Monday, 30 June 2014
Step 4
While I was in hospital I had some stem cells taken not on the Wednesday as initially planned but on the Thursday, worked out quite well the counts were incredibly high, a record high for them, this year at least but I'm still waiting on my trophy. Instead of taking about three hours over two days which was initially the plan they got it all done in two and a half hours. In which time a pile of students from America came in to see the machine and I got to watch the nurse struggle explaining exactly what it done. Wasn't an unpleasant experience at all.
I was kept in hospital until the Friday when my temperature seemed to settle and they were happy enough for me to go home. Of course the next day I woke up with a temperature. Over the month of June I have been constantly getting temperatures and fevers and night sweats and worst of all my cough has been getting worse and worse although mostly in the mornings, but not only in the mornings. A couple weeks ago once it started getting sunny it got extremely bad which makes me think that a bit of hay fever is still there and during the night makes my nose run down into my lungs cause the cough and my lungs to tighten up. Once I was coughing so much that it made me sick although a bit of that was down to me letting myself be sick.
One of my review trips to hospital after a week of being out they wanted to keep me in again, which I didn't. It wasn't the main doctor and someone that hadn't seen me for quite a few years and he obviously wanted to do things "by the book" so they were going to do blood cultures, CT of my chest and put me on antibiotics and said if I was at home the CT could take months to come through if I wasn't an in-patient, I refused. He went to talk to another doctor and came back and said about pointing forward our points for and against, he went first and blah blah blah, cultures, CT, infection... then my turn, we've already done this 3 or 4 times the cultures have came back clear, the cough has been ongoing for a year and as soon as I leave the hospital it comes right back again. And so I went home with some antibiotics and back in a few days. Of course when I went back they were wondering why I was there and were happy with everything and when I was with the proper doctor later in the week he basically ignored the cough and temps and has just put it down to the lymphoma as each time I'm off the chemo it comes back right away, he said there would be no point continuing with any ESHAP chemo as it didn't seem to do too much and it came back anyway. Also that day (20th) I got my PICC line removed and got speaking to the nurse in charge of getting the Hickman line in, which will be on the 3rd of July a day short of the anniversary of my initial diagnosis, and she is in charge of getting me into the ward, so any time from then, or maybe even that day I will be going in for the month for Step 5.
The Sunday after getting the line out when I was having a shower I noticed that my hand was red/purple, was hard to tell in the light and also a bit swollen and tired. Thought initially it may have just been the vein not being used of the amount of blood flowing through it, but the next couple of the shoulder was starting to get sore and also mostly in the mornings when I was waking up or it waking me up being the case on the Tuesday, the veins also looked like what you would see in the films when someone's just been poisoned, but just on my right shoulder. Because of this I went to the GP as I knew if I went to the hospital the odds would be drastically increased that I would have to stay in, but while I was at the GP they wanted it checked out for a clot and so had to go to hospital anyway. All day was wasted there waiting for blood results coming back, which didn't really matter and then they decided at near 4 or so oh let's book an ultra sound which the GP had sent me there for in the first place. It came back clear and they sent me home with some Clexane to be injected each day and back again in a few days to make sure my arm hasn't fallen off.
Thankfully by the time I had to go back the arm was still there and had the evidence too they seemed happy enough but wanted to give me more Clexane until I was getting my next line in and while I was waiting on the script they gave me some magnesium to bump them levels up a bit. So the next visit to hospital will be for the Hickman.
One of my trips earlier in the month to the GP was to update them on what was happening as I wasn't sure at the time if I was going to be able to call in when I needed my new sick line and they wanted to see me before then. During this after telling him what was going on I asked him about a rash that has been developing on my arms, it's basically every place that an needle has broken the skin in the last five, six, seven years, or maybe more but it each spot was coming up in a red lump, which no one else seemed to know what it was but the GP informed me it is lichen planus, a skin trauma, but it's not itchy or sore so he and me is happy just to leave it as it is. Over the last week the redness has died down and lots and lots of wee tiny lumps have all come up on my arms, still he was not fussed when I seen him again today for my sick line.
For my sick line I went to the GP again today and he asked if I wanted it made out for 6 months, was a bit shocked by the length of this and I know I will probably be off for that long but knowing for a fact I'll be off for that long I wasn't too keen on so I said 3 months would be enough.
Excluding the football that about sums up the month, until next time.