15th May - Why I need to Blog

Hi everyone,

Am very new to the world of Blogg's but hopefully it will all flow along easily enough.

I guess first I need to introduce us, I am Lizz am 37 and work as a teaching assistant in a local primary school, Jon my hubby is a firefighter oh and hes also 37 but for 2 weeks a year I enjoy him being my toy boy as I'm older by 14 days. We have 2 sons Rob aged 12 and Chris age 8. Were your normal average household, happy always short of cash and full of energy esp needed for walking our crazy dog Gemma.

The reason I need to do this blog is to help make some sense of why my hubby, my hero, my best friend has been struck with Cancer! and our journey through the recovery which is only just about to start.

Firstly I would like to give a bit of a hint on how we came to be at the stage we are at now, awaiting Chemotherapy to start next week.

At the beginning of April 2007, Jon told me he could no longer sign his name, well we kinda laughed this off, we put it down to at 37 years old, and technology you don't write so much these days everything is done on a computer, yes even firefighters paperwork is done on a pc, so we basically ignored it....

We then went on a beautiful weeks holiday in Scotland, Jon kept falling asleep when ever he sat down in a chair... not uncommon when relaxing on holiday, and chasing around playing football with the kids, so again we ignored it.....

After our holiday, when out walking the dog one day Jon tripped down the curb, I berated him and told him to pick his feet up, this happened again, and again, it had been a long day, Jon had been to work and we were having an evening walk, we ignored it.......

Finally, I was cooking one of my awful meals, actually they are not too bad but as you will hear later Jon prefers hospital food, I was cooking Spag bowl, am busy eating away when I notice that both the boys plates are nearly empty but hmmmm Jon's is still full, "don't you like it?" was my first thought then I noticed Jon's fork and spoon (he likes to twirl his spaghetti) were totally stationary, thats when I saw the worried look on Jon's face and he told me he couldn't move his fork round on his spoon... I DIDN'T IGNORE THIS...

After a quick call to NHS Direct, we took him to the local hospital, who did some neurological movement tests with him, all we found out that eve was he had a weakness down his right side, with it being a Sat night they felt he would be better sleeping at home and visiting A&E again the next day for a scan.

Looking back now we both realize how small Jon's writing had become, and realize that maybe we should have taken a bit more notice of things earlier.

Oh apologies for the next bit being a bit date by date but One reason to write the blog was to remember what happened when for any information needed at a later stage. Be ok once Im blogging things in date order will flow easier.

THE JOURNEY BEGINS:

14th April 2007 : Jon visits hospital (found weakness in right side, needs further tests.)

15th April 2007: Jon's admitted to the local hospital for observations and to book a CT Scan

After more Neurological tests, they now rule out a bleed in the brain so opt for an MRI Scan over a CT Scan this cant be done today.

17th April 2007: A.M : the MRI Scan is taken of Jon's head.
P.M : Results are given to us, the virus we had been thinking this was was now announced too us as two brain tumour's, our world fell apart. The reason for Jon's lack of hand writing is they think part of the tumour is pressing down on the brain nerves which gives people the effects of Parkinson's disease. This may improve with steroids given to reduce the swelling.

19th April 2007: Jon is transferred to the John Radcliffe hospital, fantastic hospital here they kept Jon in for observations and booked him for a biopsy.


26th April 2007: Long awaited biopsy finally takes place, Jon's been on steroids for a few days and is constantly hungry, and loves the hospital food, 3 course meals twice a day!

27th April 2007: Jon is discharged for good behaviour and allowed home until the results come back.

8th May 2007: Finally the day arrives, we have wanted this day but not wanted it, we sit in a room clasping hands to find out exactly what it is Jon needs to battle.

This is the point the room spins when the doctor gives us the name of Jon's illness

Jon has a Large B-Cell Lymphoma, at that time we are told treatable but not curable. Time seems to stand still, this cant be happening to us, Jon cant have Cancer, it happens to other people, but deep down we knew this might happen, and anyone who knows Jon will know how calm and un-flustered he can be, we ask plenty of questions and get looked after wonderfully by the staff at the hospital. The journey home that day was tough.

9th May 2007: Royal Berk's Hospital call for Jon to be admitted for some more tests tomorrow.

10th May 2007: Jon goes in for some tests. He's given a room on his own, were told its a clean room, that has positive pressure so only clean air gets into it.

11th May 2007:Today he has a Bone Marrow Biopsy, and a Lumber puncture and a body CT scan. Oh and more blood tests which they seem to do daily at every hospital.
Yay Jon's allowed home for the weekend.

14th May 2007: Back into hospital, it really is starting to feel like a second home, today Jon had a Hickman line put in (this is a line into his chest for the forthcoming drugs to be given to him). After an X-Ray to check the line is correct we are allowed home for the week, Jon must stay free from people with colds or infections but should enjoy some quality time with the kids as the next few weeks are going to be a long stay in hospital.

Again apologies for it lacking fun but this blog is to help free up the scribbles on my calendar of what happens when on our journey, hopefully now I will keep this blog updated often, I'm not sure anyone but close family or friends will follow this journey but all are invited to help us through the times ahead.