Wednesday, 1 December 2010

Now that's how to travel!

By the time I left Australia I was extremely ill.  My blood counts were low and I'd lost nearly 10kgs, at nearly 5ft 11 being 58kgs was not good, I looked like Crazy Legs Crane from the Pink Panther Show.  I was so thin I was just all legs!

Anyway, because I was so ill the only way I could fly home to the UK was to fly Business Class.  It cost me $4000 for a one way ticket and it cost my Mum a fortune to upgrade her ticket too, but to be honest it had to be done I was not going to get to the UK otherwise.

To be honest even though I was really ill Mum and I were really looking forward to flying Business Class, neither of us had travelled that way before.  I turned to Mum in the Qantas Lounge and said ' we can't show ourselves up when we get on the aeroplane, we've just got to act like we fly like this all the time, so no screaming and no ooo look at this etc'.  So we agreed to play it cool.

We boarded the plane, the first thing I did was shout 'oooo look at the bed' and took a photo of myself lying in the bed with my phone!!  So much for playing it cool!  I also phoned J excitedly to tell him what it was like, it was a good distraction for us otherwise I probably would have been crying my eyes out leaving Australia. 

The other good thing about flying Business Class was the food. I was on steroids and had a huge appetite, I basically didn't stop eating for the 24 hour journey.  I practically ate everything on the menu.  Eating helped to pass the time as another side effect of steroids was insomnia, so I was awake for the whole 24hour journey!!!

My brother met us at Heathrow and he drove us home to Swansea.  On the 4 hour drive back to Swansea, I had to ask and explain to my brother that he might have to be a bone marrow donor for me.  Not typical driving conversation but best to prep him!

We arrived in Swansea on the Sunday afternoon and lots of my family came to the house, we drank tea, ate cake and everyone was really supportive.  All I knew was I had to phone the hospital in Cardiff the next day and take it from there. 

Wednesday, 17 November 2010

Ok maybe it is Lymphoma

So off we went to the hospital, not knowing our life was about to dramatically change.

Our hospital experience started off with a 9.5 hour wait in A&E! Yes we arrived at 2.30pm and I finally got seen by a doctor at midnight. Basically it was winter out in Australia and Swine Flu had hit in a big way, the waiting room was full of people with really bad colds thinking they were dying from Swine Flu. Awesome!

So I got admitted for the first time on 17th July 2009 and basically the next 2 months was spent in and out of hospital having tests and being told 'it's not Lymphoma but we don't know what it is, whatever it is it's rare'.

I got more and more ill, I wasn't so much in pain but I was having incredible fevers, I've never felt so cold in all my life but I would be running a temperature of 42c. I wasn't sleeping well during the nights as I was having terrible night sweats and waking up soaking. I was exhausted.

They wanted to biopsy an enlarged lymphnode but they decide it would be a very risky operation to take one from my abdomen as my spleen was so enlarged they were worried it might rupture. Not a good idea!

Luckily a lymphnode on the back of my neck decided to grow to the size of a golf ball, so mid August they whipped that out.

While all this was happening my Mum was getting more and more worried back home in the UK, so she decided to book a flight and she arrived in Australia in the 2nd week of August. I had kept some details from her as I didn't want to worry her. Unfortunately while she was on her flight, I got rushed into hospital to have a blood transfusion. So Mum arrived early in the morning after a 24 hour flight and J brought her straight to the hospital I was not looking good it has to be said. What was the first thing my Mum did when she saw me? She told me off for losing too much weight and being more ill than I'd let her know,. I was trying to protect her but she had an almighty shock when she saw me.

So I'd had the biopsy and the node had been sent off for tests. About a week after, I was in hospital having some sort of infusion, when Prof F came in and took me and Mum aside in to a little office. He said we should now brace ourselves that it could be Lymphoma, a shock but nothing was definite.

So me, J and Mum carried on back and forth to the hospital, still nothing definite but again whatever was wrong with me was rare!

I had pleaded with the doctors to do something as I was feeling terrible the night sweats were wearing me out and the fevers were just awful, so they decided to put me on steroids. After a few days on steroids I started to feel a bit better and my appetite came back with a vengeance.

Finally they had all the results in and it didn't look good, I went to clinic to see Prof F. The 3 of us sat there while Prof F announced I had Anaplastic Large T Cell Lymphoma, an aggressive form of Lymphoma and I needed to get started on treatment immediately. What a date to get diagnosed 09/09/09, not that I'm ever going to forget that day but what a date!!

My response : Oh fuck! Oh fuck! Oh fuck! Oh Fuck. I think I carried on saying that for about 5 minutes, I didn't know what else to say.
J and I had always said if any family in the UK got seriously ill we would move back immediately and when they said it might be Lymphoma we'd already discussed that it would be best to go back to the UK.

So I got diagnosed on the Wednesday and on the Saturday Mum and I flew back to the UK, leaving J behind to get all our stuff packed up and all our stuff sorted. I left him in Sydney airport and I didn't have a clue when I would see him again or what was ahead of us.

Thursday, 11 November 2010

So I'll start at the begining.....sort of

So there I was enjoying life living and working in Sydney, Australia when Cancer came into my life like a hurricane.  Shaking everything up and leaving devastation in it's path.

Life really was good, my boyfriend J and I had moved out to Sydney in 2006 with his job and we'd fallen head over heels in love with the lifestyle Australia was giving us.  I found the perfect job, we had great friends, we played tennis, went running and we got to spend hours and hours in the ocean snokelling, surfing and swimming.  Oh and the weather was glorious! 

We'd started planning our future, we both wanted to stay in Australia and start a family.  We were going back to the UK in June 2009 for 2 weeks as I was going to be a bridesmaid at my cousin's wedding, so we  decided we would start trying for a baby when we got back from our trip.  Very exciting and scary!

It was great being back in the UK and seeing our families and friends.  We had a hectic schedule as we were only home for 2 weeks and we wanted to see as many people as we possibly could.  The wedding was fantastic but 2 days after the wedding I started to get back pain.  I just put it down to sleeping in different beds, so I just popped painkillers and said I would go and see my physio when I got back to Sydney.  I did have one night where I was hot and sweaty but I just thought that was because of the pain, little did I know!  The pain was getting quite strong and the thought of a bad back on the 24 hour flight back to Sydney didn't seem like much fun so I went to see a chiropractor, he cracked me and I felt OK again.

The flight was fine and I wasn't in much pain.  We arrived back in Sydney on the Wednesday and we both went back to work on the Thursday.   I felt like crap but put it down to jet lag.  Then during Friday night I woke up shivering, J and I decided I should go to the GP in the morning.  Yes Saturday and I could go and see a GP, nice one Australia!

My GP prescribed anitbiotics just in case it was a Kidney infection and told me to come back Tuesday if it didn't improve.  It didn't improve.  I went back and she sent me to have a CT scan as I was told before I had a small kidney stone.  So the next day I arranged to have a CT scan in my lunch break.

The next day I woke up and didn't feel great so I called work and said I wasn't going to be in that day but I should be OK by tomorrow.  I took the scan results to my GP at 11am.  She looked at the results and said it looks like it could be Lymphoma, as my spleen was huge and there were other enlarged lymphnodes in my abdomen.  The GP then went on to tell me she had a few friends who'd had Lymphoma and they were fine. I was shocked but didn't think she was right as my spleen had been enlarged for a few years due to an immune conditon I had so I wasn't worried.  The GP and I decided it was best if I go and see my Immunologist Prof F so he could decide what was really wrong with me.

So off I went and phoned J in work to say get yourself home we're off to the hospital to see Prof F.

To be continued..............

Well everyone else is .......

Every since I was diagnosed with Lymphoma last year everyone has been saying I should start a blog because no one will believe what I've been through.  I thought about it but I was too bloody ill to do it and if I'm honest I don't think I'm that good at writing, I'm more of a numbers person.  Anyway, since I've been on Twitter I've started to follow people who have been through similar to me and have been blogging and it has really helped me to read their blogs, so last night while trying to get to sleep I thought 'why not'.  So here's my first blog, not very interesting I know but I've got so much to say I don't know where to start!