Clots All Round

9th June - I woke in the early hours and my whole bed sheets were covered in blood! Obviously I panicked like crazy. I had blood all over my face. It turns out in the night I had had a horrendous nosebleed. Because I’ve been on blood thinners, it was obviously worse than a normal nosebleed as it takes far longer for clots to form than normal. The nurses wiped up my face and changed my sheets. I know it’s only a nosebleed but I was bloody (haha) terrified when I first saw it!

After a shock first thing, it was lovely to see Caroline for lunch. She brought me in a very nice lunch. She brought French bread, kettle chips, couscous and then scones with clotted cream and jam! After eating hospital food for so long, it was a real treat!

Later that afternoon, I had a Skype session with Amy. Skype is so brilliant as it was like Amy was there in the room with me! All we can’t do is hug....

My arm that has the PICC line in is getting more and more red around the dressing and also becoming more puffy. Really hoping there’s not a DVT in there!

10th June - This morning Amanda, Paul, Rob, Sarah and Chris visited. Was lovely to see them all. We had a good chat and then we went into one of the many hospital gardens and sat in the sunshine.

In the afternoon Mum and Col visited and we spent time chatting and some more time in the sunshine.

P.S. Caroline, Clarke family and Mum & Col, not calling you clots! Just thought it was funny 😜

The PICC line

I am woken early and told I am about to be taken down for an operation to insert a PICC (Peripherally Inserted Central Catheter) line. I am barely awake and for a while through a hazy fug I fight with this doctor about this. I know I react badly to anyone putting anything in my veins. But basically it’s tough shit. The nurses are going to be giving me daily IVs (tbc) and taking daily bloods. They need to do this somehow and a PICC is the best way rather than a daily stabbing. The PICC is allows bloods out and treatment in so it really is the best solution. I agree and am wheeled to theatre carrying Recky to squeeze throughout the op.

Once down in theatre I am warned of the risks: The PICC line can move out of position if it is not secured in place (with sutures). There is a risk of vein clotting (thrombosis) or vein inflammation (phlebitis). You may get an infection at the insertion site or in your bloodstream. The PICC may need to be removed and you may need antibiotics. I sign the consent forms.

I am then prepared for the op. They remove the old cannula. The docs clean my arm, and use an ultrasound machine to find the deepest and best vein to use. One doc injects my arm with anaesthetic and it fecking hurts. I grip Recky as tightly as I can with my other hand and squeal with the pain. My veins are so bad but luckily the doc gets the big bugger needle in first time to get the line in place. The other doc finishes off by doing an xray to make sure it’s all in situ perfectly (which thank goodness it is!).

If needs be the PICC can apparently stay in your arm for 12 months 😮, average is apparently 6 months. I’m only prepared to keep this in whilst I’m in hospital. It’s flappy and annoying. It’s restrictive and if when I’m out I’m not having IV chemo then why do I need it in. Whilst in hospital I’ll need the dressing changed at least once a week and a regular flush through.

Michelle comes to see me but I am fast asleep, she leaves some goodies for me and disappears without waking me. Bless her. I wake up to an awful smell, the woman in the bed to the right of me has shat the bed.... It really smells 🙈

 My arm begins to feel bloody sore already.

The temporary tape holding the PICC in place is really itchy but they have to leave the PICC uncovered for 24 hours after the op just to monitor it. 

Laura visits that evening and I am a bit more awake and talking than I have been before which is cool. She tells me about her cool visit to the USA and some exciting exploits she got up to! I remember really liking her jacket and weirdly I dream about it that night. 

Onwards

28th May - I am on Tilgate Annexe, I have been pumped full of so many painkillers and god knows what other things I am totally out of it. I remember being showered and it feeling wonderful. I remember Hayley visiting. I remember her bringing me crappy magazines and talking to her from my bed but I literally have no clue what about - sorry mate!

*Edit* I found out today 13/08/18 when I was having lunch with my friend Luke, that he came to visit me on this day too. I have zero recollection of him being there but apparently he was! Sorry Luke! xx*

I am given strict instructions to rest and recover. I am not a patient patient, I want it all now. There are falls, with big bruises, my legs won’t work, I have swollen up with fluid from where my organs stopped working, I have the fattest ankles and right arm. There are tears, and many many, many, many excruciating bouts of pain. I have weird dots all over my feet, like bizarre red marks. They take a while to disappear. I am started on steroids (dexamethasone). I bloody hate steroids, they give me severe insomnia, they make me act like a different person, they make me feel like I am high, I really, really dislike them.

29th May - The docs have been taking bloods from my cannula that was inserted at some point during the ITC period. They are thankfully going to stop using it soon as my arm is getting too swollen, itchy and sore to keep it in for much longer! 

Ouch!

30th May - I literally have zero feeling in my right leg. I try and put weight on it and I cannot feel anything, it is so weird. How on earth can I go from scaling cliff tops with Rob in the Isle of Wight just a few weeks ago to this. It is so bizarre. My legs and ankles are swelling more and more, I hate this. I just don’t understand why on top of everything I cannot now walk. I am brought a walker but at the moment it is totally pointless as I cannot do a single thing with it. Actually, with Rob’s help I do manage some kind of dragging shuffle to the toilet once. I am bloody determined though, I am not leaving this hospital until I make this sodding leg work again. Because of this I have a spine MRI which thankfully shows no cord compression.

I also have a repeat echo on my heart which shows a perocardial effusion of 0.3cm. So there's still some fluid there. It will have to be monitored to make sure it doesn't increase.