Arif Khan's Blog

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.