]. If it goes well i may even get a snippet of the presentation online.. if thats allowed.. should be fine.

I am looking forward to doing the presentation - its an important skill to be able to present and its been a while since i've last done one - so looking forward to it. Also im sure there will be plenty of people who i've not seen for a while and who may have heard ive been unwell, so getting up on stage and running this presentation - which is listed as one of the highlights of the programme for tomorrow - is a great opportunity and a bit of a statement announcing i'm back on the scene in ways!

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?

Easter '08 - 3 weeks-at-work mark

Not posted for a while - so here i am.

Been back at work for three weeks now. Overall id say its going as well as i could have hoped for. Still on three days a week - although that will be increasing to four soon. Workload is still light and i'm still being eased back in to things.

This week the guy i work the most with - James - is not in and so that will mean more work and responsibility for me. I think i'm ready for this now, the timing has been good on that front. The other day I did a review of some code James had written and i was able to suggest a few things that showed to myself i still was able to think about code - which is good to know!

This week i'll be doing some proper development work - as the changes i suggested in the 'review' he asked me to implement myself as he's on holiday - so i'll do working on that.

Energy levels seem fine, but then my routine is not very settled, but that is good as it means things are getting back to the sort of 'all-over-the-place' routine they were on prior to all this.

Still far too much work on websites and other publications occupying my time - but its pretty much going on.

Biggest issue for me at the moment is how cold it is! Snow during easter? So much for global warming...

Radiotherapy: 4 week post-treatment follow up

Yesterday at 9:30am i also had a post-radiotherapy follow up session with Dr P at the Parkside Oncology clinic. It was strange being back there. This flurry of appointments in the past couple days (3 of them) is a reminder / reality check on things. Being back at work has made things almost seem back to normal, and this is a reminder of what i've been through the past few months.

Thankfully all the meetings have been very positive.

The appointment with Dr P was a chat first about how things are going, talk about work and the plan there, and then a physical examination - he's always very thorough on that front!

All was fine with nothing unusual to report. He's very pleased with how the skin under the arm has healed and has told me to keep using the aqueous cream for the rest of the year. The harder part is that this cream also needs applying to my back around the same area and that is not easy to do!

Dr P will also stop seeing me now and Dr A will be in charge of all further follow up.

So in the space of 2 days ive gone from 4 people managing my case, to 2 - thats gotta be a good thing!

Occupational Health: 2 Week Review

Yesterday [Tuesday 18th March] i met with the occupational health representative who has been dealing with my case. We talked about being back and how i've been finding it. Then we extended it to talking about adding an extra day to the plan.

Now with the 4 day weekend coming up the schedule is a bit messy - but what we've now decided on is that next week i'll just take Wednesday off, meaning i'll work 3 days that week. The following week i'll only take wednesday off also meaning that will be 4 days that week.

March 24th: Tue/Thurs/Fri
March 31st: Mon/Tue/Thurs/Fri
April 7th: Mon/Tue/Thurs/Fri

For now the hours will remain the same at 5 - although this always varies depending on what work i'm doing, and i've stayed till 4:30pm a couple times - rather than stopping at the planned 3pm.

Today i also had a meeting with Dr Girder, from the Critical Health Solutions [CHS] team. It was again just a follow-up - after seeing me today and asking how i am he said that from today CHS would be closing my case. OH would manage it in terms of getting me back to work. Its a small token statement, but it definately helps me "feel" im better.

So i know my timetable for the next few weeks - that is good to have that formalised.

In terms of workload its been steadily increasing, although thankfully i'm working with someone else on projects at the moment rather than being responsible for something entirely myself. Also they've not got me doing production support at the moment, that may well change later though..!

Updated Design

This is the same blog as before - do not adjust your PCs / laptops / ipods or whatever you are browsing this on!

I've gone for a new theme to keep things interesting!

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!

First Week Back

Talking to some people i realise i'm still blessed with great friends / family that are still anxious for blog updates - so i should put some on - especially as the going back to work thing is a big deal - as i've highlighted on here a couple of times.

So the first week is done the days can be summed up as:

Monday - Showing my face - emailing friends - logging on a conference call for the first time in ages - being told about changes within the teams etc

Wednesday - Being told what area i'll be working on and having a kick off meeting for that work - bit of training on the area i'll be working on with via a net meeting remote session thingy + conference call.

Friday - Trying to start work on the project - talking to the guy i'll be working on it with - dealing with IT issues like not having access to certain machines, general 'desk time' of remebering where things are in terms of timesheets, and stuff on the intranet.

In addition to that on Friday night our department had organised some 'team drinks' as two people were joining, two were leaving, and (although it was an after thought tagged on in a later email) me returning was added to the list of reasons for it! I went home about 3ish and then came back in to london about 8pm after a rest and some sleep! It was good to catch up with a few people outside the work environment, and a nice end to the week.

So what did i do this weekend following my first week back at work? Nice bit of relaxation with the feet up?

Anyone who knows me will be thinking 'Yeh right!' - i ended up driving about 600+ miles to Leeds and back over a couple days to help my brother out buying a car!

Overall energy levels for the week: a part of me thought id be FINE going back to work - but after about 5 hours of straight work i did get a headache on the first day. I was quite tired when i got home too - mainly the feet!

I felt well enough to do the Leeds thing - yet on the Sunday when id planned to spend time out and about exploring the north i felt really tired and stayed in watching scrubs instead mainly!

Overall?

Overall the week went very very well - the work on the horizon looks good, and im quickly feeling like the work front is almost 'back to normal' which has helped life in general feel a lot more 'back to normal' - although as i keep saying things will never be like they were before - my life isnt the same anymore, and never will be, but thats not necessarily a negative thing - just a fact.

Newquay 2008 - Pre-Work Holiday

Wanted to share some of the photos from the trip:

   

Work + Newquay

Occupational health were happy with me and discussed the work return - the plan is that i start on Monday and start at 3 days a week - and 5 hours a day - sounds good to me!

CHS appointment was more a chat - went well too - all set for Monday.

I went in to the office and met my team mates and had some good chats about what is going on in my team etc - quite a lot of moving around etc.

Wednesday evening i drove up to Newquay - over 250 miles!

Tursday morning i drove a tank, Thursday afternoon we [Naeem and I] ate at Rick Stein's Seafood Restraurant in Padstow [i think]. Thursday evening was PS3!

Friday morning at 8:30 we travelled via helicopter to the scilly isles and back! Great fun! In the afternoon we did clay pigeon shooting, then KFC, then in the afternoon i packed and came home!

Great trip - brilliantly organised by Naeem - and i'm happy with how the body held up during the whole time - a nice mental break too just before going back to work.

Lastly, i let Naeem drive the Fiat and after driving it he wouldnt let me drive it again! He did about 100+ miles in it and now wants to get one himself!

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....

Knight Rider 2008 on Google Video

Due to popular demand (well, a comment from Raash) i thought id share this URL - i had to download this but now its been uploaded to Google Video you can just watch it online:

http://video.google.com/googleplayer.swf?docId=8287742167739124243&hl=en&autoplay=1

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.