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Please may I have more bedpans?

Please may I have more bedpans?
February 25, 2016

Two weeks after the final IV chemotherapy of my second phase of induction treatment, my blood count was finally high enough to be sent home the day after my birthday.

In between this treatment and the next stage, I was home for 9 days. Unlike last time, I wasn’t recovering from Pancreatitis and so my time at home was much more enjoyable. During the first few days of being home I felt a little anxious, it sounds quite dramatic but I didn’t feel like I belonged or knew my place in the outside world, which was quite confusing since I had spent the past two weeks longing to get out of hospital.

When you have been in one room for 6 weeks and 1 day (believe me each day is important to note), the outside world seems distant and is almost forgotten. Of course you think of and hear about your family and friends continuing with their daily routines, but in my case I hadn’t thought about myself being in the ‘real world’ for some time. As a Leukaemia patient isolated to one room, the daily routine of hospital life is what you know and what you become accustomed to.

It made me consider what it will be like when the long stays in hospital become less and less, and I am hopefully able to get back into a normal routine. I tried not to think on it too much at the stage I am at in my treatment, firstly because it may be a long way off yet, and secondly because I think it will take some time to psychologically and physically adjust. After a few days these thoughts and feelings did wear off, but they were and still do linger in the back of my mind.

I spent the time at home catching up with friends (eating out far too frequently), shopping, and I even managed to get to the gym, albeit a very timid ‘work out’ but I got my trainers and active wear on. I felt IMG_6124very well in myself and so wanted to make the most of the time at home. On the Wednesday I wanted to get out for a walk, and ended up at Virginia Water Lake, a favourite of mine.

This is where I had previously walked with friends and their dogs on many occasions, and run the 4 mile loop (sometimes twice) countless times. It was a beautiful crisp winters day with clear blue skies. I found it extremely therapeutic walking on my own, taking in the fresh air, and admiring the stunning views of the lake. I was very tempted to put my trainers on and attempt to run part of it, but thought better of it being on my own and having not run in 3 months, I did ‘jog’ up a few of the minor hills just to see if I could, safe to say that I could manage it, even if I was a bit more wobbly than usual. You just can’t beat the a good walk to blow the cobwebs away and clear your mind (although I say this about running too so maybe you can).

On theIMG_6113-1 Sunday we were waiting to hear if they had a bed for me as I was due back in for the next stage of the treatment. This phase is very different to the previous two, whereby the treatment usually runs over just one week. So having packed A LOT lighter than usual, my one bag and I headed back in. On the Monday morning I had my third bone marrow biopsy, which indicated that the second induction phase had too been as successful as the first phase, with no Leukaemia cells shown in the sample, which therefore means I am still in remission. Which was comforting to hear, though I am fully aware that this does not mean that I am at the end of my treatment, remission does not mean cured. It took me by surprise that you could be in remission after only 3 months of treatment, I guess my knowledge of time taken to reach remission has been based upon different cancers, and it is naive to generalise something like that.

On the Tuesday pm they started me on IV fluids of around 3200 ml administered over 14 hrs, which I later learnt that this was the first of many. Before starting the high dose Methotrexate they need to ensure you are fully hydrated and that your pH level is over 7, and continue to monitor this throIMG_6101-1ughout. The magnitude of fluids given result in many trips back and forth to the toilet, which I did not appreciated throughout the night, getting up 7 times to pee, but at least we know my kidneys are working well for now! I also feel bad for the nurses having to come and get my pee on average every 40 minutes!

The Methotrexate (IV chemo) was started at midday on the Wednesday and ran for 24 hrs, finishing today at 12 pm. I started to notice the burnt tongue feeling soon after the Methotrexate was started, which I had experienced before, other than this I have felt generally very well (so far so good). The next stage of the treatment involves calcium folinate rescue, starting at 12 am, and given every three hours for the first day which is then reduced each day. I believe the calcium folinate rescue reduces the toxicity of the drug and protects your kidneys. The level of Methotrexate in my blood is then monitored from tomorrow onwards, once it is low enough the fluids and calcium folinate can be stopped and I can then go home for a week. I then come back in the following week and do it all again.

Though it seems like a lot of information, I like knowing the specific details about each treatment. Firstly because the medicine and science behind it all genuinely interests me, and secondly to have a good idea of what is going on, specifically when everything relies heavily on timings. A friend who has been through this process advised me not to be scared to invest in your treatment, solid advice that I would pass on to anyone undergoing any treatment. Hopefully the doctors and nurses don’t mind my questions and see it for what it is, a genuine interest. One of my doctors kindly offered to print out the full treatment regime for me, which I really appreciated, and means I can follow the plan with them for then next few days.

In the time between this round and the next, I will have a clinic appointment here at QA and I have a scheduled meeting over at Southampton to further discuss the potential of me having a stem cell transplant, though from what I can gauge I’m pretty sure it is a yes. Though I am a little apprehensive about it, it will be good to finally know, clarify the next steps of treatment, and may hopefully allow me to confirm some social events I have been holding off on.

Quote of the day

“Strength does not come from physical capacity. It comes from an indomitable will.” Gandhi

December 11, 2015

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