I ended my last blog around my stem cell transplant with details about surviving my transplant of magical unicorn blood aka stem cells, and the fact that I could go back home to the people (and animals) that I love.
My diet was going to be extremely strict, and I had to be extremely careful of everything that I was putting into my body, as well as ensure I wore my mask at all times as my immunity was slowly lowering to nothing. Husband had to do all the shopping and take care of everything around the house as I stayed in bed and occasionally ventured out to our lounge.
Warren went to collect my mum from the airport as I went to a check-up with my doctor, and we all returned home to settle into a relaxing, safe time together before husband had to leave for work away from home again.
The next day I woke up and tried to pat down my hair from having been lying down. I couldn’t believe it when I felt all the hair coming out in my hands – I didn’t even have to tug on it and it was coming out by the handful. I was shocked and immediately shouted for my mum and Warren to come through to the room. They told me to try not to touch my hair, and walked me back through to the lounge to try get some food into me. I felt like I was developing a fever, and so we had to keep an eye on this – mums somehow know when you aren’t feeling well, and there really is no caregiver like a mum. We checked with a digital thermometer and my temperature was rising to 39 celsius. We phoned my doctor who instructed me to take some meds and get into a cool bath, but if it hadn’t gone down within an hour I needed to return to the hospital. For flips sake – I felt like I had just got my freedom!
Mum came with me as I was admitted into a private room, and they realised that I was completely neutroponic – meaning that I had no immunity at all. My dear darling duckling sat with me and prayed over the liquid gold that I needed for my treatment. I was in such pain, and they realised that I had developed tonsilitis – we have no idea where I had picked this up from, but they couldn’t take any chances with me being away from the hospital and I needed to be watched as they infused by already battered body with more antibiotics and medications.
My hair continued to fall out, and I filled a plastic bag within a day. I looked like I was trying out a Donald Trump-type hairstyle with a horrific comb over and bald patches. The doctors then rushed me back to the transplant ward so I was in isolation and away from the threat of catching anything else.
Limited visitors were allowed in, but I was always so grateful to see my mum waving at me through the window before she got dressed up in all her protective gear – it would be another 3 weeks before I could speak to anyone without all of these measures in place. She was staying alone at our home as Warren was now at work, and she was having to take care of our furkids, as well as never missing a chance to come visit me. By day 2 my hair had fallen out to such an extent that the nurses recommended she go get a razer to shave off the last of it so it wouldn’t be so traumatic losing the bits and pieces.
I managed to hold myself together as the last pieces disappeared off my head. Who would’ve thought that losing my hair would be the final nail in the coffin with my emotions and what I could cope with? I cried as I held the last of the hair in my head, and was terrified that my husband wouldn’t find me attractive without my hair.
Over the next few days even those little bobbles of hair disappeared, and I was left with a shiny head – and not knowing where to end my face cream anymore!
My life consisted of those 4 walls, with my bed, a chair for visitors, and a TV – as well as my own toilet and shower. And that’s all I saw. The nurses tried to comfort me, but I was craving human touch. A hug. A hand on my arm. A quick squeeze, But nothing was allowed, and even drip changes were down avoiding any direct contact. This really destroyed my emotions, and was probably the hardest part to have dealt with through this journey.
And then began the irritation – not just through my emotions, but with my skin reacting to the plasters and medication that was constantly being pushed into my veins. I developed rashes all over my body, and I began to ache in all my big bones – this is great as it is a sign that the stem cells were settling in and beginning the multiply but holy crap that pain was unreal. Even with the strongest pain killers and sleeping tablets I still couldn’t get comfortable and would lie alone in my cell crying. The constant checking of my blood sugar also meant that my fingers were left bruised and sensitive, and all the cortisone means that any movement resulted in further bruising and pain.
But of course there were still good days. There was dance parties with the nurses through the glass windows, there were chats on the phone, and best of all there was seeing my mummy every day – something I really missed since moving to a new province.
I received multiple blood donations during this time too, and funnily enough looking at it always made me feel a bit weird. I guess I’m not as strong as I like to believe! My mum then had to leave to go back home to work, and luckily my sister arrived the following day to come take care of me as I was going home. She was very excited to get dressed up in all the hospital garb and experience life on the “inside”.
I was so excited to get home, and I think the excitement was too much for me as I collapsed on the couch the moment we walked in and my sister had to wait on me hand and foot. I felt extremely weak, and even needed her help to bath as well as walk the two small steps into our bedroom. I don’t know if it was all the emotions that overwhelmed me, but that weakness scared both of us and we were sure I was going to end up back in hospital – which I definitely didn’t want.
But, this was the end of the stem cell transplant journey, and I was thrilled to discover that my immunity was starting to build up again and every day I felt a little stronger than I did the day before. I was no longer choking on food or slurring my words, and I truly believe that I have been given a second chance at life – a second chance at LIVING.
I was off work for 3 months in total, and I spent this time rediscovering who I am, without being identified by my illness. I played with makeup, finally got to venture out into the world with my shiny bald head, and got to play with my pooches. I had my nails done by my friend, and I had the time to allow my body to recover and recuperate after everything that I had just put it through.
My stem cell transplant was possibly the most difficult thing I have ever been through, and I don’t think I would ever have the strength to go through it all again. However, I am living a life now that we didn’t think would ever be possible. I am not in full remission as we had hoped, but I am better than I have been since my diagnosis in 2004 and for that I am extremely grateful.
I would especially like to thank Dr Gunther and all the nursing staff at Olivedale Hospital for their support and belief in me and this treatment. Without them this would not have happened, and I doubt I would still be here to share my story.