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My continued battle with the never ending twists and turns of my AML. Having secondary illnesses of heart and lung problems due to chemo and the, what seems like, the forever wait of getting a SCT.
The last two months have been so chaotic that I have had to remind myself that the reason for all this mess in my life is because I’m fighting for my life. This isn’t just a quick stop in hospital and it will all go away illness... if only!!
Getting to the point of being able to have my SCT in October was a challenge I quite happily took on and when I finally heard the words were going ahead with it, I felt like finally I could move on, breathe a little bit better. Yes I went into panic mode and yes I questioned whether I was doing the right thing but at the end of the day my survival instinct kicked in to save the day. Going into hospital again was just another fight I had to make to get a little closer to the bigger goal of a better life, a more normal life.
Being in isolation is one of the hardest things to face, especially for someone like me who likes to have a good natter and put the world to rights. Not having family close didn’t help and relying on technology as an only way of communication would of been fine if only the WiFi, (which I begrudgingly had to pay for, out of my non existent finances) had been more reliant. On a good note though because the signal in my room was so bad, it did make me more determined to get out of bed and go on walkabouts just to talk to someone. Don’t get me wrong the staff didn’t ignore me, they were lovely but I wasn’t in need of medical attention 24/7 like some of the other patients so I would just get the occasionally head popped round the door to make sure I didn’t need anything and to remind me where my bell was lol
I was in for a total of 23 days ... intensive chemo first week, stem cell transplant followed by just over two weeks of willing my new cells to grow without any of the horrible side effects that could appear at any point... I turned out to be one of the lucky ones and 3 days after engraftment (15/10/18) my cell numbers were doing really well... when I heard the magic words you can go home, oh boy was I excited.
My own bed, no more obs in the early hours, no more 7am wake up calls. I would be at home with my family and friends,
I was taking control of my life again.. How wrong could I of been?
Hospital life is easy compared to home life.... knowing that you just have to push a bell and someone is there to help, food cooked and hand delivered, three times a day without question, room cleaned every day and all tests and medication sorted there and then without the hassles of the travelling to and fro from the hospitals, chemists etc. Trust me I don’t want to be back in hospital but getting home and realising that suddenly I’m on my own again, I will have to arrange my own transport, shop,cook, serve my own meals, keep my house clean and tidy and all this while I keep my appointments at the hospital with the possibility of having to stay for treatment. I’m more tired now than I was before this whole story started. Family and friends will offer to do what they can but at the end of the day their lives go on, they can’t drop everything just because I don’t have the energy to get to the sink for a glass of water (bit OTT but you get what I mean).
Yesterday, for the first time since getting out, I sat down and properly looked around my world that surrounds me and came to a realisation that life will never be the same, my house that I bought four years ago, with all these elaborate plans on what it would look like when I’d finished doing it up, the diy jobs that, as a healthy person, I would of done and not thought twice about, my garden that now looks like a jungle, overgrown and unkempt. The dreams that I had that are no longer dreams.. they have become my nightmares as I watch them fall apart around me and there’s nothing I can do to fix them.
...This bitch cancer is now dictating not just my health but my surroundings too and as a bit of a control freak, I’m feeling a little let down by life at the mo.
I’m not giving up quite yet, I know I have options but with no job, having to rely on benefits that don’t take into account just how much cancer strips you of everything, not just the materialistic things we place around us for comfort... I mean our fight for a normal life, the extra costs that we pay to just keep ourselves warm, fed, clean... many a time I would just put an extra jumper on if I was cold, that’s not enough anymore, many a time I went without a dinner so my kids could have something, I can’t do that now, I have to eat.... life is expensive enough but when you get struck down with the Big C no one truly understands just what we actually lose until the evil illness hits one of their own and by then it’s too late for the so many who went before and were never listened too.
I will put one brick back in place everyday until my life resembles some normality but I know I will have to accept that some of those bricks aren’t going to match the ones missing but at least I will know in my heart that I’m still fighting for a better life for me and that maybe one day I can help a few of my fellow sufferers to put a few bricks back into place in their lives.
You sum up the early days of post SCT life very well. I don’t think people realise just how tough and long the post SCT recovery really is. The period you are going in to now was the toughest for me from a mental perspective. You have done the fighting for your life (when really you don’t have too much time to think) and now it is the slow road to getting back to where you want to be (and when your brain starts having the space to think more deeply). An SCT is absolutely not a quick fix - it is pretty much a reboot of your whole system, and that takes time to sort itself out.
But you are doing so well right now and really there is nothing more you can do than take one day at a time, and realise that every day is a day closer to your goal. And soon, you’ll look back and realise just how far you have come. And realise that some form of normality has returned.
Keep hanging in there,
Ah Kerrie - If only it was so easy huh? Although husb hasn't had SCT the end of cancer treatment (or SCT) is just a stage in the very long road and we all face the fall out for a long time. Life is likely very different from how you thought it would be or should be.
Now that you've got a little more time to spend "thinking" emotions can fill the spaces once occupied by fighting just to survive. Thinking gives you a chance to look around and realise that cancer takes so much. My hope and prayer for you is that what cancer takes will be replaced (that physically you will continue to improve, emotionally you will start to heal, materially you will adapt)
Patients (and families) probably get more resilient - but what outsiders don't realise is that resilience is hard won and that being resilient is exhausting. Especially when others might (?) be saying "oh wow you must be so happy now its over". But we all know it's never "over" because it changes you.
But Kerrie you WILL get through this - you will rebuild brick by brick and grow to accept that although the bricks may be mismatched that the foundations are still sturdy!
Typing trying to convey how much all of us on here do care and we do get it - honestly we do XXX
Hi Kerry if anyone can get through this you have the right way of thinking hopefully we will all get their my house is like some place I don’t know anymore but I think later and add it to the list under laters ,we all wish we could help everybody when we read their struggle keep going girl you can do this.
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