I’m back, but where have I been?
I keep asking myself that question? What’s actually happened over the past month or so?
I know I blogged a few times in May, but truth is I don’t remember doing many of them. They’re my reminders as well as your updates.
They call the day you get your Stem Cells returned Day Zero. I understand the reasoning now (on day Plus Twenty).
It’s not only the first day of the rest of your ‘new’ life, but it’s also the start of something that they described as brutal and that certainly has lived up to it’s billing.
I’ve been home for eight days now. After more than two weeks in isolation, and around three weeks in hospital.
I should have felt elated. On a high. Buzzing.
But I’ve felt flat. Depressed. Tired like never before. Worried that I’ll never get back to ‘normal’ – if I even remember what that actually means.
Yet I also realise how lucky I am. I’ve had a transplant, but I’ve not had major surgery. My Scottish Government colleague and social media cancer buddy Fi Munro has also been bravely blogging her traumatic experience battling Stage Four Ovarian Cancer.
What she’s been through in past few weeks gives brutal a new meaning. I bow before her positivity and fortitude and take inspiration from her determined outlook on life. If you are ever feeling crap then give her amazing blog a read and you’ll realise what hanging tough really means.
Where am I now?
Like I said, I got ‘released’ last Monday (30 May) as my vital numbers (especially neutrophils – the part of the blood cells that fight infection) were showing good signs of recovery (they’ve since dropped back a bit…)
That was day Plus Fourteen. Before that I’d had my Stem Cells returned in a surreal sci-fi process involving dry ice and big flasks (see pics below).
I’d stopped eating. I’d pretty much stopped functioning. I had zero immune system (the chemo had killed it off). I was getting blood transfusions and platelet transfusions on a daily basis. I was constantly on a drip, had a separate morphine machine attached (with a dinky wee handbag), and was often hooked up to the oxygen line – all very Holby City!
I managed a whole one of the snacks I’d taken in – a sticky ribs Pot Noodle which was revolting. Otherwise it was daily feeding via an Intravenous bag called a Total Parenteral Nutrition. I lost almost one and a half stones when in hospital, and have lost another half stone since I got home. So there are some positives!
As expected, one of the drugs heavily affected my throat and oesophagus and left me feeling like I was swallowing glass just drinking water. It’s still not totally cleared up but I’m ok with still drinks.
Taste buds are still completely shattered and my appetite is only slowly returning. That, for me, is particularly tough. I’m forcing down a kiddy-sized portion of cereal and not much more than a young teen’s meal at night, and not a lot else. But anything is good as nothing means readmission.
My two biggest problems at the moment are total fatigue and an allergy to my platelet transfusions (which, typically, are the ones I need most!).
I have literally no energy at the moment. I’ve suffered a lot of leg muscle wastage, and my lungs feel like the size of walnuts. It takes all my effort to climb the stairs or to walk to the end of the garden, but I think I see progress, even if it’s small amounts each day. I’m also quite sleepy during the day though I’ve managed to cut my naps back a bit.
The platelets are a big concern though. When I was in hospital, despite pre-medding me with lots of Piriton and steroids, the transfusions brought me out in lots of hives, multiple itchy rashes and once a very swollen eye (like my worst hay fever reactions of past).
I now go in to get blood tests three times a week (Mon, Wed, Fri) as an outpatient and have needed platelets twice in three visits.
Last Friday I came out in lots of hives and rashes and had to stay on a few hours to let them die down. Then on Monday, within 5 minutes I went from fine to full respiratory emergency as my breathing became very badly affected by the transfusion and I had nurses and doctors all over me attaching me to Salbutamol nebulisers and Oxygen Masks as well as pumping me full of antihistamines and other drugs to try and get my breathing back under control.
I’ll admit it was a scary experience. I really was struggling for breath and coughing quite violently. I’m told it was similar to an asthma attack. When you’ve already got no energy boy does it take it out of you.
It also leaves the medics with a dilemma. They can’t keep giving me platelets if the reactions are going to be severe. But platelets I need.
Apparently there’s another option: specially ‘cleaned’ platelets from the wonderful folk at the Scottish National Blood Transfusion Service. As it’s likely to be the plasma that the platelets are in that I’m allergic to, they’ve got a way of ‘cleaning’ the product to make a reaction less likely.
I’m back in tomorrow. Wish me luck!