I’d like to extend a huge thank you to everyone who read the previous post and sent me feedback. It’s greatly appreciated.
A word of warning: if you’re squeamish about needles, you might want to give this part a miss.
On Wednesday 16th July, I went to hospital as a day patient for an infusion of Infliximab (or mouse juice, as it shall now be known). I was more anxious than usual, feeling agitated and worried sick about the needles. This feels like a huge step back after all the progress I’d made so I was pretty annoyed at myself!
I’ve always had terrible veins. They love playing hide and seek. As soon as the nurse presses on one, it disappears, not to be seen again. I’ve been asked if I even have veins! And if nurses are lucky enough to find a vein… There’s no blood. Seriously. I sit there whilst wondering how on earth this is possible? Am I superhuman? Possibly. But I haven’t discovered any superhuman powers yet.. I live in hope.
I digress… On my last stay in hospital, I was used as a human pin cushion. No fewer than 11 attempts were made to stick a needle and cannula in me. All but the last one failed.
Prior to this, I’d actually felt like my veins were getting better as the nurses at the Infusion Unit had been successful the first time.
So… I was waiting on the ultra-comfy reclining chairs (thank you, NHS!) when I was called to the ‘hotseat’ at the front and I explained my fears. I showed them my ‘good vein’ which we’d had success with on previous occasions. It betrayed me, the traitor. 4 attempts, cold spray, a tissued vein and 4 hours later, I was done with the infusion and allowed home.
I must praise the NHS here – the hospital certainly knows how to look after it’s patients! They ply me with refreshments during the 4-hour stay.
It’s been a few days since the infusion and the exhaustion is slowly wearing off.
I’m hoping that this infusion lasts a few weeks at least. The last one lasted a paltry 2 weeks and I was still made to wait 8 weeks for the next one. So that was six weeks of pain, a LOT of bleeding when I went to the toilet – it terrifies me. It’s not fun. It’s very painful and I need to get to the loo in time, otherwise…. You get the gist – as well as extreme fatigue, feeling moody, spending most days in bed, having to change carefully-made plans and trying to be strong for the sake of my family.
It does sound pretty awful but the truth is, I’m not complaining. Allah is sending me this test because He knows I can handle it with His help. And inshaAllah I’m being rewarded for every moment. I hope and pray that they find a cure, but you won’t find me asking: ‘why me?’ Because I have complete trust in Allah. He always has a reason. Alhamdulillah.
I have one more infusion to go before surgery, which should be in September inshaAllah (God willing). More on that later.
My Ulcerative Colitis (UC) is pretty bad at the moment, which results in pain and leaves me unable to sit down for longer than a few minutes. I’ve been given Tramadol painkillers, which are helping but they’re pretty strong. I was completely out of it the first few days. Everything was so lovely, relaxed, calm……. I was so smiley. Yep, they made me high lol. I’m getting used to them now, they just make me feel very mellow.
I’ve faced my share of problems because people think I don’t ‘look ill’. Just last week, I was at a talk, when one of the older ladies told me to get off the sofa and sit on the floor with all the girls.
Me: I can’t sit on the floor.
Me: (wondering why I’m explaining myself and how I’m supposed to say that if I sit on the floor for any length of time, it feels like I’m sitting on knives) I had an operation.
Lady: Did they operate on your leg?
Lady: So then?
Me: (getting really quite annoyed at this point) I had my large intestine removed.
Ha! Sometimes the shock factor is needed. I appreciate it when people are concerned but asking for the sake of nosiness is not on.
That’s all for now… Thank you for reading my blog. I look forward to receiving your comments, feedback and suggestions.