Arif Khan's Blog

The Journey

Knowledge is a fascinating thing - the progress of the human race relies upon knowledge being gathered and then shared and passed on. How does one generation learn from the last, how does one set of people learn from another, how does someone embarking on a journey learn from someone who just completed a similar journey? Knowledge transfer. Teaching. Learning. Contemplating and pondering.

5 years ago I had my diagnosis of Hodgkins Lymphoma and the journey of the last 5 years has changed me. This blog is part of the process of documenting and sharing the thoughts, ideas, fears and hopes that I experienced during this time.

Are the ideas I now think about - things nothing to do with lymphoma - also worth expressing and sharing with others? Now I have almost completed documetning the 'Cancer Journey' should this blog still remain? Does it still hold relevance?

In this age of sharing and networking and the availability of information I feel there is always value in sharing - and so I will make this blog a repository of my thoughts, idaes and feelings.

Will it be of use to everyone? Probably not. But I think (and hope) every single post  will be of use to at least someone and that makes it worthwhile for me.

More coming soon.

ABVD Chemo & Fertility

Both myself and my wife have had several cycles of ABVD chemotherapy. The treatment's impact on fertility is one of the scariest side effects that gets brought up. Hodgkin's Lymphoma patients are often people aged between 15 and 25. I remember discussions around fertility and sperm banking seemed very surreal to me at that time. I had thought about children but some extremely difficult questions were asked at that time. Here's an example of one:

Q: Do you give consent to your future wife/partner being able to use your sperm to conceive a child after your death?

These are not the sorts of things 25 year olds are really prepared for!

Outside the ethical questions just the knowledge that fertility could be impacted was quite scary.

Having said all the above both myself and my wife, despite our chemotherapy, were able to conceive very quickly without any issues.

There are many factors, but I want this blog post to reassure people.

Even two people,who both had ABVD chemotherapy for months, were able to get pregnant twice without any issues.

March 2010 - 2 years back at work

In March 2008 I started back at work for the first time following chemotherapy and involved field radiotherapy.

I got my diagnosis about 3 months in to a new job. It worked out well in terms of private medical care and the excellent support I received, which I would not have gotten from my last company. That was the good part. The bad part was that I had barley settled in to a new role and team when I was then off for six months.

Upon my return I had many challenges and in ways it felt like starting all over again. Again, I was very fortunate that work were understanding and supportive and had a standard 'phased return' programme that kicked in for sick leave as long as this. I had regular meetings with the medical people at work to increase my hours where appropriate and to review things on a regular basis.

I started on three days a week and 6 hours a day - over time this increased - and after 2 months it was back to full time.

Returning to work after this time off for treatment has a number of challenges common to most people going through this. The things you are likely to find difficult or at least worry about are:

1. How will people treat me?

- Will people react to me differently? Will I be seen as strange?
- Will people ask too many questions? Will they not ask any questions at all when I want them to ask some?
- Will I be given responsibility and an equal share of work - or will I be given too easy a time? Will others in the team think I am getting an easy ride?
- Will people be overly sensitive if I say I feel tired?

These are all natural questions. I found that very quickly I slipped back in to how things were before. Everyone was great and welcoming and supportive. I felt like a new joiner for the first week, but after that it was all very natural and it was almost as if I had never left in terms of personal relationships with staff.

2. Energy Levels

- Will I have the strength to get through the day?
- What if I really feel unwell during the day?

Take your time. That is my advice. A phased return is good if your employer can offer it. Build yourself up over time - you may become more tired more easily but if you build up over time the chances of you being able to work effectively are better.

3. Can I still do it?

- After chemo-brain I do not know if I can still perform in my job
- What if I forget things?
- Can I deal with the stress / pressure?

These are again valid concerns - it does take time to build these up. Being off sick for a long period changes your outlook on things. This can be a positive thing, small things will stress you out less, but also it can be harder to really 'care' about if person X gets his report on time or not.

My advice, again, would be to build yourself up and keep in touch with those close to you at home and at work.

4. Emotional State of Mind

- What if I burst in to tears when at work?
- What if I lose my temper - I am a mess after chemo

I felt a bit like this as well before starting at work. I felt I coped with pressure far worse than i did before. There's something called 'Life Confidence' and I think a major illness dents this. With these two items, again, it will take time but it is important to know that those around you will make allowances for you.

5. Career Progression

- Will this hurt my career?
- Will I still be considered for promotions as per before?
- Will I need to prove myself again?

This is a slightly longer term issue but it was one I was faced with recently. Despite my time at the company I felt my job level was not reflecting where I thought I should be. Management did say this was because I had not been given the right projects, or work to demonstrate what I can do. My illness was mentioned as well as a reason for why promotion had not happened and was not on the immediate horizon.

This can be very frustrating, but keep at it, if you carry on doing the things you are doing well then your reward will come. This depends on the company as well - but as a general rule it is true.

6. Other

There are some other much more practical questions as well that arise:

- Will people look at me differently as i have less hair?
- Will people even recongise me?
- Will there be people who do not know why I've been off - how do I tell them?

These sorts of issues do crop up in the first few weeks, and there will be some awkward moments when someone will ask and you will say, and they will not really know what to say next - but not a big problem!

Light at the End of the Tunnel

There is light at the end of the tunnel! A few weeks ago I had my year end meeting and I did get my promotion and my hard work was appreciated and recognised.

In ways it feels like right now, 2 years later, my post-chemo return to work is finally complete. It is the clear tick next to my name and I feel fully out of that period of my life.

If you are able to deliver results you will have your work recognised and you can progress and put your illness behind you.

Emotional Support

It is hugely important to have emotional support when starting back at work. I was fortunate to have good support at work, but more important an excellent personal support network. The most helpful of all those mentioned was my fellow-hodger Rachel - I got to know her just around the time I started back at work - she was so great during that time I married her! (A few other factors went in to that decision as well I should say!)

Lastly, good luck.

Anyone trying to start back at work - my final summary advice: take your time, be patient and build yourself up slowly.

Lymphoma Can Be Fatal

This may seem a very blunt message, and maybe overly so, yet it is something that I've been recently reminded of and something I feel is important to remember for me, and for those who read this blog.

Hodgkin's Lymphoma is the most treatable cancer out there - but it is important to know that people do die of it. There is a cancer support forum that i have been a member of for many years and within the last few weeks there have been two huge loses on there.

The majority of people respond to treatment. I was fortunate enough that my glands showed a 'complete response' after the first dose of the ABVD cocktail. Yet others are not so fortunate. For others the battle starts with ABVD and goes to many other drugs, often leading to experimental clinical trials.

Anyone who has Hodgkin's should be reassured that in most cases it is treatable and cured - yet it is important to remember that it is not that way for everyone. It is sometimes called the 'good cancer' and talked about lightly, due to high cure rates, yet I feel out of respect for those who have not been able to fight it off we should be very careful when talking about it in that way.

Life is fragile. Illness can be fatal. Lymphoma is a cancer and it can kill

Cancer and Fertility - Theory Vs Practice

One of the side effects for the first line chemotherapy treatment used to treat Hodgkin's Lymphoma today - ABVD - is as follows:

"Fertility: Your ability to conceive or father a child may be affected by this treatment. It is important to discuss this with your doctor before starting treatment. However, ABVD is less likely to affect fertility than some other chemotherapy treatments for Hodgkin lymphoma." [Cancerbackup.org.uk]

The standard advice given to men is prior to the chemotherapy to place a 'deposit' at a sperm bank. With modern technology sperm can be stored for decades and brought back later on and used to concieve. I was advised that while ABVD is less likely to decrease fertility this option is recommended and does not cost anything - and is fairly straight forward. Its like an insurance policy i was told - i decided to take the insurance.

The whole experience was strange - within an hour or so i was also presented with some numbers based on an analysis of my sample, along with pages and pages of consent forms. Here's  a taster of the sort of question i had to answer:

"In the event of your death do you consent to allowing your wife / partner to utilise your sperm for conceiving a child?"

This whole thing occurs in the period of time where you know you have cancer - and you know you have months of treatment coming up - but you've not started yet. You are already pretty messed up emotionally - and then you have questions like that!

Also - then came the numbers... i was not prepared for a conversation about sperm counts! I had hoped the sample would be taken and frozen and that was that - but no - they had to check it was a good sample and check other things.

So before i even started any chemotherapy i was told that the counts in the sample were a little low. They were apparently not something to worry about - but i should come back for another couple of visits. To have your fertility brought in to question before chemotherapy had even started - knowing the ordeal that was ahead - was not nice.

What made it worse was my complete lack of preparation for any feedback on this subject on the given day - i had just been told i needed to come back in a few hours to get some forms!

Chemotherapy

Then comes the chemo! Chemo works by attacking cells that are dividing rapidly - this is why it can affect the production of sperm. Stronger regimes of chemo can have stronger effects and some forms can lead to the patient becoming completely sterlie. Pretty heavy stuff to take in at 25 - but i knew my chances with ABVD were far better and things 'should' be ok.

Theory Vs Practice

Well, I had 4 cycles of ABVD - my wife had 3 cycles of ABVD [fertility needs both sides working!] - and many couples with no chemo-drugs involved have issues with having children.

So. There's the theory. The practice? We got married in October 2008 and in January 2009 we found out we're expecting our first child. Wow. Looks like fertility was not an issue at all - in fact if we were in a system where drugs were commercially sold to patients and 'marketed' then i think my case could be used as part of an ad for ABVD - something like 'this couple BOTH had and are expecting their first child' etc etc.

Advice

So if you are stressing about this prior to treatment my advice is to concentrate on other areas. The advice to bank sperm before treatment starts is still good advice - but dont lose sleep over having children post-chemo - it can happen without any issues.

What a difference a year makes..

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

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

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

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

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

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

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

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

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

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

1 Year 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.

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!

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.

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.

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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.

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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.

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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.
 
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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 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!

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.

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!

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.

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.

Post-Chemo PET/CT Scan - Consultant Letter

My Consultant sends regular updates to a Dr at work - he's part of the Critical Health Solutions team looking after my case from work ensuring i get the best treatment etc - so fortunate on that front.

Here is a recent letter that talks about the PET/CT scan:

"Dear Dr G

Re: Arif Khan dob 01/02/1982

Diagnosis: Stage 1A mixed cellularity Hodgkin's lymphoma of right axilla

Treatment: ABVD chemotherapy

I reviewed Mr Khan on 21st January 2008. Clinical examination revealed no abnormal physical signs. The PET/CT scan that was done on 14th January 2008 showed no definite evidence of residual disease in the right axilla but the presence of brown fat with some uptake in level II bilaterally in the neck is most likely to be reactive in nature. The plan for him is to be referred to Dr Bob Philips to have involved field radiotherapy in the right axilla. His PET/CT scan will be repeated again three months after completion of his involved field radiotherapy.

Yours Sincerely

Dr A"

I think that bit of medical jargon in there means that i shouldnt worry about the neck thing. No lumps there or anything and Dr Philips at Parkside also said it was likely a sore throat...

Chemotherapy - 6 weeks on

I've noticed changes since i've come off Chemotherapy - below is a brief summary:

1. Skin Discoloration - fingers and toes were very dark - these are now back to normal
2. Stomach - better appetite, no nausea, sense of taste back to normal
3. Energy Levels - i never felt very tired on chemo but now i feel more full of energy for longer periods
4. Hair - Hair has stopped falling out and started to return quite quickly. I'm still waiting on eyebrows + lashes although they are coming slowly
5. Mood - im more positive - this is due to 1001 factors but being off the chemo drugs and their associated side effects is definately part of it.
6. Waist Line - Eating out is having an effect now! Chemo lead to times when i ate very little, so it balanced out then - need to watch this one!
7. Mouth - no soreness of the mouth

There are somethings i'll have forever - i have a scar from where the biospy was done + subsequent infection - veins on the arms are still a bit darker than normal too.

One side effect is pins and needles in the hands and feet due to nerve damage - ive been told by Dr Philips this takes the longest to heal and often gets worse before it gets better. I get pins and needles in my feet and hands a lot easier than i used to. Its quite mild and doesnt affect things like typing - which would be quite important given what my job is!

Clean PET/CT Scan...almost..

I got the results of my PET/CT scan today. The first thing Dr A asked me was what day i had the scan and if i had a sore throat that day. I knew that was not a good sign!

He went on to say that there was some trace of something possibly around the neck / throat area. He said its inconclusive and can't say what it is - he thought perhaps i had a sore throat that day or something. He said the only thing to do is just keep an eye on it. He examined and area and couldnt feel anything and i too had been checking the other lymph node regions anyway just out of habit - couldnt feel anything in the neck.

So that was the slight worry - the GOOD news is that the right armpit (axilla) area was completely clear on the PET/CT scan - so that is great news.

The plan is to carry on with the treatment as originally scheduled - the next phase being radiotherpay. I am meeting with the radiotherapist tomorrow. He's an expert so i'll ask him for some more info about this PET/CT scan result. Dr A described it as 'some non-specific uptake' in the neck area and whilst dictating a letter to the radiotherapist i heard him say something about brown fat. All medical jargon.

So how do i feel? I'm not sure how to feel. Relief about the armpit - but obvious lingering doubts at the back of my mind. Before leaving i was asked to have a blood test. Next PET / CT scan is scheduled for 4 months time from the end of radiotherapy anyway so I guess that will also be a key one now.

I think radiotherapy will begin within a week or so now and once that starts it will be about 4 weeks before i'm done with it. After that i can start working on returning to work and getting things back to how they were before ... in some ways at least.

Consultant Meeting Date

I just got off the phone to my consultant who said to schedule a meeting on Monday afternoon with him - he said that by then they'd have the scan results. I need to call up the outpatients reception tomorrow and confirm a time etc.

Its likely to be about 2:30pm again as he runs a clinic monday afternoon starting around then.

Monday is the day then!

PET / CT Scan Complete

I had my PET / CT scan today. Left the house about 9:20 and got to the hospital for 9:45. The appointment was not till 10:15 but getting earlier helped as i was able to deal with the admin side of things sooner. Just had to answer some questions and also take some diazepam. After i had the diazepam i was not able to drive for 24 hours so my dad had to do the driving.

After a while i had the tracer injected and rested for 45 mins to allow it to be absorbed by the body. Then it was time for the scan - i had keep my hands above my head for the duration of the scan - which got uncomfortable after a while but not too bad. After that it was all done and i was able to get changed back in to my clothes and leave.

My dad then picked me up in the Fiat and whilst waiting i got some snacks and read today's Times. Interesting article about a university lecturer banning her students from using Google and Wikipedia during their first year....!

The results of the PET / CT scan should be with Dr A by tomorrow i believe and i'll await a follow up appointment with him to discuss them.

PET / CT Scan Date

Got the date for my scan today. It will be on Monday at 10:15am. I've been told that i'll be given Diazepam as well and that i am therefore not allowed to drive for 24 hours. Hopefully i'll get my dad to do the driving on Monday!

Also with the PET / CT scan you are asked to fast for 6 hours prior to the scan.

The way it works is that a radioactive form of glucose is injected in to the body. One hour is then left for the sugar to be absorbed. Cancer cells absorb glucose at a much faster rate. Following this you go in to the scanning machine and the scan lasts about an hour. The PET images will show the absorbtion of the radioactive sugar and thus show where the cancer cells are. The CT imaging is like an x-ray and the two images are then overlayed giving the best possible analysis of cancer in the body.

Last time i had a PET / CT it confirmed that the lymphoma was restricted purely to the right arm pit area and had not spread anywhere else - this time i'm hoping the PET / CT scan will be completely clear. Inshallah.

7th Jan Meeting with Dr A

I've been talking about this meeting with Dr A a lot over the past few weeks. Its been the next thing on my schedule since about December 20th. I met a lot of people over the Christmas period and always talked about it too - so ive been building up to it for a while!

The meeting was very uneventful - Dr A has faxed details to the Royal Marsden Hospital in Sutton for the PET CT scan and asked me to call them back on Wednesday to chase up a date for it.

He said - again - that first we'll have the PET CT scan and the planning of the next phase of the treatment will be done after we get that result. He gave me a quick examination too - checking the lymph node regions for any new lumps i guess - but all was ok.

So - didnt really gain much from that - but hopefully this week i should be given a date for the PET CT scan.

4B - Day 11/12/13

The Christmas period tagged on the end of a very good weekend has meant its been a very good week. Pretty much side effects free right now. I have a complete break from now until at least January 7th. Also other people id want to meet up with are around and off work so times are good.

I have little bits of hair sprouting up too these began just before the end of the last cycle, so definately feel i've turned a corner with things.

Given that i have no hospital trips, blood tests, treatments until Jan 7th I propose to not post until then - so rest assured i'm alright and the gap is just as i'm in a treatment break.

Before i forget - big news of Christmas day - a documentary on Jesus on Ch4 talked about the tomb in Kashmir and even had footage inside alongside an interview with Dr Fida Hassnain.

Clips of it are available at the Tomb of Jesus website here

4B - Day 9/10

Its late Sunday night and its been a very good weekend. A lot of visitors this weekend and ive spent hardly any time at home by myself - which is always good! I've managed to meet mush, rehaan, numaan, muqbool + family + some of his in-laws, ahsan, sultan, aftab, amaar, haris + family, zafrullah sahib, danyal - ive been to several houses and eaten only one meal at home.

Healthwise im over the side effects from the last chemo and this time it appears its going to last - so in a way its almost a return to normality. Due to this i've felt quite happy too so all round its been a very positive and significant weekend.

I really want to go on a holiday of some sort. I have until the 7th of January and i really think i should use it. Hearing about Amaar booking a last minute trip to Cananda has inspired me too! He booked it Saturday and is flying out there Monday morning - now THAT is the way to do it!

4B - Day 8

I had the letter from Dr A today which boosted my spirits, and then went for a blood test too. Leslie called later to confirm the bloods were fine and next time i need to come to hospital is January 7th - so thats will be the longest ive gone without a hospital visit in the past 4 months! The 7th will be a meeting with Dr A - also he'd said something about the PET CT scan being delayed slightly.

I had some VIP visitors today too who brought round best wishes and some fruit too and then in the evening it was a trip to a Chinese restaurant for dinner with shareef + irfan. Really enjoyed the food - company was alright too i guess. It was an eat-as-much-as-you-can deal - not cheap at £20 a head - but you ordered from their menu and the quality was very good.

The roads were covered with fog this evening, it was probably the worst fog ive ever driven in - really dense and it was around from early evening.

I'm beginning to get over the last few side effects of last week's chemo and this time they will - inshallah - stay away for good!

Dr A Letter - 19th December

Work offer a service called Critical Health Solutions and under this there's a doctor who's job it is to ensure i am getting the best treatment and keep up with my medical reports etc.

He requested an update from Dr A - my consultant - and i was copied on the letter too - im gonna share it here - its quite positive:

Dear Dr Girdher,

RE: Arif Khan dob 01/02/82

Diagnosis: Stage 1A mixed cellularity Hodgkin's lymphoma of the right axila diagnosed July 2007

Treatment: ABVD chemotherapy

Thank you for your letter dated 14th December 2007. Mr Khan has completed four courses of chemotherapy which comprise adriamycin, bleomycin, vinblastine and dacarbazine (ABVD) for his Stage 1A Hodgkin's lymphoma. He was diagnosed in August 2007 and started the treatment in September. He has tolerated the chemotherapy remarkably well apart from symptoms of palpitations and chest pain, and he was seen at that time by Dr V, Consultant Cardiologist. He is due to have a PET/CT scan following completion of this chemotherapy and he will then be referred to D P, Consultant Oncologist, for involved field radiotherapy. His only site of disease is in the right axillary area.

I am very confident that Mr Khan will be cured of his disease. I will continue to monitor his general condition on a three-monthly basis. If you require any further information please do not hesitate to contact me.

Yours sincerely

Dr A

4B - Day 7

Eid passed very well today - my brother was over with his wife and kids and it was good family time. The food was of course very good - and my only regret was forgetting to take my daily dose of lanzoprozole until after id had a very rich / spicy lunch! I had some mild heartburn as a result but nothing too bad. I went out for a walk after lunch and it was FREEZING outside. Thanksfully the huge winter coat + hat served me well.

I spoke to my friend Riaz today from UCL - he left a voicemail saying that started with asking how i was etc but then he added that this was the the last time id speak to him whilst he was single as he's leaving for India tomorrow and is getting married! I called him back and wished him all the best and we caught up for a while. I was trying to think of some historic to say to mark the ocassion but never really managed it..

This evening i've been browsing a Hodgkins Lymphoma Forum and ive come across to other people who have HL with blogs. Its been so interesting to compare the blogs. I had written long posts about 'motivation' and in the 20 mins or so i spent browsing the other blogs i found BOTH of them had long posts with the exact same title. It is reassuring hearing of others who have gone through this, even more so hearing about them coming out the other end. There is a mixture, though, of good news and bad and it shwos again how crucial the PET CT scan will be.

I have a blood test tomorrow - just the standard one to check my counts following last week's treatment.

4B - Day 6

Feeling a lot better today thank God, the soreness of the mouth has eased a bit and the discomfort in the chest eased. I woke up quite refreshed generally. I tried eating solids and was ok unless it was spicy food. Hopefully i'll still be able to enjoy some nice eid food tomorrow.

Got to visit mush late tonight and we had a quick catch up session for the past few months or so - he's spent most of his time working on a theatre show in Germany but had some time in Russia as well - although we seemed to spend most of the time talking about Singapore.. but thats just mush being a mush! It was good seeing him after quite a while.

Tomorrow is Eid so it should be a good day - i think everyone has got their stuff planned for tomorrow - hopefully this will be the last major event i'll be sitting out for a while. Its very cold these days so probably a good thing i'll be staying!

4B - Day 4/5

Monday and Tuesday have been tough days - its the mouth soreness that is getting me right now. The mouthwashes can numb the pain, but its feels like i have ulcers all inside my mouth. The slightest drink, say, of some sort of juice and it stings. Trying to chew and eat anythihg is very painful, even talking hurts! I used to have braces for my teeth and this reminds me of what it would be like when they were tightened up.

A constant irritation like the mouth thing also affects your mood as your constantly agitated by it.

Throw in to this the chest pains, which seem less frequent, but stronger and its a bit of a struggle at the moment. There isnt really much to do apart from keeping using the mouth washes, trying to ease the pain and eating / drinking things that are sore-mouth-friendly.

Hoepfully come Thursday and Eid i'll be able to enjoy normal foods - wouldnt wanna miss out on that!

Big news of the day? My very good friend Mush is alive and wants to meet up!

4B - Day 3

Definately finding the side effects to this last dose worse than the others - maybe its the cold weather not helping, and partly it could be psychological too. Ive been quite active and kept busy although this time ive allowed myself to rest a bit more. Mainly its nausea that im getting and stomach pains. The chest discomfort has been there last night and today also.

I need to drink more fluids to help flush the drugs out the system i think - that usually helps with the sickness side of things.

My mouth has been very sore lately too. I had the soreness of the mouth at the start of the treatment with the first dose, but not really had it since. I have 4 bottles of mouthwash given to me for that though so shouldnt be an issue!

December 13th Nandos Pics

A spur of the moment nandos trip - there are photos of Irfan here too but he didnt want people to see him wearing a table-cloth-like-shirt so its just me and the chicken.

Still got a some hair on my head here - quite a big difference to the last photo i posted on here though - but ive seen that was from the 24th October - so to be expected!

I should point out that this was taken the day before the final dose of chemo so i had fully recovered from the previous dose, and as this last treatment was on Friday not Tuesday i had even had a few extra days bonus recovery time.

4B - Cycle 2 - PM

After my previous blog post i went to bed about 3pm. I got up around 6:30. Didnt feel too well then. I had my dose of medicines then; Dexamethasone (steroid), Ondansetron (strong anti sickness), Domperidone (more mild anti-sickness). I then headed over to shareef's and took him to pick up his mobile phone which he'd lost the day before. Some good citizen had found it and called him up to say they had it.

Later on we went to KFC then his place and a couple of other people came over too. It was freezing last night, but i've upgraded my coat to a huge puffy one and had a hat finally too so i was just about ok.

Sleeping was an issue again - the drugs were doing their anti-sickness thing, well supressing nausea, but i still didnt feel well. I think i slept about 4am in the end. Just when i was geting my routine in order the past week or so too! Now the chemo sessions are finished im hopnig i can get in to a better routine.

4B - Day 2

This last dose of chemo seems to have effected me earlier than the previous ones. I felt sick a lot yesterday evening after coming home, and at night thought i was getting the chest pains again - that would be 4 days earlier then they normally show up.

The treatments are cumulative and things are due to get harder as you go along but that was quite odd. Today i'm not too bad, taken my cocktail of steroids, and anti sickness pills and feel ok. I feel quite tired though - although having said that ive remembered i couldnt sleep till quite late.

Its a relief to know that all scheduled chemo doses are complete - this means my veins can have a rest and also within a few weeks my immune system should also start boosting itself back up to good levels. This will coincide with the holiday period so it may be a few nice weeks ahead - after ive gotten through the worst of the chemo after effects for this cycle that is.

My usual pattern is for things to be tough on around day 4/5/6 after the does - that would fall on Eid! DOH!

Treatment 4B - the last chemo...

Well, its all done, and what an eventful day. For some reason i was very nervous and apprehensive about today - as much as i was about the first one. Still not sure why, but i was very much anxious about the whole thing. Yet, it seems Someone up above was ensuring that id have all the support i needed today. It arrived in all forms - from bumping in to a very good old friend from school who'd just qualified as a doctor herself, to the 152 bus arriving before the 213 did meaning when Shareef came to visit he was able to bring me some food when i was really hungry!

I had a variety of texts from people today too, it seemed whenever there was a break in communication from someone then id get a message or a call or a visit! Even leslie the nurse was surprised that i had visits today - i feel truly blessed with having such people around me, and for all the coincidences and happenings that lead to all the various bits of 'support' coming just today when i needed it.

I was due for treatment on Tuesday, but it was delayed to Friday; I had to drive myself to the hospital for the first time; i had to park far away and walk to the hospital - also affecting my timings; and today was the very last chemo session.

I get a headache thinking about how strange today's happenings have been. My friend and I and the nurse all talked about 'fate' - yet all three of us are strong religious people - so whenever we said 'fate' and 'coincidence' it was clear really we meant 'God'....

But hey - people dont talk about God in everyday life really - its not politically correct to do so - so we can use the term 'fate' if people prefer!

Ok, time for some more 24 episodes now - 4 hours left of Season 4 - its been a good one!

Day Before Treamtent 4B

Tomorrow is officially the last planned treatment. I wont be out of chemotherapy tomorrow, i will be starting the final 1/2 cycle. It will be the last planned time to go to hospital and get given the drugs.

I'm sure i'll get side effects next week, but hopefully they will be the finals ones. The chemo will be officially over 2 weeks today.

In the new year i will be having radiotherapy and before that i believe i'll have another PET scan to see how the chemo has gone. It seems like ive been talking about this PET scan for months and months - but then again right now time goes very slowly for me. Each day seems like 3 days at least.

It will be good to get the chemotherapy out the way as it is the hardest part side effects wise definately.

I've been in touch with work last couple days and part of my attention is being drawn back there - going back will present a whole other set of challenges, some of them just as hard as whats passed in some ways.

I'm very lucky and fortunate to work for a company that has specific departments to help with things like this though - i'll benefit from confidential expert medical advice from an in house doctor who is qualified to the teeth and who will have access to my entire medical history and be able to give me completely impartial advice... for free. I've already made use of this and i'm sure it will continue when i get back to work.

Before i think of work, though, we need to be sure that the treatments ive had have done their job and that all is ok to proceed.

Cycle 4A - Day 12/13

I've been well the past few days. Normally feeling well means chemo around the corner, but this time its delayed till Friday so i may have lots of consecutive nice feeling days. Smurf is back in town so met up with him a couple of times - on Saturday we ended up in Hounslow as some odd India take away place that Shareef knew.

I've been really really busy with web work the last few days. On Friday there was a Charity Cheque Presentation Dinner at Baitul Futuh mosque as a follow up to the Charity Challenge i took part in in May. I had to produce a presentation for that - i think in total i spent about 10 hours on that - yet i ended up with a slideshow that ran 7 minutes 33 seconds... such is life!

Had a blood test today (Monday) and not heard back yet - so assume bloods are fine.

Friday is the last dose.

Cycle 4A - Day 8/9

Been feeling better last few days in many ways. Spent most of my time at home working on website items, they never seem to go! The latest site that i was working on was www.islamicfaq.org - that has had its font adjusted and corrected some errors id become aware of.

I tried watching the cricket that was on today but it got very dull and boring. Cricket being played in the subcontinent can be quite slow and dull, the pitches often have no life so once the new ball has gone its a dull affair. With the lack of pace in the pitches the scoring rate is slow too and getting wickets is very hard. So i got bored of the cricket - very unlike me!

The corrado window is fixed - my dad has put in a legendary performance and fitted the new mechanism. There's one more issue - which is the window rubber seal - we've taken it off and hope to knock out some bulges in it - if not worst case will mean i'll have to buy another one. The issue is that as you raise the window up it takes the rubber off! I'm amazed that the window mechanism is in and bolted in place and working etc. I'll have to give my dad some percentage of the sale when it completes.

The chest pains have pretty much gone, which is good news, my stomach has been a bit varied with some discomfort and variable appetite again. Today (wednesday) ive been better - had a very nice omlette this morning and then came to Shareef's. I brought some food from home for him and we also cooked some pies that we bought on Monday. I went with him to his old house (which his brother owns and is being rented out) and collected an old microwave and brought it to his flat.

Shareef has asked me to please write something NICE about him on the blog claiming that my previous comments have been derogatory.

As he is studying law and is bigger than me i am scared of him. In an attempt to avoid him suing me for defarmation of character i would like to make it very clear that he is GREAT and i have nothing bad i could possibly say about him....honestly.

Cycle 4A - Day 6/7

I can't believe that i've managed to keep this blog running on an almost day-by-day basis. You'd think id start skipping days or something. At the end of chemo there will be a break of a few weeks before the radiotherapy starts - definately going to take a 'blogging break' during that time i think.

Sunday was spent working on the Corrado with my dad - he did most of the work, i popped out every now and then to give him some moral support and see how he was getting on. The old mechanism is now completely out and we've seen that the cable in the mechanism had snapped. I got in touch with the buyer telling him that we may not be finished by Monday evening (when he had hoped to pick the car up) - he said that he was in no hurry at all, which is great news. One of the highlights of Sunday was watching my brother Ghaalib make his debut apperance presenting a program on MTA (Muslim Television Ahmadiyya) on Sky channel 787. He did brilliantly interviewing people from young kids to the UK head of MKA UK. Well done Ghaalib!

My chest pains have been around most of the day on Sunday - they have been quite bad too - i've gritted my teeth and tried to get through it knowing there's just one treatment to go...

Monday was spent at home, then having a blood test at the hospital then over to Shareef's. I spend a lot of time at Shareef's - here's the main reasons why i go there:

1. Good to get out of my room and have a change of scenary
2. He has wireless broadband so i just take my laptop round there and its like being at home
3. We always eat well!
4. He has loads of episodes of 'Little Mosque on the Praire' on his laptop that i can watch
5. As he's a student with work to do too being there helps me focus when i have work to do
6. We go WAY back - and he's good company
7. Everynow and then he can even hold an intelligent conversation and say something sensible.. rare.. but it does happen!

Health has been alright today - chest discomfort has eased. No chemo for a whole 11 days for me right now - biggest break ive had.

Cycle 4A - Day 5

Chest pains were in full effect this evening, yet the day overall was good for my spirit. Plenty of cricket in the morning to watch - then i helped my dad out with trying to sort the Corrado window. Then had some relatives over in the afternoon / evening and pizza hut take away with the family at night.

The most fun part was probably eating together with the family and then playing 4 player playstation! We were playing a tennis game, so were able to get 4 people on the court at the same time, although as we were short of a controller Ibraheem had to play on a steering wheel!

From 8pm to now the chest pains have been bad. I've tried a shower and that has eased them but they are quite strong this time and uncomfortable. Hopefully once i get over these i'll just have to face this discomfort once more with the final dose. Time to get some sleep.

Cycle 4A - Day 3/4

Had a quiet few days. The time has been spent resting and thinking mainly. As i come up to the 'crunch' time in the treatment with the end of chemo and the all important PET scan other things in life seem to be also coming up to crunch points.

I've felt very tired on Thursday and spent much time in bed. In the evening i was in bed by 8:30pm - yet couldnt sleep till about 11. Chest pains held off Thursday, yet they are there this evening. I know it will be an uncomfortable night.

I had an email from work today - this time off i've had has been very good for perspective. It allows you to look back and take stock of things. Certainly the biggest time off work i've had since my student life - yet without the associated bankruptcy! Thinking of work is a strange thing. I carried on working up until the treatment began, and that was a strange experience. It was nice being around friends, yet i found it almost impossible to concentrate. I was constantly thinking about the lymphoma.

If after this treatment the scans come back clear then i'll still need repeat scans every 3 months. There's always the chance any of them can be positive. How do you live with that sort of thing on your head? I suppose it could work if you had other long term goals to keep your mind of it - things you were working towards regardless, yet health impacts so many of those.

Cycle 4A - Day 2

Spent the day with Shareef - enough to do in anyone's head.

This morning i took my mum to work and picked her up in the afternoon. In between this i got shareef about 10:45, drove to Islamabad, Tilford, then back. Touched 120mph on the A3 - still need to get a few bits fixed on the Fiat though - dont think the turbo is running at full wack.

The afternoon was spent at my place, then at 4pm we went to see shareef's uncle, then back to shareef's place via some Arab food place - shareef then made an attempt at a wrap / shwarma and we ate that whilst i cracked on with more website related stuff. The MKA UK website and AMA UK websites now have events listed in their calender up to July 2008. Paintstaking - but has to be done.

I'm now quite tired - ive felt some sickness at times during the day but the anti-sickness pills have done their job.

Still at Shareef's - time to go home now!

Cycle 4A - Day 1

Penultimate chemotherapy session today. I was told that the last chemo session will be on a Friday rather than a Tuesday - this means the famous Christmas day end date will be moved a bit!

Dr A came and talked to me today and we talked about a few things. One quote that will help cheer up everyone is that he said:

"I must say you have coped remarkably well with the treatment"

He was also quite surprised i still had some hair - he asked if i could feel any new lymph nodes or anything but i said i could not - the PET CT scan is the one that will really give some answers though - the result of that is absolutely huge to me.

The radiotherapy is due to start in the new year. Dr A asked about if i was planning to go away anywhere - ive not even thought about holidays really. He said he was fine with that.

The drugs were given without issue - Leslie mentioned she'd still not had a chance to watch The Retreat but that was still looking forward to it - to keep myself amused i watched Poirot today - managed to get through 4 episodes!

Back home now and feel fine - although its the weekend when things get nasty it seems. Some more HF website updates knocking around today and plenty of tasks still on my todo list.

Cycle 3B - Day 13

Sunday was a busy day, having stayed up till 4am working on this image collage / video i was then up from about 9ish finalising it and then preparing for someone to view the Corrado. It wasnt till about 3pm that i had everything sorted and could catch up on some sleep - slept for a few hours till about 7ish.

The sleep helped and for the rest of the evening i did some updates on the HF website followed by receiving a visitor then going to bed.

Cycle 3B - Day 12

Overall today was a good day, but it was certainly very very stressful!

I should have been inside resting today, yet i got a call from someone interested in seeing the Corrado today - he was due to come after work - he finished work around 4pm he said.

About 1pm i decided to take the car for a drive to warm up the engine and just to give it a run. During this drive i thought id test out the passenger side window as part as other tests to ensure all was well. During the week the passenger side window had not worked 100% well one night - so tried it today.

It moved down 1 inch then refused to move either up or down!

The rest of the afternoon / early evening was pretty much dedicated to getting that window working before the guy came to view the car! It was very cold too and i suffered from cramp in my fingers for the rest of the evening!

Me and my dad made great progress - following advice from the Corrado forums we traced the fault from the switch - then controller - then electric motor. We've proved that 12 volts is delivered to the motor on the passenger side but that it doesn't move. About 4pm we decided to leave it as is and just put everything back. I had removed both an interior leather panel and also the passenger door card - all had to quickly go back on! I then drove the car again about 5ish to warm it up - the guy called to say he was on his way.

Eventually at 7:15pm he arrives! He examined all the body work with a torch and engine etc - picked up on rust spots and the car needing a new rear engine mount. I drove it up the A3 to the ace of spades roundabout - parked up in the shell - he got to see the car better then - he then drove it back to our house and then we spoke.

He offered me £2,200 on the spot - which i was pretty happy with. I went in and got advice from the family - in the end i told him id like to think about it a bit more. I've paid a bit extra for quite a large ad in autotrader magazine - and that isnt out till Thursday - so i'm trying to wait a bit till then to gauge interest.

I then listed the car on the Corrado forum before heading out to nandos this evening - when i got home i found that within 10 minutes of he adding the car to the forum someone messaged me asking if they could come see the car tomorrow.

i Had already advertised it on there for about three weeks and had NO interest - maybe its my new tactic of not mentioning the millage in the title of the ad and listing all the good parts first!

Nandos was with a nice group - and it was all paid for too. I have a major task to complete by tomorrow morning - it involves going through 10's of thousands of images, chosing about 100 good ones, creating a movie slideshow of these - getting it on a DVD - then ensuring it works ok on a normal DVD player connected to a widescreen LCD TV! I've almost finished generating the movie file - and its 2:40am.. hmm....

Health has been good today though - apart from the cramp - and under some testing circumstances!