Sunday, 28 September 2014

3 years post diagnosis and eyes

Today is the day! Three years ago exactly since I heard those dreaded words and my life changed forever. Although 3 years seems like quite a long time ago, everything that happened is still so clear and vivid in my mind. I still look back and can't believe that it all happened. The 6 months of uncertainty and not feeling like I had control of my life leading up to diagnosis day were terrifying. You know something is wrong. You just don't know what it is or how this will effect your life. The fact it took so long to diagnose was the hardest stage. Hearing the conclusion gives you a reason and hearing about the treatment and battling through it is the solution.

Three years on I've learnt so much about myself and have become a better person because of it. Seeing death's door makes you realise how important it is to take advantage of everything the world has to offer. Yes there may be some blips or hiccups along the way, but life is short and you can't take it for granted. I know I had it relatively easy in comparison to some people going through cancer treatment and there are occasional feelings of guilt.I know there shouldn't be because everyone responds so differently to their own treatment, but these feelings are unavoidable.

Now for an update... A few weeks ago I went back to the Eye Consultant at Moorefields, who last year had told me to come back in year just to see if things had changed. After lots of tests and eye drops, he concluded that the Keratoconus in my left eye had worsened since the last appointment as had the vision in my right eye and he recommended I see another specialist who performs the treatment used to prevent it from getting any worse. That appointment is next week, so I will update again then. The treatment is called Collagen Cross-Linking and involves lots of special eye drops and bright lights... Something to look forward to! After the appointment I felt very dizzy and light headed and thought I was going to throw up because all the eye drops had distorted my vision and made the light seem very sensitive.I did, luckily, manage to make it back to work in one piece!

Sunday, 20 July 2014

Pins and Needles and update!

Hi all!

Sorry it's been a while since my last post! Been very busy but have now sat down to write!
Here's a quick medical update...
About two months ago, I noticed a tingle in my left hand. Not thinking anything of it, I naturally ignored it. I noticed that it was still there, some days, then some weeks later. It felt like post pins and needles, where you get to the numb stage when it is coming to an end... Weird huh?

I asked a couple of people their thoughts and didn't really get anything. I eventually got an appointment at the GP. She knew my medical past and she said that the most likely cause is bruising to the nerve from when I lean on my elbow at work, which is sending tingles to my hand. Being over cautious, so also wanted to send me for a blood test to rule out other potential options. I tried to book one and, of course, it was a really long wait, and I would be seeing my haematologist before I could get a blood test at the GP.

I took the new blood form, along with my normal one to my pre consultation blood test. After some initial confusion from the phlebotomist, she took my blood, filling up 6 test tubes. The blood test felt more painful than normal. I felt very brave.

A week later, I was back in the waiting room, the same waiting room we waiting nearly 3 years ago to find out the dreaded news. The clinic was heaving. I always ask to see my doctor, rather than one of the other doctors in the clinic. He knows me very well. After an hour and a half delay (which is quite short in comparison to past appointments) I was eventually called in and the nerves kicked in. In the past, apart from when I was initially diagnosed, I had felt a bit nervous! Perhaps because of the results of the extra blood test... Who knows?!

It had been 6 months since my last appointment with my consultant and we had a short catch up. He informed me that all my bloods looked good and questioned why I had all the extra tests when he hadn't requested them. I explained the numb feeling in my hand and he assured me that it was nothing to do with the cancer or the treatment. He agreed with the GP that it was likely some sort of nerve damage from the way I lean on my desk at work. He suggested straightening out my arm and not leaning on my elbow... I shall try, but it's very comfy that way! If it persisted, he suggested getting referred to a neurologist. After that, he had his normal feel around for lumps around my neck, under-arms and groin. He couldn't feel anything, which is always a relief!

He was happy! At the next appointment, which is now 6 months away, I will be almost 3 years post transplant. Assuming nothing crops up, from then on my appointments will be annual, as apposed to every 6 months. That was the best news I could have hoped for! Full of relief, I headed back to work!

Thursday, 20 February 2014

Update and 2 years post transplant

In January I had a follow up appointment with my hematologist. After the blood test the week before, which was quite painful in comparison to normal, we were back in that same familiar waiting room. We were eventually called in and for the first time I was quite nervous. I have no idea why! We had the usual chat about what I was up to, whether I'd felt any symptoms etc. He was more than happy with my blood levels and he explained that they were at the levels for any normal person. Me? Normal? There's a first! He also had a feel around for lumps around my neck, stomach, under arms and groin and he couldn't find any, so that was a relief too! He also explained that now I was 2 years post transplant, the chances of it coming back were far less in this period in comparison to the 2 years straight after. That was also really great news! He now wants to see me every 6 months rather than 3, so that was the best news I could have hoped for!

Last week I also had a follow up with my rheumatologist, who I hadn't seen for at least 6 months. Despite her having been the original doctor who diagnosed me, I still enjoy going to see her. She was more then happy to sign me off and was delighted with the progress I had made. However, we rejected her offer, just in case because it is so much harder to get back into the system once you have been signed off.

This week was two years to the day since my transplant began. The transplant consisted of the removal of my stem cells then 5 days of high dose chemotherapy whilst staying in a hotel opposite the hospital until my immune system broke down, meaning I'd have to be admitted to hospital. I can still remember each day and each chemo session so clearly that it still bewilders me that it was 2 years ago!