(18) 6 Months post transplant...

 6 Months post transplant...

Well, I didn't think 6 months would come, and I certainly didn't anticipate being worse than before treatment, but here we are. In my head I'd be working, driving and running again by now. Not the case, in fact far from it!

I have based recovery on some other stories I had read... why not aim high, I am only setting myself up for a greater disappointment.🙄 I was worried that maybe I was doing something wrong, thinking perhaps I shouldn't be pushing myself too hard. But like most things, if you don't use it, you'll lose it. 

It's important to keep moving, so despite motivation being low... I do. And no, apparently I am doing everything right, and time, it'll take time to recover.  I am inpatient, I know, but 6 months of doing not much feels like forever!! And now I have to wonder if this is as good as it's going to get. 

Everything seems like the biggest challenge, and I have learnt to listen to my body better, pace myself, plan my time and don't rush. Rushing is not something I am good at anymore. 

I try to do small things around home, although they are hard and take much longer than they should. I don't like asking for help, never have, and yes, I am unrealistically house proud, always have been. 

Sometimes I do have turn a blind eye, it's just too hard to do everything, and I need to prioritise, it's another learning curve. I keep saying 'I am not dead'. The head works fine. but the body fails terribly. 

I have accepted (to a degree) what is and continue to fight. Although some days are harder than others, some days there are tears, a lot of tears. It is hard to say if they are feeling sorry for myself, frustration or hormones. Probably a combination of all! Menopause is real, and thankfully my symptoms are mild, so I have not had the script filled that my doctor gave me. I knew that treatment was likely to exacerbate menopause, but it was the least of my worries as I knew it was bound to happen sooner rather than later. It has been confirmed that yes, it's real, and I have the script if it gets bad.. but manageable with only hot flushes mostly at night, not sweaty flushes but hot enough to want to kick my feet out of the blankets!! Temperature regulation is problematic! The blankets I have on the bed are ridiculous! So heavy, but I shiver if I don't them all. Summer will be interesting. I love the warmer weather usually, and I am lucky that I have not noticed a heat intolerance with this disease, but we will see. 

6 months also marks the end of the medication I have been taking, I have had anti-viral every morning and evening, as well as anti-biotics, they have been a preventative measure more so, one I have taken since being home, so it's strange to no longer take. Some have said that they have contributed to dizziness (which I feel daily) so we will see, no changes yet, and it's been over a week since stopping meds. My Haematologist doesn't think they are linked to my symptoms. 

My physio who I see weekly, thinks I will wake up one day and be fine, I am still waiting for that day!!

Most of my appointments with him are for strengthening, he has started to put me on the treadmill, we don't stay on for long, but it has been good to see where I am going wrong! He says I drag my left foot, and look down (bend) too much, so we have a bit of correcting to do. Sometimes I get sore muscles, which is good in a way, I've always said, no pain, no gain!!😂 

I've been able to get my hair and nails done again. It's the small things!!

I also see my PT weekly, she is kind enough to come to me to use my home gym, but I look forward to getting back to her studio at Westlakes. 

I am also working with a Speech Pathologist weekly, she also comes to me. Once upon a time you couldn't shut me up, I would run and still talk non-stop but now I am much slower, and pitch isn't as good as it was. 

I have started seeing another physio who does more cranial drainage, it may or may not help 🤷‍♀️too soon to tell. My chiro (who is brilliant, and I have been going to for years) has tested for inner ear issues, which he doesn't believe it is & adjusts accordingly. I saw an ENT last year so not surprised but chemo can cause issues.   

The shakes continue, tremors I believe they are called. Its worse than it was a few months ago, lucky I like lip gloss more than lip stick or things could get very messy!! 

I know my neck muscles are weaker, also can be caused by chemo. I describe myself as feeling like one of those bobbling head ornaments. I focus on strengthening in my own time as well as gaze stabilisation (eye exercises). That and the continuation of study keeps me pretty busy along with watching trashy TV! 

Every day I get up and get ready for the day. I appreciate the messages from friends/family, many have come to visit, sometimes we go out! Some don't know what to say, & that's okay. Mum comes weekly which is nice, sometimes we do nothing, other times we venture out. Thankfully, mum helps with odd jobs that I don't like to ask Marcus or the girls to help with including majority of my packing to holiday in sunny QLD. 

To celebrate 6 months, we wanted to escape the cold. Not being vaccinated, and still slightly traumatised from the long haul from Mexico, I wanted to stay in Australia, so QLD it was!! 2 nights in Cairns and 4 in Palm Cove. Having been before, so no need for anything touristy but I will need to take my walker, and Marcus has hired a mobility scooter. Not ideal but necessary to get around. Not at all what I anticipated.     

In July, we unexpectedly lost a special friend, he messaged often, usually just to check in and see how things were going. I miss that, and sad I'll not be able to share good news one day. 

This week I saw my neurologist, who did a letter supporting the fact that I am unlikely to work again, the thought of it breaks my heart but it's probably for the best. I have not heard from anyone in my old team, barely anyone from the P&C space, I keep saying, I must have been a terrible boss & team member!! I still recall the sleepless nights & endless hours I gave. You really are just a number. You can't control how someone behaves, but you can control how you deal with it. Anywho, as disappointing as it is, onwards & upwards. 

Marcus continues to be amazing as do the girls, not ideal to rely on them for help, (it's a mother thing) but I am extremely lucky!! I try to keep things as normal as I can. I have noticed that I am more conscious of what I am eating when out, more the level of difficulty to eat. 

I hope the next update has a more positive outcome with photos of me running and cartwheeling all over the place.