What happened to May?

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…)

20160607_134427

My daily blood count numbers etc since Day Zero. Haemoglobin, White Cell Count, Neutrophils, Platelets and Transfusions. Note Days 5 to 8 when my immune system was non-existent.

 

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.

20160606_142053

After the Oxygen Masks but with blotches and rash still going strong!

 

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!

A x

Advertisements

About Andrew Slorance

Husband, father, son, brother, cyclist, pen pusher, pedant, contrarian , fights Mantle Cell Lymphoma in my spare time.
This entry was posted in Uncategorized. Bookmark the permalink.

20 Responses to What happened to May?

  1. murraymeikle says:

    Good luck Sloppy. And congratulations on winning top prize in the Sam Galbraith lookalike competition.

    Like

  2. PIERRE HELIAS says:

    Good luck Andrew! My best to you.

    Like

  3. bobbyronnie@btinternet.com says:

    Andrew

    Good to have you back.

    Bobby

    Sent from my HTC

    Like

  4. wbheigh says:

    Andrew,

    Good to hear from you and can’t believe what you’re going through. NHS is amazing!

    Good luck!

    Willie

    Like

  5. Peter Peacock says:

    My brother went through a similar stem cell procedure and it was clearly pretty hellish. That was 17 yrs ago, he has travelled the world since and he was back in Hawick this week visiting family. When there myself last week I saw an old rugby photo of your father from semi-junior days in an old Hawick News. Keep up the good fight and every best wish. Peter Peacock

    Like

  6. anna says:

    Good luck!!!xx

    Like

  7. Lynda says:

    Good luck from me too. X

    Like

  8. Barbara says:

    Good to hear from you Andrew. Sorry it has been so tough though. Hope you get good results tomorrow. Take care.

    Lots of love

    Like

  9. Erlend says:

    Good luck tomorrow. As an asthma sufferer the salbutamol and oxygen remind me of childhood asthma attacks. But you’ve had mountains more to content with. Great to hear about the progress though

    Like

  10. Sheila Thomson says:

    Drew I know with being there myself how low a point you can get to. I too had my immune system wiped out and often felt like you are describing.Nobody really understands unless they have been in the same position,but because they are giving your body such an onslaught it is normal to feel the way you are feeling.The tiredness is also a weakness which really floors you.I decided through the darkest days that I must keep positive and plan in your head what you are going to do with Louise and your lovely kids when you are feeling better think on the good things in life which will happen as the body does recover.I felt they almost kill you to give you the best chance of recovery!but it will happen so when you feel like shit,keep going and stay strong! You will win this battle as I did much love to you all SHEILA XXXXX

    Liked by 1 person

    • Stephen Marvin says:

      This line resonated with me SO much, “I felt they almost kill you to give you the best chance of recovery!but it will happen so when you feel like shit,keep going and stay strong!” Brilliant.

      Like

    • aileenlamb says:

      Sheila – I totally agree. They did almost kill me too, but almost 4 months out from Day 0 I know that it will have been worth it……although it still doesn’t quite feel like that some days!

      Andrew – you will get stronger and you will look back and realise just how much progress you’ve made. You are getting through this pal – just keep on keeping on.

      Liked by 1 person

  11. Natalie says:

    Sounds absolutely horrible. Every time I start to react to one of your posts whatever I write seems totally inadequate. I truly can’t begin to imagine what you’re going through, but I admire your courage and determination.
    Natalie from Brussels, Belgium

    Like

  12. Margaret says:

    Sounds like you have been through the mill, Andrew. Stay strong. M xx

    Like

  13. Carolyn.Rae2@gov.scot says:

    Best of luck, Andrew. I hope that all goes well today.

    Carolyn

    Like

  14. Jane says:

    Stay positive Andrew…………….hard though that must be when you are feeling like you have been through a concrete mixer, twice or thrice!! I am sending positive vibes for you and hope that they get the platelets problem under control. Looking forward to your next blog. J

    Like

  15. Stephen Marvin says:

    Good to hear you’re feeling a bit better. I, too, lost May, but I don’t want to know what happened. All I know was that it was wasn’t good. I lost two stones, which I am now trying to put back on, but it shocked me. I referred to the experience as trauma when I was in there. Here’s to continuing and rapid progress.

    Regards

    Stephen

    Like

  16. Lynda Nicholson says:

    Hats off to you Andrew, you are coping amazingly well with your gruelling regime. You are inspirational. Take care and keep getting better. Lynda N. X

    Like

  17. Claire says:

    Keep going Andrew. We’re all pulling for you. xxxx

    Like

  18. Pingback: Stem Cell anniversary bike ride for Maggie’s | The fight of my life

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s