It’s been a while since I’ve written an update and it’s getting increasingly more difficult to find the time to. I thought I would have time over Christmas and New Year to do it but I didn’t, then I thought I’d have time to do it in Hong Kong but I didn’t, so I after much pondering, I’ve decided to call it a day and finish my blog.
I started my blog way back in September 2012 after my cancer diagnosis to help me, Ade and my immediate family. It was such a sudden diagnosis that we had trouble keeping up with what was happening, never mind coming to terms with it. It was actually Ade’s idea and the whole purpose was that it was a way to keep all our loved ones informed on what was going on without the need for them to come directly to us. The original purpose of the blog changed very quickly, it soon became a way for me to cope and get through the hell, but most importantly, it became a tool for other cancer patients, their loved ones, and even members of the medical profession.
If I’m honest, I didn’t think the blog would last, but when people started contacting to tell me how valuable the information and insight I provided was, I carried on, it then became one of the few things that kept me going. I found the blog therapeutic and it was mainly because I knew that it was somehow helping others. Cancer is really awful and if some good could come out of it, then I was happy to have made a difference.
I realised my blog meant something when I was nominated by several people around the world for the Lymphoma Association Beacons of Hope Award 2013 and won. I’ve read some of the submissions and it was really odd seeing words like courage and inspiration being used to describe me, they weren’t words I had ever associated with myself but it made me feel proud. It made me realise that writing the blog and committing to it was the right thing to do. I’ve somehow taken a really horrible period of my life and created something good.
I’m now 1 year and 8 months into remission and although I still have some ongoing health issue, there’s not much more I can add to my experience, hence the lack of updates. All I can hope for now is that my remission continues, so please hope with me and pray you never see me blogging about cancer ever again!
So now, I will sign off for the last time, at least on this particular blog. Thank you for all your kind words, your encouragement and the faith you had in me. Thank you for reading and being my audience. It’s now time for me to do what I do best, move forward, live and enjoy my life! I hope you all do the same too!
As usual, some recent random photos below for you enjoyment!
Much love and good health to you all!
Goodbye – 再見 – Sayōnara – Au Revoir – G’day – Hejdå – Auf wiedersehen..
Ade and I at BBC Sports Personality of the Year Awards 2014 in Glasgow
Big Bear Lake in California. Spending quality time with friends and Ade at the log cabin in the mountains Dec 2014/Jan 2015Santa Monica Beach, Southern California. Dec 2014/Jan 2015
Hanging out with friends on Sunset Blvd – Dec 2014/Jan 2015Thailand Jan 2015
If you really want to know what’s happening in my life, then you can follow me on Twitter @ – though I must warn you, I talk a lot of rubbish!
… sang James Hetfield some 11/12 years! Although I’ve stolen these lyrics from a song called The Unnamed Feeling, it pretty much summed up how I felt in the waiting room yesterday waiting to see my consultant.
My consultant was running about an hour late and that extra hour of waiting was probably the most agonising wait I’ve ever had to endure. I’ve had 9 PET scans in total over the last 2 years so I should be use to it, but the truth is, the more I have, the more anxious I get. Each scan seems to be more and more important.
In that hour, so much went through my mind. I was kind of aware that it was manically busy but in my mind, I managed to conjure up a different scenario. For example, I saw my stem cell nurse who has spent a good couple of years looking after me dashing from one place to another. She didn’t make eye contact with me or say hello like she normally would and she just looked so serious. Instead of seeing that she was incredibly busy, I read that to be that something was wrong with my results and she couldn’t look me in the eye. It’s completely irrational but at the time, in my mind, it made sense.
When I was finally called in, I was a wreck, I felt sick and I knew the moment I stepped into the office my consultant could see that. I was sat in a chair opposite her hunched over with my shoulders slumped as if I had a tonne of weight on them. That weight lifted completely when she told me, “the scan was good, it’s all clear”. The moment she said that, I sat up as if that weight had fallen off and I couldn’t stop smiling. I wanted to jumped up and do the Snoopy dance and punch the air and now I think of it, I’m not sure why I didn’t! Instead, in my head, I was screaming..
I’M STILL IN REMISSION! F**k CANCER!!!
I’m still screaming it silently as it happens!!
At the moment, life is good! My hair has grown a lot more, I just need to get my arse back to work having been off a few weeks and hope that my kidney function has improved. Results are die back today.
Love to you all!
It’s been over a week since I blogged and some of you guys have contacted me and asked how I’ve been, so I better update you on my progress. I’ve now been off work for two weeks and I’ve been signed off for the rest of this week, but I’ve been told that this time, I have to FULLY recover before going back to work and fitness training. Quite a few people, including doctors have already said to me “don’t be too brave Kat”. Seems they know me well enough now to know that I’m really no good at sitting still and relaxing. Most of the medical team that look after me still think I’m an absolute lunatic to have even competed in a triathlon just a little over a month ago (more on that later).
You be pleased to know that I’m not in hospital and that I’ve been home about a week. The first week I got ill, I was admitted for almost a week. I became one of those awkward patients who threatened to discharge myself as I was so upset with having to be in a ward that I pretty much lived in in 2012 and 2013. The moment I started asking about discharging myself, I was assessed by a few doctors and they decided that I could go home with a bag of drugs and under supervision.
What was/is wrong with me? As I said in the previous post, there were a selection of issues.
(1) I had renal infections – so we’re talking bladder and kidney. It had got so bad that it had caused severe discomfort and pain which affected my renal function. When I had tests, the doctors found an elevated creatinine level, it should be in the region of 100 or below, but mine was as high up at 142 which is far too high. Creatinine is a chemical waste molecule that is found in the kidneys and it’s a very good indicator of how well they are functioning. Kidney infection and disease can lead to renal failure which in turn can be fatal. I was placed on a continuous fluid drip to help bring down the levels, but it didn’t work, it served only to make me go to the toilet every 90 minutes throughout the night, so I developed a sleep deprivation problem.
(2) Low haemoglobin – I should be up at about 130, but over the course of a few weeks, it started dropping. When I was in hospital it dropped to as low as 79 – this is blood transfusion territory.
(3) E-coli – I was tested positive for e-coli. When I mentioned this to a few friends their immediate reactions always went to whether I ate something bad, but that’s actually a common misconception. Everyone has e-coli in the gut, but it’s usually harmless. But sometimes, something in your body can cause it to flare up and in my case, renal infection was the suspected cause.
(4) Uveitis – I’ve been getting really cloudy vision and it baffled my doctors so much that I was sent to an ophthalmologist at the eye hospital. I also baffled those eye doctors too and was eventually referred to one of the top professors in the country for complex eye problems. Turns out that the first two eye doctors just wanted his opinion because of my history with cancer and they wanted a second opinion regarding whether to take an eye biopsy. Thankfully, the professor said it wasn’t required and he believed that with medical eyedrops and time, it will return to normal. What I had was severe inflammation which came along at the same time as everything else. He wasn’t sure whether it was related to the infection or my compromised immune system but confident that I will make a full recovery.
So there you have it! The list above is what I’ve had to put up with the past couple of weeks. The state of play now is that my haemoglobin is up to 100, my creatinine levels have dropped to 129, as far as I’m aware the e-coli is under control, I’m not getting any soreness or pain in my bladder. My sight has also improved and the permanently bloodshot right eye looks normal now. I had an MRI scan of my brain and head yesterday and the results came out clear. My 18 month PET scan has been brought forward to Thursday now as my doctors want to test everything this week and rule a lot of things out, so I’m now worrying about that. But apart from that, I’m feeling the best I’ve felt in a good few weeks. I keep being told that I’m still quite ill, but at least now, I’m improving, albeit at a glacial pace. Hopefully in a week, I be back to work and fitness training.
I’ll keep you posted on my PET scan too, so expect a blog on Friday night or Monday. Please pray that it’s clear and my remission can continue.
As promised earlier – my triathlon! At the risk of boring you I’ve added photos below rather than give you a full report that only triathletes will find semi-interested. All I want to say is that this was the second time I competed this course and I managed personal bests on the swim, bike and transitions. My run wasn’t great but my overall time was also a personal best, so I’m extremely happy with that! Given I only had less than two weeks to train after my bout of shingles, I’m proud! I also raised over £2000 for the Lymphoma Association and Cancer Research too, so thank you to those of you who sponsored me and had faith in me to do this!
One of my friends left the BBC today so I should be enjoying a glass of bubbly at his leaving party, instead I’m sat in bed sulking and feeling pretty miserable. I’m back in the same hospital and the same ward as I was 18 months ago when I was fighting cancer.
..Oh my god, the guy on whatever BBC antiques programme that’s currently on TV at the moment looks like Vladimir Putin. Poor bugger…
Anyway.. I’m in because I’ve been hit down with a nasty infection which my doctors believe have caused a multitude of other issues.. Think ‘buy one, get one free’. I have renal infections so we’re talking kidney and bladder here. I also have a low haemoglobin count which meant I’ve had nasty headaches and constant tiredness, I also have e-coil and cloudy vision in both eyes. All the above has caused nasty temperature spikes as well and the inability for me to sleep very much. My symptoms started over a week ago but has really ramped up over the last few days. At the moment, I’m on a 24/7 fluid trip and twice daily IV antibiotic drip.
Feeling quite miserable and extremely tired. Today I woke up with a very sore neck, shoulders and back due to the uncomfortable bed. My sleep was broken up with trips to the toilet as I have constant fluid being pumped into me and at 3am I was woken up to go for a CT scan of my brain and head. I’m also bored still and desperately hoping I can go home soon but I have a feeling I’m here for a few more days.
When I was admitted, I was absolutely distraught. I’ve managed to stay out of hospital for nearly 18 months and hearing the news depressed me. When I got to the ward, it felt like a nightmare. I remember every single thing about the ward – the sights and clinical smells brought everything I felt when I was in here in 2012 and 2013 back. It was like having horrific flashbacks. I have an amazing view from my room, I can see The Shard, the London Eye, St Paul’s Cathedral etc but this view has haunted me ever since I got here. Over 18 months ago I was desperately ill, unable to leave my room and stared at that view – I felt like that person all over again.
As as the nurses here are great and the facilities are world class, it’s a place that’s full of ghosts. It made me realised how much my time here still torments me.
So please send me good thoughts and pray I’m allowed home soon.
Anniversaries as we know them tend to be occasions to mark and celebrate something joyous, or at least that’s what I use to think. But what I’ve discovered is that once you been through a life changing trauma, anniversaries serve as an awful reminder.
Today, the 28th of August is an anniversary for me. One I wish I could forget but has haunted me for exactly two years, the day I was told I had cancer. I still remember it like it was yesterday. I remember when I was given the diagnosis, I remember the excruciating walk out of hospital, I remember phoning Ade from the car – the hardest phone call I have ever had to make and I remember breaking down like I have never broken down in my life. I remember going to my parents house to break the news to them that evening, I remember the look on their faces and I swear I could hear the sound of their hearts breaking. To this day I can remember every single detail and sometimes when I close my eyes, I’m forced to relive it and feel that same pain all over again.
There’s a common misconception that if you’re as lucky as me, you come through and all is good again, but this awful disease leaves a legacy that you never get over. It’s like a death of a loved one, you never get over the trauma, it becomes easier to live and deal with. I’m ok now, I have my moments, mainly due to the consequences of the treatment I’ve had, but I’m handling it much better than I thought I ever would. But for my family, particularly my parents, it has taken much longer. My mum has been so strong and she still does so much for me to make sure I’m not overdoing things despite the fact I’m working full time and I’m back to being active – she treats me as if I’m made of glass. My dad still blames himself for my illness. It’s so irrational and off course it’s not his fault at all, I was just unlucky but I understand why he feels the way he does. Cancer doesn’t discriminate, it doesn’t matter if you’ve been a bad person or a saint all your life, it will get you if it wants to. But for someone like my dad, he struggled with the ‘why me’, he needed a reason as to why I was the one who got ill. I remember the day after I told my parents, I was admitted to Accident & Emergency at Southend Hospital, my dad came into my room and broke down, he kept saying that he had been a bad father and that he shouldn’t have disciplined me as a child, he should’ve been nicer to me and paid more attention to me. It broke my heart to hear him say that and to see that he believed what he was saying. I had an amazing childhood with the best parents anyone could have, but this is the nature of such an evil disease, it didn’t just screw me, it screwed my family as well.
It’s taken a while, but two years on, I have beaten cancer. I’m in a much better place now with a better outlook on life. My family although scarred, have recovered too. The ghosts are still there but we’ve all learnt to accept that they will never completely go away. I’ve just got over a nasty chest infection (turned up just after I got over the Shingles) and I feel fantastic. I had my best pool session in over two years, and I’m on course to do my first post-cancer triathlon next week. At the end of September, I should be exorcising the ghost that is the Ealing half marathon – the event that I had to withdraw from in 2012 as I was having my first ever chemotherapy treatment.
So, although this is an anniversary I wish I could forget, it’s here to stay but I’ve marked it by being “normal” (don’t laugh). I went to work today, I had a great session in the pool and I’m ALIVE!
As usual, I’m finishing this entry off with a few photos, but not before I thank my amazing family and friends for getting me through the last two years. Special thanks to my husband Ade for being with me every step of the way, to the donor who gave me a second chance by selflessly donating their stem cells to me, for my employers at the BBC for having faith that I would recover and return to work, and also my personal trainer for helping rebuild my strength, fitness and confidence.
Wow.. Two blogs in one week! Last time I wrote two in such a short space of time, I was probably very ill, but not this time.. I’m using this entry as a shameless plug!
Since the start of my journey, the one thing that has stayed consistent is the overwhelming support I’ve received from everyone. Not just those who know me, but amazingly, those who have stumbled upon my blog – be it fellow cancer patients, friends/family of patients, medical professionals or simply those who took an interest. The thing that really inspires me is reading the comments and messages left for me saying that I’ve made a real difference. Whether it’s supporting them through their journey or simply raising awareness. I’m now at the stage where I can ramp up my quest to raise more awareness and I’m going to do it in a way that people will recognise it as being ‘very Kat’.
You see when I was really ill, I remember lying in the PET scanner clutching a jade Buddha tightly in my right hand praying in my head. I made a promise that day that if I came out the other side healthy and cancer-free, I will do something to help others as a way of redemption. So here I am, keeping my end of the bargain.
My next challenge is to go back to what I love doing most… Triathlon!
On the 2nd August, the weekend of my birthday, I will be swimming, biking and running my way to another goal at the London Triathlon in aid of the Lymphoma Association and Cancer Research. These two charities have helped save my sanity and my life. If you want to help others like me and give me a bigger incentive to storm this triathlon, please sponsor me! I know in these austere times, money is hard to come by, but even a tiny amount will go some way in helping many others affected by this awful disease. Remember, cancer is a bitch and it doesn’t discriminate.
So if you want to…
Feel free to tweet, email, forward.. etc.. Let’s nail this together!
Ironically, only time will tell!
Next Wednesday, I have PET scan. This scan is quite a big deal for me.. well they’re all a big deal but this one is MAJOR! If the results comes back clear, it’ll mark my first full year of remission. I’m already on edge.. actually scrap that, I’m practically half way down the cliff. I can’t sleep, I’m exhausted and I’m an enormous bag of nerves!! 😦
Anyhow, I’m writing because I’ve been terribly slack with updates and some of you have contacted me wondering if I’m ok! I’m ok! In fact, I’m good.. except for the stress and tiredness.. but my health has been great! My consultant is very happy with my progress and she’s now in the middle of reviewing my medication. I’m down to 3 tablets a day and she’s looking to reduce that down to 2 a day. I was a little disappointed on Monday though, I had a blood test and it showed that for the first time in months, my neutrophils had dropped to 0.9 so I’ve had to give myself a GCS-F injection to boost my immune system.
On a cheerier note, it’s my birthday – well that’s not strictly true, it’s my immune system’s birthday! I had my stem cell transplant on the 23rd May 2013, so it’s been precisely a year since the procedure.
Looking back to this time last year, it’s amazing to think that I was lying in hospital feeling a complete mess. I had no hair, I felt weak, struggled with food and fluids, was too thin, had constant nausea, in pain all over and feeling pretty depressed having been told I had a 30% chance of dying during my transplant. A year on I’m sat at home with a pixie haircut, feeling strong and wondering why the hell the Chelsea Flower Show is still on my TV. The difference is astounding and sometimes, I have to stop myself to appreciate how far I’ve come and how hard I fought to get this point. I just hope the scan next week comes back clear and I can continue to move forward because I’m not done yet! I have 3 sporting events to compete in and I’m still on my quest to make a difference and help others who’ve been hit with this evil disease. Here’s some perspective for you..
This was my life a year ago: CLICK HERE
This is me now:
I wish I had a photo from my time in hospital for comparison, but I remember feeling so self-conscious that I wouldn’t allow photos. Put it this way, if you remember that image of the ex-Russian spy Alexander Litvinenko in hospital a few years ago, I probably didn’t look too dissimilar to that.. maybe more haggard looking!!
A few of my readers have asked me recently how I’ve managed to recover so quickly. They knew that my determination and mental strength played a huge part (and off course medical science) but they’re baffled how I seem to have fought off the fatigue so well. Truth is, at the beginning I just succumbed to the fatigue and slept, but now it’s under control and it’s largely to do with getting more exercise and keeping myself busy and active. Before cancer, sport and competing was a huge part of my life. When I was diagnosed, my consultant said to me that my fitness and lifestyle would help me through my treatment and I honestly believe it did and in some ways I think my fitness primed my body to cope with the aggressive treatment I received. The moment I felt strong enough I went back to the gym. Just before I went back I was overcome with dread, I was completely utterly lost and overwhelmed. My parents and Ade were concerned that I’d go back as if I had never been away and either injure myself or burn out so we agreed that I would get a personal trainer to help me. It took a bit of courage for me to get one, namely because I’m not a huge fan of being told what to do, but also because I was so self-conscious and hated what cancer had done to my body. So Ade came to the gym with me to help get me a trainer and I have to say, it’s probably the best decision I’ve made post-transplant. My trainer, Gary Hobbs (no, not that loser that was in EastEnders) has really helped me get to where I am now. I was worried that he wouldn’t be able to work with me because I had so many health issues, but he literally went back to basics and worked me up from there. My fitness is still not where it was pre-cancer, but I’m getting there, my strength and stamina has improved and amazingly, it has affected my self-esteem and confidence. Had I gone it alone, I probably would have either done myself a nasty injury which would have landed me back in hospital, or I would have given up getting my fitness back.
So I guess what I’m trying to say is that if you’re recovering, think about what you love to do and work towards it, or at least set a goal. With me, my goal was to get active again and compete. Rediscover your passions and set a goal based on it. Be realistic to start of with and remember, every step forward, no matter how small or big, it’s a step closer to that goal. Oh god that was nauseating!
On that bombshell, I shall leave you in peace, there’s a glass of champagne calling out my name!