Day +111: Goodbye October, hello new life...

Well it's been a while again since I've blogged a decent update but at least I've been tweeting!

October was a mixed month in that the first 4weeks (long month) were great - being home helping out etc. but the back end was a nightmare.

Fundamentally that was the reason for "going dark" both in terms of keeping in touch but also mood and general well being. Basically I spiked a temperature and that meant I had to go back in to hospital on to the ward, I think it may have been triggered from the hip biopsy I had on the 16th October.

Frankly it was depressing after being back at home but the temperature came down quickly thanks to strong antibiotics and I was able to negotiate going home after just one night's observation so at least I was home Sunday evening.

However, the antibiotics combined with suspected mild GvHD meant lots of diarrhoea. This lasted probably a week and a half in total and as you can imagine was incredibly debilitating, humiliating, tiring and depressing to be blunt.

The depression was quite bad and really it was the patience of Sarah, kind words from my Dad plus various messages and calls from people that came in out of the blue and generally thinking about all the folks that have been routing for me that saw me through.

THANK-YOU ALL!

On the plus side, I learned though through talking to the hospital staff that:

1. TBI causes extreme lethargy that can come back and haunt you
2. Fatigue affects coping mechanisms you may have developed
3. Steroids cause mood swings

Being the analytical/engineering type sort, this was actually great news for me to hear as it helped me understand my depression and the dark thoughts I was having during that period.

Hopefully this information is of use to others then to help them when they're feeling blue, even if you are generally healthy - tiredness is a problem:

• Take time out & relax
• Find time for yourself, re-focus and start again
• Talk to people, be open & honest and rely on the support of friends & family you trust
• The world will go on either without you for a day or two or with you working at a reduced pace

Anyway, back to more positive matters. Things have settled somewhat and as mentioned, about 3 weeks ago I had a hip biopsy performed (under sedation as you might imagine!!). Yesterday I received the full results from the test. Essentially there are 3 levels of test:

1. Visual under the microscope, crude but showed things looked quite good
2. FISH test, a genetic test that was looking for the Philadelphia +ve gene that added complications to my leukaemia. The result from that indicated that things look good
3. Molecular test - this is the most in depth test and showed 0% leukaemia cells

Essentially it looks like the intense treatment and the prayers & positivity from you means I am now in remission!!!!

Obviously this still needs to be monitored, biopsies will be conducted every 3 months, I am still on a lot of meds etc. but this is clearly amazing news and hopefully gives comfort to others that all of the above can work if you keep the faith, follow the professionals' advice, take your meds etc. and generally try and get on with things as normally as possible (i.e. being positive).

So I just wanted to let you know, thank-you all and obviously ask you to still keep me in your thoughts(!) so that this may continue and I can start real recuperation now.

I probably won't be be blogging anything significant from here on in, as to be honest I find that doing stuff around the home, helping Sarah with copious admin, staying on top of work/personal e-mails and of course helping with the boys is starting to turn full time again and quite tiring!!

I will be tweeting the usual mundane stuff about hospital visits etc. :-) but will include general updates on status etc. as part of that. Plus geek boy that I am will likely start turning some attention to interesting (well to me anyway) technology & gadgets...

Any please stay tuned if you can, thank-you again, love and peace to you, your families and all.

Chris.

Sausage & Egg McMuffin

OK - this is getting an obsession but hopefully it will ease pretty soon...

Part of my treatment is to take a pretty substantial amount of steroids everyday, many side-effects (my thighs and biceps have really shrunk) but biggest thing is HUNGER!!!

You may have noticed a couple of references to McDonalds in previous posts, I wouldn't say I'm obsessed but I do like it once in a while but one of the biggest things that has driven me to distraction is that on hospital days we get up early, I have enough breakfast to take some of my meds - the stronger stuff I wait until I get to the hospital as there is usually a wait from us arriving to the Day Treatment Unit opening - but every time to the hospital we drive past a McDonalds on the London Road:


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just as I get ready for "second breakfast" (yes, I know this officially makes me some kind of Hobbit) and because of how my taste buds are (again from the tablets), a massive urge for a Sausage & Egg McMuffin takes over.

Unfortunately, it's not allowed as I'm supposed to be off fast-food and takeaways because of the neutropenia - there is an excellent document that people should be aware of as to how to protect themselves, whilst at the hospital I was surprised seeing people eating salads which although are obviously healthy for a normal person, contain bacterial risk for those with no/low immune system.

Anyways - at the hospital there is a canteen where I can get something that helps stave off until lunch time and allows me to take the rest of the medication.

Tomorrow (Friday) is my last day of full blow steroids, after that I will be tapered off of them to allow my body to adjust to the withdrawal - it will be interesting to see how that affects things.

A "cancer free weekend"

So following on from the General Progress update, I'd get it off of my chest the more personal side to this last weekend.

Firstly, I want to make it clear that I am extraordinarily grateful to everyone for their love and support - I do not take it for granted and indeed draw on it as my reserve for when things are low; I just don't want the following to be taken out of context or misconstrued.

With the physical effects of the chemo (nausea, fatigue) came a general depression and a whole feeling of being thoroughly fed up with this whole thing - stuck in the house and mainly the bedroom, not being able to help out, missing the lovely weather & going out as a family, not popping into a cafe or McDonalds for a little treat, even washing the car, DIY or grocery shopping.

Also, for 4 weeks now, so much focus has been on me and people asking how I'm doing it all got too much and it just made me want to scream!

Like I say, I don't want to sound selfish/ungrateful but ordinarily being quite a private person I just felt so overwhelmed and wanted to get away from it all to the point where I just didn't want to talk about it to anyone and tried to deflect questions back to the other person as to how they were doing and what's new in their life.

I wouldn't call it denial of the situation but I think it was just my general coping strategy to try and take more control and be "normal" again.

The other thing I tried to do was set myself some little goals to aim for - as Sunday was Mothering Sunday in the UK, I made an effort to get up early with the boys and bring Sarah breakfast in bed and the cards/presents they had made. It gave me a great deal of satisfaction to do that one small gesture but again helped make things feel normal.

It seemed to work for me as well as talking about how I was feeling to my Dad and to Sarah, the worse part was trying to explain to the boys why I was feeling the way I was but they are resilient and seemed happy to go off and play and be boys that it wasn't so bad (I hope).

Anyways, that's that off of my chest - physically I feel better today, yesterday I learned that what I experienced was to be expected and so feel brighter again.

Bottom line I guess is that we all have a dark moments of doubt, depression, despair - everyone is different but for me figuring a coping strategy as quick as possible, sticking to it and being open & honest with those that you love and trust to share your feelings and concerns seemed to work for me.

Of course, knowing so many people are rooting for you and doing what they can too is always in the back of my mind and helps enormously - thank-you!

The Anthony Nolan Trust

For those who don't know about it, The Anthony Nolan Trust was founded back in the 1970's and through the pioneering and visionary drive of the founder, now operates one of the largest register of donors in the world and through connectivity with other national registers now offers access to over 11 million donors worldwide.

Getting down to brass tacks, Bone Marrow Transplant is the only viable option for long(er) term survival, so I've been doing a little research myself tonight and working with some fantastic friends to try and drum up support for getting a slighltly better chance on tissue typing.

If you are interested in joining The Anthony Nolan Trust Register, more details can be found here.

Taking the news...

I'm not a deeply religious person (I'm a lapsed Catholic I guess) so I'm not intending this particular post to be profound or anything like that - in fact those who know me will probably see this as part of my general pragmatism! Here goes...

To be honest, I knew something wasn't right when I was asked to go to Wexham Park - having to go to hospital for a follow-up on the blood test made me suspect something was coming and when I arrived at the Eden Day Unit, I knew something BIG was coming owing to the number of posters around the place indicating support groups for things like Lymphoma.

Mentally/sub-consciously then I think I was gearing myself up for significant news and so when the diagnosis was confirmed I actually felt huge relief that the ailment was at last identified as it completely explained all of my symptoms and made me feel "normal" in that the weird nose-bleeds, feeling tired and achy were not necessarily down to stress, over-exercise or me being an idiot but there was actually something really wrong!

In all honesty I didn't find the news difficult to take - partly because of the above, partly because the medical staff were extremely professional and didn't beat around the bush in presenting the news and partially, I feel, owing to my "let's get on with it" nature; as far as I'm concerned, we know what the problem is so how do we go about fixing it?

At the same time though I'm not pretending that I was unemotional about it, being faced with your own mortality brings things into acute perspective and there were tears especially when I saw how the news was affecting my wife who was able to come back from work by that time - it is easy to forget how the news impacts others in a situation like this.

My main breakdown though was the thought that this was something I was going to pass on to my children - the thought of me tainting their lives preyed heavy on my mind and it was an enormous emotional relief when I was told that this is not hereditary (in either direction) - that helped me open up, from that point on it was "right, what's next?"

So all in all, in a very strange way, this seemingly total random event has actually been good for me; strangely I feel happy again - it has slowed me down and brought me closer to family, friends and even my faith. It has helped me realise what's really important in life - little things like making and hearing your children laugh and having the genuine love & support from amazing friends and family.

I feel blessed therefore that this will ultimately be a genuine life-changing event.

There are numerous examples/models of dealing with change management (as people I've had the fortune and pleasure to be their manager or mentor/coach well know!), but one I've just found seems to be the root research the The Kübler-Ross grief cycle


I think throughout my life/career I've been very fortunate to move on to the acceptance phase pretty quickly, maybe I'm daft in not spending more time on the other phases but as far as I'm concerned, things are what they are and you have to make best of the situation - I'm sure others have differing opinions, please feel free to comment!

Everyone is different though and people will of course react differently. However from my perspective though, I just want people (especially immediate family) to know that I have never felt angry about this or that someone or something was to blame - my philosophy is that energy is far better spent on looking to the positives and focusing on how to move things forward.

I believe Positive Mental Attitude is key and I want to thank friends, family & professionals for the awesome support being shown to help maintain this.