Staying Positive

Since early December last year I was having a horrible time trying to stay positive, after my dad was having to go back on the chemo as his AL amyloidosis light chain results were increasing quite rapidly every month since stopping the chemo in May 2013. As you all probably know it's the fears, the what's, the why's, that rock you to the core if you let them in.

It's partly to do with how ill my dad was with the effects of the chemo and many other drugs that you have to take to keep you on an even keel. When he started the chemo in January 2013 he was fine for 3 weeks, and it was just one thing after another, haemorrhagic cystitis a 2 week stint in hospital, 3 days after being released we were back at hospital with an 18inch blood clot in his leg, followed 4 days later with a mini stroke which fortunately only lasted a few hours, finally released after another 2 or 3 weeks, he lasted I think 5 days at home before my mum had to call an ambulance in the early hours because of the fluid retention around his heart and it not being able to pump properly, this resulted in another 3 week stay in hospital, finally came home and 2 days later he was back in with his blood pressure dangerously low resulting in another month in hospital, all the while I could see my dad changing in front of my eyes the depression set in. Hospital can be demoralising the beds uncomfortable because of his weight loss, the food and staring at the same 4 walls day in day out you can understand why.

So with the trauma of the 3-4 month period at the beginning of the year still pretty fresh in my memory, I went into meltdown. I was having panic attacks which I'd never experienced before, a broken bauble was a trigger, ridiculous I know, but it was almost a metaphor for the impending doom I was feeling at the time, glass shattered and irreplaceable, it was the straw that broke the camels back. Especially just before Christmas.

Having a lovely Christmas with family helped, but in the back of my mind I was still thinking could this be his last, terrible I know but reality bites and it sucks!

Eventually New Year has arrived and dad is surprisingly doing ok, yes he's ill and has the usual side effects nausea, lethargy, weight loss and many other things, but at the moment we've only had 1 hospital stay and it was something unrelated, so things are looking good.

Anyway this blog is about staying positive, so at the beginning of the year I saw an advert for the 10Km Great Manchester Run, and thought you know what I'm gonna do this, (being a non-runner and overweight you wouldn't normally put the 2 together, but hey ho). I thought it's something we can all focus on as a family, I can get healthy & fit once and for all, I'm gonna run for a charity of my dads choice, he wants it to go into research for amyloidosis, so probably the UCL hospital as this is where the national centre is in the UK.

I'm 2 weeks into training and am just starting to run this week doing a walk/run programme and mentally am feeling much better and positive and focused. I suppose I'm trying to say that I may have found my thing, It is hard sometimes to get the motivation to go out, but I think of dad and why I'm doing it and there's no stopping me. It's good to have that time to just switch off and focus on nothing other than putting one foot in front of the other. I think it's really important to have that little bit of time to yourself, whether it's a yoga class, or doing cross stitch, or just having a long soak in the bath.

Even through the darkest days, there is always someone there for you, be it on here, on other networks, doctors & nursing support, it's important to use these to share your thought's, fears, and get answers to the many questions you will inevitably have. You will come through it. Just remember to stay positive!!!

Terrific, Luci! Best of luck to you with your training and the run. I'm sure your dad is very proud of his daughter!

Dear Luci, I feel you. My husband has ATTR amyloidosis and every single day he is hanging by a thread to being admitted in the hospital. A year prior to his illness I discovered running and last year started going to Zumba and those two hobbies sure helps tremendously in my own struggle in keeping it together for him. Keep running and as the saying goes it is cheaper than therapy. God bless you.

Hi Luci

Good for you! As you know my son Stu did the BUPA 10k Great Manchester Run in 2012 & 2013, although, unfortunately, for unrelated reasons, he is not doing it this year. Good luck with the training.

I went to the NAC last month & they have put me down for an appointment next February - but with monthly blood tests locally - Good News! I told them that I would be happy to do that for the next 25 or 30 years, but they were non-committal....

Best wishes to your Dad.

You are an amazing daughter, Luci! As I know, it is so hard seeing your loved one and their struggle to fight AL Amyloidosis. I am so impressed that you are going to do the Run for such a great cause! My prayer is that a cure is found soon!

Good Luck with your run Luci. I pray that your dad continues to improve and as that happens, all of you will begin to feel better. If you are feeling depressed, there is no shame in asking for some meds for yourself. They can help take the edge off of the little things that bother you now. I have taken them in the past and found that they do help. Once things improved, I stopped taking the meds. If it can help you be more positive, you dad will see that in you and it will make him more positive as well. Take care and train carefully....don't want you getting injured in the process.


oh wow, thank you all for your kind words, sorry I've not been on for a while I didn't think it would get this sort of attention when I wrote it. In a way I was just getting everything off my chest. Training's going well although i did have a dodgy knee last week but my times are getting faster even if it's only a few seconds, I'm improving and that's what matters most :D

Dad's still going with the chemo he's due for his next round next Saturday, so as usual we just play it by ear, and wait for the next lot of results so as always we are keeping everything crossed for some sign that the chemo is working.

Thank you all again x