Having felt a bit rubbish the last few days my mood did pick up considerably earlier and I was back to my more chatty self for a while!
I had my two doses of chemo in the morning, one of which I thought I’d put up a photo of as it is quite an unusual bright red colour…
It turned into a really pleasant day so when my cousins arrived at the hospital we escaped for lunch on Southampton Common. I really enjoyed getting a trip out into the fresh air but have been shattered ever since as the chemo has definitely kicked in!
My next dose is on Saturday so I am just waiting around now to see if I can grab some more time at home when that is done.
Before I go I just wanted to say a quick thank you to the people that sent me an email through the blog after my last post, it was a real encouragement to hear from you and all of the support is really appreciated!
The bad news is not too bad so don’t worry!
The ward rang this morning and they want me back in on Monday because my platelets went up (which I was very surprised at!) After this time at home which has been (and still is for the coming weekend) filled with lovely friends and family moments it is going to be boring and lonely being shut up in hospital getting needles prodded around my back and starting chemotherapy again.
Today Gracie and I went to the art and craft walk in Bosham, which I am assuming most of you locals know about! It’s so adorable with all of it’s tiny shops and cute cafe, but we were there for another reason. Doodle and Daub- the pottery painting place! It was great as they got us started then left us alone upstairs so we could get on with painting and chatting away. I really enjoyed it and am very annoyed that I can’t fit more of that in while I am home, it was perfect as there were only about 13 other people in the whole two floor building the whole time so I didn’t have to worry about picking up a cold from someone. Most of you will know that I am terrible at art- I somehow managed to bluff my way through 3 years of it in high school and used stick men in any notes made on drama performances! This is why I was pleasantly surprised with the bowl that I decorated (I will admit it wasn’t my idea- wonders of the internet and all that!)
The colours will come out much more brightly once the pottery has been through the kiln, so we are looking forward to seeing them!
I thought if I put my counts in when I know them it might make more sense than when I suddenly drop in a random number and interest you to see the pattern so Thursdays bloods were:
Hb (haemoglobin/red blood cells): 98
Platelets (make the blood clot): 81
Total White Cell Count: 4.5
Neutrophils (immune system): 2.6
That’s all for now,
New form of entertainment: watching the men on the roof opposite. Who are they? What are they doing? It’s all very thrilling, really.
I am very happy to tell you that I have felt very good for the last two days! I’ve been more awake and despite being taken off the 24 hour anti-sickness pump I feel fine! The most unpleasant thing at the moment is peripheral blood tests and taking pills.
Today I found out exactly what has gone wrong to prevent the lumbar puncture. After the doctors tested all the clotting factors it became apparent that there was nothing wrong with them. This stumped them a bit and apparently Charles even said something along the lines of “I don’t understand, I’ve never seen this before”. So next thing you know they are on the phone to a SPECIALIST in LONDON! I am that difficult that they need a specialist! (we always knew I was special… just not in the way we expected… I jest).
Anyway… According to Heather my doc explained what was happening and that they had no results to show what was causing it and he said straight off “has she taken peg asparaginase?” (referring to one of the chemotherapy drugs that yes, I have taken), and he used his specialist knowledge to explain that asparaginase leaves an enzyme in your body that attacks the cancerous cells for a few weeks. That’s the normal bit.
Now to the part where I become even more weird and wonderful.
I happen to be the 1 in 100,000 people who reacts to the enzyme, and the form of the reaction is that it messes up my clotting. And voila! Now we know the root of the problem!
My levels are “on the fence” now, I am on the borderline between ok and abnormal, so the doctors were deciding then whether or not to go ahead with the LP or whether it was too much of a risk. The consequences could be a bleed into my spinal chord and that is not something we want- loss of sensation and use of my legs would not be appreciated.
Have now been told by doctor Tom that it should be fine to go ahead with the Lumbar Puncture on Monday (AT LAST!)
The LP is not really imperative chemo, it’s used as a preventative method- putting in a drug that inhibits the growth of any funky cells in my spinal fluid which is why it is OK to move the dates around or miss a few if it can’t be helped.
Had a lovely visit from some close family friends, some not so lovely guitar playing from Ed (using his ukulele chords on my guitar and attempting some dodgy power chords) and later I am seeing some good friends from church so today has been a very interesting and rather good day!
I just had my second non sedated bone marrow test- it went fine! Thanks for all the prayers and thoughts, I know they are what is getting me through this all so smoothly!
One part of it was more uncomfortable than my previous experience but like the machine I am I said he could just power on- handled like a pro if I do say so myself haha!
So tomorrow I have my last dose of Vincristine, which marks the beginning of the last week of treatment in the ‘Induction’ phase. In this last week will they be tapering off the steroids and I don’t have to have the other drug Danorubicin. I can’t believe the first segment is almost over!
After that week ends it is a waiting game; waiting for the results of the bone marrow test to see what the next treatment regime will be and monitoring to see if my levels increase enough for some time at home before the next phase called Consolidation starts.