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BMT + 10

  • wills627
  • Dec 30, 2017
  • 5 min read

Haem: 76

White: 0.0

Platelets: 28

Neut: 0.0

Weight: 65.0kg

So I have emerged again after a few rough days. I never thought I could get so unwell that I couldn't even sit in bed and type a couple of paragraphs - but that is how it has been. I really haven't wanted/been able to do anything. I have woken up each morning, with the mindset that things are going to better today, and maybe for an hour or so have felt OK - and maybe trying to psych myself up to get up and have a shower, but then the shakes kick in and I am wrapped up in bed trying to warm up, as my temperature starts to rise again.

Even getting up to go to the toilet is an effort - and it a fine line between making the decision to go... I have 4 machines running on the IV pole that has to accompany me. 3 pumps and 1 x PCA. All are plugged into a powerboard (thank goodness) which I remove from the wall. Then it is a matter of stringing up the powerboard, and then turning off the alarm on each of the machines as they are screaming at me. Then remember the dosage button before I start wheeling towards the bathroom. So, you can't leave it to late to make the decision to go - as you need to add a few minutes for the 'prep' to get there. The worst thing is that often I think I just need to pee, but once up the body is telling me something else and that I need to hurry!

I have been NIL by mouth for 2 days now. I'm not really feeling hungry in any way but my stomach did start rumbling today. I understand with the chemo that I am apparently shedding the lining of my stomach and GI tract which I can only guess is what is coming out with the diarrhea! Today it got worse - which is not quite what was planned - it was supposed to be slowing down.

I am happy not being force fed down the NG tube. I have been stubborn enough to swallow any capsules. Unfortunately the tube has had to stay in so I have this thing still attached to my nose and side of my face - and still hate it.

Mouth is sore but not too bad. If I am just resting and not talking then my pain factor is minimal. However, my throat is a lot sorer. The PCA does help to take the edge off the pain a bit.

One of the pain specialists visited yesterday and told me to use the PCA more often! I said I didn't want to be the patient they were all talking about but was assured I have probably only used about a 1/10th of what anyone else would have used. So, instead of letting the pain get so great and then pressing the button, I am pressing it a bit earlier and that seems to work a lot better in keeping on top of the pain.

The first really bad day of the mucusitis and NIL by mouth (30th +9 day) I suffered from a horribly dry mouth - and when the said NIL by mouth, I didn't know how I was going to moisten my mouth without some water. I got some biotene and as yucky as it was to try and move this gel around my mouth it worked a treat! Then today, it was the opposite problem where I had too much saliva and spent the day trying to clear my throat as it feels like where the throat hurts that there is a bit of a lump where there is saliva pooling. However, possibly I have a bit of bleeding in my throat as I have spat out saliva only to find it somewhat red with blood. Tomorrow I have another dose of Methotrexate which is what contributes to the mucusitis so things possibly getting worse before it gets better.

Speaking of blood - I have had that much taken from me. Over the last 6 days I have had blood taken from for blood cultures which involves blood being taken from each line (x 3) plus blood taken directly from the vein. The last time this was done I noticed the gauze they had put over the needle site was drenched with blood so realising that I am not stopping bleeding now. The other side effect is bruising - so if the needle site doesn't continue bleeding externally then it continues internally and I see the evidence a few hours later.

One 'benefit' of the PCA is that I feel a bit 'spacey' and tired so today slept most of the morning until about 1.30pm. When I say 'slept' that means being woken all the time with machined beeping and lines being changed etc.

The other thing making me 'sleepy' is the anti-nausea medication that gets injected directly into my belly. This has been available to me if I have asked for it, but once again, normally I wait until I have thrown up or feeling REALLY nauseous, and by that stage it is not as effective. After a visit from the Palliative Care Dr, she has suggested it be scheduled regularly morning and night and then I can ask for it between if I want. So, yesterday, I left it too late and threw up again. So one day of no vomiting ( a bit of heaving though) but overall this getting a bit better.

And finally, my backside - the PCA helps take the edge of this pain but as obsessed as the Dr's and nurses are with my mouth pain - I wish they would consider the pain that I associate with what it might feel like to sit on shards of glass. Once again, started feeling worse today. It had been suggested yesterday afternoon that I could try a stronger cream but yesterday they missed the pharmacy open time to get it up that night. I chased the Dr's up again about it during the consult, which was in the morning today) but still had to follow up with the nurses when by 6.00pm I still hadn't seen it. Then it arrived, but it was the wrong one, so I think it was about 8.00pm before it finally arrived and I got to apply it about an hour later. Let's see if it works.

Wishing everyone a Happy New Year, but I hope by midnight fireworks, I am having a deep peaceful sleep.!

 
 
 

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