A challenging end to the year

Hello Everyone,

I hope wherever you are in life, this post finds you content and with some inner peace.

I’ve had a very long day of hospital appointments. I started with my 8th session of ECP at Guys. Today was day 2 and yesterday I explained to the fantastic team that I was due to move on to Kings after finishing on day 2 and I had another 3 appointments. They were lovely and moved my appointment with them forward by an hour. All kicked off well at 11.30 and despite only one of my tubes (lumen) working, it still all ran smoothly.

I left there at 2.15pm to get to a 2.20pm appointment at Kings. I am pretty resourceful but even I can’t cross London that quickly. I did well though to get there and in the Chest Unit for 3pm. They did their tests and I huffed and puffed in their machines as instructed by a trainee in good humour. It makes such a difference when people are jolly.

Then I went down to Haematology. After 17 years of attending the department, it’s like a 2nd home to me. I brought them some Christmas cheer, as I did in ECP too. They were all very pleased with their tower of biscuits, cake and chocolate. It’s always a good thing to acknowledge and say thank you when people do a good job even though it’s difficult at times.

By the time I saw the lovely Carmel (doctor) she already had access to my lung function test. It seems my lungs are only working at 45%. This is a 20% reduction from last year and indicates GVHD is in my lungs too, as well as all the other places. What this means in more medication. Sigh. At least I’ve got an excuse for being out of breath and don’t just have to put it down to being unfit!

Then we went through my blood results. My red cells continue to drop and I’m very likely to be in need of a blood transfusion soon. If you have always thought of giving blood but haven’t got round to it, now might be a good time to take the plunge.

My liver results are a little better while my kidney results are not so good. The white cells and platelets are as expected and no worries in that department.

Next we discussed my recent bone marrow biopsy and what the results could mean. Carmel explained that my bone marrow cells are 100% Gail’s and that’s a good thing. For someone of my age my marrow is still hypocellular. This means there are not as many cells as there should be in my marrow. I’m not worried about this as I’ve had empty marrows in the past. Carmel then said that the cells were still Dysplastic looking. This means they are still large and not regular looking. This could be because of one of two things. Either all the toxic medicine I’ve taken, and/or currently still take could be impacting on my marrow and making it look out of sorts, or there is still an element of MDS lurking around. Only time will tell which one it is. They will keep a close eye on me and treat and react according to findings.

I then had even more bloods taken to look at what’s going on. The good news is I’ve been given a whole 4 weeks gap before attending Haematology again. I still have ECP after 2 weeks but at least there is a bit of breathing space.

The Appointments continue throughout this week. On thurs, which is my lovely little life saving sisters birthday I have to swallow a capsule endoscopy. That means starving myself from midday tomorrow for 30 hours apart from the disgusting medication they give you. What joy!

My final appointment of the week is Friday when I see a podiatrist due to a recurrent infection in my toe. Maybe then I can concentrate on Christmas.

On Saturday I’m going out for a lovely treat with my big sis Dawn and Will, little sis Gail, Jeff and Jess and my daughter Annie and the grandkids. At least there is something nice to look forward to.

I got home just after 7pm today after all those appointments. A long day with some mixed blessings.

Throughout my appointments today I tried to get into the Christmas spirit. I was wearing a hat that moved and played music and I had flashing lights wrapped over me whilst enduring the rigours of ECP and bringing some smiles to all I encountered.

It seems the NHS are going to need to keep hold of me for a little longer. Thank goodness for all the loving support I have and the fantastic healthcare professional I have surrounding me. I wish you all a very Merry Christmas.