I can’t quite believe I’ve just written that title. How is it two years already?!? It feels like yesterday that I was sat in the haematologist’s office, waiting for that dreaded diagnosis. I recently told my friend this story and she asked how I reacted when I got the results. I told her that I remember feeling a sense of relief and determination – I finally knew what it was and I had something to work with. It was the eleven days leading up to the diagnosis that were the hardest. The unknown, the fear, the anxiety, the sadness. I’ve never experienced such a dark time in my life and I pray I never will again.
So two years on from that diagnosis meeting, I ‘don’t look back in anger’ but I look back with pride. I am beyond proud of myself and my body and how far we have come. I believe in myself more than ever and understand how my mind and body works now. Two years ago I truly grew up and it’s made me who I am today.
Results wise – I’ve had a slight blip in the road on my last blood tests. My levels have gone from 0.002% to 0.02%. I’ve lost a zero and it initially brought back a rush of anxiety and fear. But it’s ok……….after processing the information and speaking to my loved ones, I’ve realised that this is just a small hurdle in my journey. My body has been fighting a lung infection and therefore my immune system has had a hit. My aim for the next three months is to rest, remain calm and stay healthy. All being well, I might earn that zero again! Good things come to those that wait right?!
Ending of a positive note, my countdown to baby number two hasn’t been affected this time – thank goodness. In one and a half years I will hopefully be able to temporarily come off the meds and work on extending our little family. Let’s see where life takes us shall we!
I’m writing this update at a very strange and bizarre time. Most of the world is currently in lockdown due to Covid 19 and us cancer bods have been told to self-quarantine for at least 12 weeks. A small price to pay for keeping safe and healthy but hard all the same.
I have received my most recent PCR results and they have definitely helped to put a smile on my face! I was thrilled to hear that the abnormal cells in my blood have gone down to 0.002%, bringing me further into the remission phase! Thank the lord! There was a slight chance my results might have shown a tiny increase (potentially out of remission) due to the fact that these numbers are so tiny. Sometimes it’s possible to get a varied percentage from two different readings. But luckily for me, the second results have shown a decrease! I’m sitting happily in remission still and I plan to stay there.
My next big test is in June, so until then I plan to stay safe and keep healthy. I’ve not survived cancer to let covid knock me over! Not on your Nellie!
I’M IN REMISSION! I REPEAT….I…AM…IN…REMISSION!! I literally can’t believe it. I turned up to the hospital for my usual test results and was knocked sideways by the news. It’s safe to say there were a lot of tears! Over the last three months the abnormal cells in my body have reduced from 0.032% to 0.007%. As this is below 0.01% it is classified as a molecular response. For my condition this is known as remission!
So what now I hear you say! Well for the foreseeable future I will stay on my Nilotinib medication, to ensure my body stays in this remission phase. All being well, I may be able to temporarily come off of my tablets in two years time, to try for baby number two. As you know, I would love to make us a family of four, but for now it’s one step at a time. I’ve reached remission which is incredible – my main goal at the moment is staying there! I’m focussing on the here and now and taking life one step at a time. I feel incredibly blessed to have reached this stage and plan to continue living and loving every single day.
So……it appears that I never wrote an update for my most recent PCR results! I swore I had but with baby brain, mixed in with chemo brain, the likelihood is that I didn’t! Stupid brain fog!
Anyway, aside from kicking myself for not writing this sooner, I am feeling very pleased with my current statistics. On my one year check my results had plateaued , so I was relieved to hear that the cancer cells had reduced since then. My results have gone from 0.053% to 0.032% and I am absolutely thrilled. It’s not remission yet but I’m once again heading in the right direction. I just need to gain one more zero and then I will be shouting from the rooftops!
Apart from my results, nothing else has really changed. I still have fatigue and mild headaches but I have learnt how to manage it in my day to day life. I’m feeling so much more like myself and I’m excited about making plans for the future. First stop……Christmas!! Hope you all have a wonderful holiday xx
I can’t quite believe it has been just over a year since I was first diagnosed with CML. It just shows you how quickly time can fly. When I reflect on the past twelve months, I am proud of how I have spent my hours. I didn’t let the diagnosis hold me back for long and I quickly found ways to adjust to my ‘new normal’.
I think I can confidently and proudly say that I feel in control of my body once again. I understand how it ticks and when I need to let it rest. I’ve gained a clearer insight into how important my mind is and how vital it is to look after that too. I’ve always run on adrenaline and stress use to spur me on. Nowadays I’ve experienced how dangerous this can be for me, so I no longer let myself get to 100mph. A slower paced life has led to a stronger body, healthier mind and more time with the people I love. Because ultimately thats all I care about. No one knows how long they have on this planet but if we did, surely our last moments would be spent with our nearest and dearest. Why wait until its too late?
In terms of my one year results, I sadly didn’t have a decrease in my abnormal cells this time. They have plateaued at 0.053% which is the same as three months ago. My consultant has reassured me that this is fairly normal and was likely to happen at some point. I felt down about it initially but have let that go now. The good news is the tablets are still working. My body has obviously just needed a little breather along the way. We all need that sometimes don’t we? A little more resting for me over the next couple of months, to help give my immune system a break. Us chicks need to stick together!
I’ve had a few people ask me how I made my sister’s chocolate surprise cake, so I thought I would write a quick blog to explain it.
I used a simple chocolate fudge cake recipe out of one of my baking books. There’s plenty online and they all sound similar – take your pick. I doubled the ingredients so I had plenty of mixture. I wanted the cake to be huge!
I baked three cakes using eight inch tins. I let them cool and then put them in the freezer for 24 hours (wrapped in cling film and greaseproof paper.) The reason I did this was because I find it less exhausting to do my cakes over a couple of days and I also think it’s easier to shape and decorate a cake when it’s cold. Especially when using chocolate!
Here is a quick rundown of what I did with the three cakes once I got them out of the freezer:
Let the cakes defrost slightly.
Cut off the tops of the cakes so they are flat. This makes it easier to stack.
Use a large, round cookie cutter to create a hole in one of the cakes.
Apply chocolate buttercream to the first, full cake and add the cake with the hole on top of it.
Fill the hole with Maltesers (or any chocolate/sweet treat)
Add buttercream to the cake section and layer the third cake on top.
Cover the cake in buttercream and use a palette knife or decorating tool to smooth the sides and tops down.
Stick chocolate fingers or Kit Kats around the edge and secure with a ribbon (if needed.)
Position a number or candle in the centre of the cake.
Add lots of chocolates to the top of the cake. I bought a range of different shapes and sizes, so that some were sticking out of the cake and others decorated the top.
There you have it! A chocolate fudge surprise cake! Very simple to do, fun to make and delicious to eat! Win win all round I think!
What an exhausting yet exhilarating day it’s been. I attended my nine month review this morning and was told that the cancerous blood calls have reduced further. Since my least PCR test (three months ago) my abnormal cells have gone from 0.156% to 0.053%! I’ve gained myself another zero – wahooo!!!
Remission is still a little way off. I need to get my results below 0.0032% for them to class me in remission. I will then continue on my treatment for two years and if I successfully stay in remission, I will be able to temporarily come of the medication to try for another baby. It’s a long way off at the moment but it’s my end goal. It keeps me going when doubt or negativity creeps in.
My consultant was thrilled with my results today and told me that the target for one year on Nilotinib was to get below 0.1%. I completed this in half the time and achieved it by six months. That sounds like I’m bragging doesn’t it? Can you brag about cancer results? Maybe but I don’t even care – this bloody cancer is going and I want to shout it from the rooftops!!!!
I feel so blessed and thankful that my body is reacting to the drugs and so far I haven’t had any results increase or plateau. That being said I can’t guarantee this won’t change in the future but for now I have a lot to be thankful for. May this positivity continue!
I always like to touch on how I’m feeling at each update to help raise awareness of CML and to hopefully help anyone else who is facing a similar journey to me. My fatigue is still an issue and I find it exhausting to go a whole day without a nap (usually when my daughter sleeps). I’ve learnt how to listen to my body and give it what it needs, which is something I use to be pretty rubbish at. Life would take over and I would run with it on a rush of adrenaline!
I still get the occasional headache and back/shoulder pains. I believe this is linked to tiredness and also the weight of carrying my 19 month old daughter. It’s hard for me to pinpoint CML symptoms because I found out I had the disease when my daughter was young. It’s hard to distinguish between the CML side effects and being a mum! Both can be exhausting and have huge impacts on the body and mind.
I thought I would end this blog with a piece of advice I gave to someone last week. A lady contacted me and asked what she could give to her friend who has just been diagnosed with Leukaemia. I messaged her back and said the best thing I ever received was love and support (as cliche as that sounds.) I don’t think I would be at this stage if it wasn’t for my incredible family and friends. They’ve been there every step of the way and it’s because of them that I’ve kept an open mind, healthy body and happy heart. I will forever be grateful.
My lovely daughter is teething at the moment (does it ever stop 😩) and we’ve had some particularly difficult nights with her recently.
At 2.30am last Thursday my husband turned to me and reminded me to chill. I had been in and out of my daughters room for over three hours and was starting to loose my mind. He took over and I went downstairs and ate grapes. Random I know but I just needed space and the grapes on the kitchen side were the perfect distraction.
I took some time to myself and after a few minutes I went back upstairs. Not long later my husband (aka the baby whisperer) came back and told me she was asleep. He then said something that has been playing on my mind ever since – “You need to look after number one.”
What he meant by this is that I need to take care of myself and ask for help if I need it. Two things which I’m not very good at. You see my number one changed the moment my baby girl was born. I have put her needs before mine ever since and I will continue to do this for the rest of my life. But what I need to remember is that my little girl needs a strong and healthy mummy and she won’t get this is I don’t take care of myself too.
I know this is the case for so many mums and dads out there and I believe it’s one of the hardest acts of juggling you can face. You have this unconditional love for your little human and an animal instinct to protect and provide for them. This has its wonderful sides but it can also be bloody hard! I found it tough to vocalise this initially, as I didn’t want people to think I wasn’t coping. Becoming a mother was an absolute dream for me and I didn’t want to communicate the hard parts to anyone.
When I reflect on the first year of my daughter’s life I can see how this lack of communication caused me to fall deeper into a dark hole. I experienced a very tough labour followed by a long recovery. What followed this was episodes of anxiety attacks and a lack of control for looking after my body and brain. I wasn’t eating properly and didn’t rest and recover like I should have. I was exhausted and worried but was floating along on cloud 9. Such a strange time with polar opposite emotions.
I was consumed with being a parent and sadly this had a huge impact on my body. My immune system hit rock bottom and at some point an abnormal cell grew which my body couldn’t fight. After diagnosis I started to allow loved ones in and I slowly rebuilt the woman I had left behind in the labour room. I now feel like I’m back in my own body and luckily have people like my husband here to help keep me in check!
So here I am, feeling stronger and healthier than ever but realising that even the best version of myself needs support and time out sometimes. Here’s to guilt free parenting and a future of embracing our inner 21 year olds. I know mine is raring to get out and party! It’s about time I let her!
‘Yoga is not about touching your toes. It is about what you learn on the way down.’ – Jigar Gor
Yoga is something that I have practised, on and off, for many years now. I took part in the sessions because I wanted to strengthen and tone my body. Although this is all well and good, I never really appreciated the true essence of the practise and what I could gain from it.
Over the past few months yoga has become a staple part of my weekly routine. When I was first diagnosed I was left feeling very weak, emotionally and physically. I started doing small yoga sessions in my living room, using clips off Youtube to guide me. These small workouts helped to regain my confidence in the exercise and persuaded me to start a real class.
Since then I have been taking regular sessions in town with a wonderful instructor. It is because of this lady that I am slowly but surely falling in love with yoga. Not just because it is helping me to regain strength and balance but because it is giving me a release from real life and time to focus on me. Life is so busy and I often forget to make time for myself. Yoga encourages me to listen to my body and mind and to embrace how they are feeling. A skill I am trying to master in my everyday life too.
My new years resolution was to try new things. Although I have done yoga before, I feel like I have learnt so many things through it. I want to continue learning through the practise and I’m hoping it will lead to other new opportunities in my life. By finding my inner calm and embracing it, I believe new doors will open for me. And when they do, my mind and body will be ready to skip through them.
Today I’m having one of those ‘blue days’. A time when you feel a bit ‘urgh’ but can’t pinpoint why. It could be because I’ve been stuck in doors all day, waiting for a mattress to be delivered. Or maybe it’s because I’m extra tired, as I worked a few hours yesterday. It might be because I’m missing my husband, who has been working late recently. Who knows! It could be all of these things or something completely different.
I like to think of myself as a ‘cup half full’ type of gal and I always try to find positivity in the life around me. I’ve waited in all day because we’ve got a brand new mattress – goodbye achey backs and unsettled sleep. I’m tired because I’ve returned to work. I’m finally feeling like my old self and I’m thrilled to be back in school. My husband is working late so that we can afford for me to take a slow return to work. It also means we should be able to afford a little holiday this year. I know all of these things but sometimes a positive outlook on life can’t suppress your emotions (and hormones).
It got me thinking about these days when your emotions decide how you’re going to feel. I find myself getting frustrated when a ‘blue day’ creeps up on me. But actually I need to embrace it and remember that it’s okay to not feel okay. In fact it’s more than okay. To feel, whatever the emotion, is to live. How can you appreciate the happy days, if you haven’t experienced the sad ones?
So today I am embracing that ‘blue’ feeling and understand that it will pass. Just like a tulip, sometimes I will feel low and in need of light. But I trust that the sunshine will appear in my life once again and when it does, I will rise to the occasion.