Subway Sandwich

I have managed a few more walks over the last week and even an outing to some local shops where I sat down and enjoyed a subway sandwich for lunch. This was my first such outing for quite a while - certainly since my hospital stint. Although it felt like a big effort before going out, it wasn't too bad and I enjoyed it a lot. I am planning a couple of similar trips with Patti in the coming days (we go when we think things will not be busy).
My family have adjusted well to all the various changes over the last several weeks and are now well used to having me spend so much time lying down. Evening meals continue to remain a challenge for me as that is when I am at my most tired/uncomfortable -I never quite know how dinner will go. Nevertheless we as a family are coping.
Thanks again to all those that have contributed to the trust.

My Little Walks

In the last week things have continued to remain stable. The days generally start off well with a sleep straight after breakfast and end with the evenings being a bit of a struggle, both from an energy and a pain/discomfort point of view.
I have managed to venture outside a few times and have gone for some short walks around the block (a very short block it is too - maybe 200m). The energy is there and I could go further but I am not pushing things. My little leg muscles do find it hard work, especially coming up the stairs, but I manage.
I went to see the specialist yesterday and he confirmed things are stable. He even described the tumor on the back of my neck as feeling more like a cyst now, which I think is good.
We are still adjusting to me being retired and the connotations of that. Thankfully the trust has been there to help out. I notice there are some more fund raising efforts currently underway and my family and I are very grateful for these.

More Of The Same

Another week has just about gone by and things have pretty much remained unchanged. Although no two days are exactly the same, they are pretty similar, so I generally know what to expect. One thing that does seem to have changed a bit is my eating pattern. Dinner is often harder to deal with as my discomfort levels are at their highest towards the end of the day. However, my lunch has extended to about an hour long grazing period where I eat a variety of things over a longer period of time. I think a lot about food and I am often hungry which I take as a good sign. I also seem to be able to tolerate a wider variety of foods which is also good. That said, I am still pretty cautious about what I eat.
There is not really a lot more to add - the drugs are slowly doing what they are meant to do and I just need to be patient.

Another Week

I realise it has been a week or so since I updated my blog. Things have been pretty stable (a plateau phase) for the last week or so, so there has not been a lot to say. That said the last couple of days were not the best as I had a lot more discomfort and have found it difficult to eat much in the evenings. I am of course still very fatigued and my brain does not let me sleep too much during the day (my brain just won't turn off and I end up thinking about all sorts of things rather than relaxing).
I have been having weekly blood tests that track, amongst other things, my hemoglobin levels. After my blood transfusion in hospital several weeks ago my hemoglobin levels have been steadily going down, and I was expecting to need another blood transfusion next week ( which would have been a huge physical drain on me just getting to the hospital). However, the blood test results of yesterday have just come back and my hemoglobin levels are now (just) higher than when I left hospital. I take this as a huge bit of good news as it means my body has kicked in and started to produce it on it's own. I needed that bit of good news - it has given me a nice physiological lift.
On another note, I would like to sincerely thank all those that have contributed to, and continue to contribute to, the Pullan Family Trust. It has made a huge difference to my family and I and has helped ease the financial stress of the situation I am in. Thank you all.