Tag Archives: stem cell transplant

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


Me in Northern California (Sonoma) on Christmas Eve with a Ford Mustang (free upgrade!)  Dec 2014/Jan 2015

Big Bear Lake in California. Spending quality time with friends and Ade at the log cabin in the mountains Dec 2014/Jan 2015IMG_6354Santa Monica Beach, Southern California.  Dec 2014/Jan 2015
IMG_6457Hanging out with friends on Sunset Blvd –  Dec 2014/Jan 2015IMG_4081Thailand Jan 2015IMG_4183

At a Tiger sanctuary in Thailand – Jan 2015IMG_0333Home in Hong Kong – Jan 2015IMG_0332

If you really want to know what’s happening in my life, then you can follow me on Twitter @KatOrr8 – though I must warn you, I talk a lot of rubbish!


Unless you have psychic abilities or prophet like intuition, who knows?!

Before I explain why I asked the question above, I’d better give you a quick update on what’s been happening as I know some of you have been wondering! I’ve almost recovered from the renal infections, the e-coli has gone and the uveitis has cleared up. All positive, except I’ve managed to get a really nasty chest cold pretty much straight away. After 3 weeks of it, it’s clearing up now. If you haven’t had it.. you’re next!!! It’s doing the rounds at the moment! I can’t seem to go anywhere without hearing sneezing, coughing and nose blowing. If you have yet to catch it, start dosing up on your vitamins now or better still, hibernate until March-ish!

Anyway, apart from the chest cold, I still have a low haemoglobin count and mysterious bruising on my legs – my consultant is keeping an eye on both of those issues. I’m hoping the haemoglobin sorts itself out soon as it has really affected my fitness training, I feel so unfit.

So, back to the question at the top. It doesn’t really require an answer as it’s more of a rhetorical question, but the fact is, we really have no idea what’s around the proverbial. It all came to a head this morning when I was as usual, listening to BBC Radio 5 Live on my drive into work. The headline news was that the Australian cricketer Phil Hughes, had died after being struck by a cricket ball two days earlier – he was only 25 years old. This news filled me with sadness, not because of his age but the fact that he had died from a ‘freak accident’, a blow to the side of his neck. Having heard this, I was trying to make sense of why it happened and why he had to die. And it was all borne out of what I went through and what had happened since my last blog entry.

The same week I posted the last entry, I received news that two of my friends within 24 hours of each other were diagnosed with cancer. One with Myeloma and the other with Uterus cancer. A few weeks later, a friends 7 year old son was diagnosed with Leukaemia. Each of those families are going through hell at the moment, and no doubt the family of the Cricketer is also going through hell. That radio report really hit home when it was juxtaposed with a news story about mindless violence and the David Mellor taxi driver rant. I couldn’t help but wonder whether some people could do with a little perspective and a little reminder of their own mortality. I’m not saying they should be struck down with anything nasty – oh god no, I wouldn’t wish it upon anyone, but if there was a way to make them realise how short and precious life is, maybe they would think twice about their actions. Wouldn’t the world be a better place for it?! God, I sound naive.. but that is what perspective does for you. I’m not saying I’m perfect, I’m far from it, but what I do know is that the way I viewed life 3 years ago is vastly different to how I view it now. I appreciate it for what it is, I enjoy life a lot more, but I’ve also developed a fear that I’ve never had before. The fear of not knowing what will happen next – to me, or to the people I love. It’s absolutely terrifying which is all the more reason to appreciate and treasure the life and the time you have on this earth. Like the cricketer, it could be snatched away when you least expect it. Nothing is beyond the realms of possibility. As the last few weeks has proved, no one is immune to freak accidents, illnesses or anything.

On that philosophical note, I shall leave you to ponder (or go to sleep)! Next time you see someone you care about, give them a hug and appreciate them, you won’t regret it – even if you do come across a bit weird!

… 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 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!

The swim start – I’m in there somewhere – towards the right side!

The swim exit into transition – I’m on the right trying to get my wetsuit off.

The 20km bike leg

The run – with foot and leg cramp!

After the race I somehow got back on my bike to cycle to the car!!

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.


Drinking and hanging out with some of the Game of Thrones actors on a recent work trip to Belfast!

Barbecuing with two lovely Northern Irish boys! Ade and his best friend Gareth.

Hiking in the beautiful Peak Districts (Hartington) last weekend with amazing people.

A photo from January of me and the bride with the Scottish Cup at St Johnstone’s ground. (Thanks Jenna for the photo!)

.. that’s what my consultant called it. Getting shingles seems to be part of the long-arsed merry-go-round that I’ve been on for the past two years. Just when things were going swimmingly, I’m struck down with something. What I thought was intercostal muscle strain from a particularly tough training session turned out to be a case of shingles.

So, what are shingles? Shingles is caused by the same virus that causes chicken pox and it is an infection of the nerves. The infection causes a huge amount of pain and also pox like spots to come up around the affected area. Shingles is contagious, but only to people who haven’t had chicken pox so on diagnosis, I was once again imprisoned in my own home to recover from it and not to infect the vulnerable.

(CLICK HERE for more information on shingles and its causes)

The turning point was when I was on the train to work in Glasgow for the Commonwealth Games. The pain on the right side of my back, side and chest got so unbearable that I had a breakdown on the phone to Ade. He convinced me to get off at the next station to seek medical help. I didn’t want any old doctor seeing me, I wanted to see my consultant as he knew about my condition and also because I have a distrust of doctors in general. So when I got to Warrington, I got off and caught the first train back to London. When I got there, I went straight to UCH where Ade met me to see my consultant. After an examination, he said I was in the early stages of shingles. As soon as he told me what was causing the pain, I immediately felt better and he did spend some time convincing me that the cancer hadn’t come back. I left the hospital with a bag of drugs:

Valacyclovir – a super strong anti-viral drug which helps fight off shingles.
Amitriptyline – this is an anti-depressant but prescribed to prevent nerve damage.
Co-codamol and Ibroprofen – strong painkillers.

Two days after seeing my consultant, I started developing pox like spots on my back and abdomen. Luckily the anti-vitals prevented a huge outbreak, I only had about 30 spots in total and most of which have now gone.

Nearly two weeks on, the bulk of the pain has gone and I’m just left with some residual nerve pain which I hope will disappear in time. I’m going back to work tomorrow and hopefully I can start my triathlon training in the next week too. I’ve been away from physical exercise for nearly three weeks and I’m starting to feel twitchy!

As the shingles came along at the most inconvenient time (not that there is a convenient time), I’ve had to withdraw from my first post-cancer triathlon, but I’ve already rebooked to compete in the Eton Dorney sprint on the 6th September. I made a commitment to my donors and pledgers that I will compete for Cancer Research and the Lymphoma Association, and I’m keeping that promise. So those of you who want to support me, you can still do it. Please CLICK HERE to do so 🙂

Aside from the shingles, my iron levels are still far too high, so I need to have a few more venesections – where I need half a litre of blood drained out of me every 3 weeks or so. This is what half a litre of blood looks like:


But apart from the health issues, I’ve had a good summer so far! Here’s a few photos of the summer for your viewing pleasure:

Watching Rafa Nadal on Centre Court at Wimbledon

Working at Glastonbury with the Metallica Club

Rocking the Glasto t-shirt!

Working at Knebworth House Sonisphere with the Metallica Club – Me and Ade

Cathcing up with old friends at Knebworth – Bill from Mastodon

A sunny wedding in Perth, Scotland – me and the blushing bride!