Arif Khan's Blog

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

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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 15: End of Week

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

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

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

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

Week 15: Things get stressful at work!

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

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

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

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

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

Week 14: Back at Work

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

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

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

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

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

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

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

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

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

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

Any ideas anyone?

3 Month Post-Treatment CT Scan

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

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

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

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

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

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

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

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

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

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

Week 13: Out of the Office

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

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

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

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

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

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

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

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

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

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