.. 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:
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!
It’s hard to believe that we’re coming to the end of February, and it’s also hard to believe that it has been 9 months since I had my stem cell transplant. To coincide with that, I had a PET scan today which will probably explain to some of you guys why I’ve been excessively tired the past week and at times, a bit on edge. Truth be told, I thought the anticipation of PET scans and the wait for results would be something I’d get use to over time, but the more of these I have the more anxious and nervous I get.
I’ve had the scan appointment for weeks now so I knew it was coming, but it’s always the way, a week before the actual scan, I turn into a nervous wreck and a raving insomniac. I can probably count on both hands and feet exactly how many hours of sleep I have had in the last seven nights. Last Thursday was the worse night I’ve had in months, I didn’t sleep at all. I bumbled out of bed on Friday morning to go to work feeling like a zombie which is impressive as that meant I’d actually bypassed the ‘feel like utter crap’ stage. It wasn’t until I got home that night I managed to give myself a fright when I realised that I couldn’t remember the drive home at all. It was all a blur! I remember leaving the BBC car park, parking on my driveway but nothing in between.
The scan today went as well as scans go, there were no delays and no surprises, but I did find it slightly sad that as I’ve had so many of these, the staff in Nuclear Medicine all know me now – we chat like we’re old friends! During the preparation, I was given the usual radioactive injection then I was rested for an hour before the actual scan. During the ‘resting’ period, another girl was brought in and set up in the cubicle next to mine. This made me feel really sad as it took me back to the first PET scan I ever had. She was only 28 years old and it was her first ever scan. The nurse took her through all the questions and explained what a PET scan was, what it involved and how long it would take. She sounded so scared and confused that my heart broke for her. I really felt like getting up to give her a huge hug and tell her it’ll be alright as long as she stays strong. It was only then I realised how much time had passed since that was me. Although these scans send my stress levels through the roof, it’s nothing compared to the anxiety I felt waiting to have my first PET scan and finding out the extent of the disease.
Anyhow, until I get the results, I doubt I’ll sleep well, but it’s worth a try! So this is me signing off for the night! I’m hoping I’ll get the results tomorrow, so in the mean time.. Wish me luck and send some good healthy vibes my way!
I only had the PET scan yesterday and I wasn’t expecting to find out so soon, especially after the debacle that was the actual scan itself.
I arrived on time at the Nuclear Medicine department at UCH and straight away I was told there was a delay in my scan due to issues with the radioactive injection. I was so disappointed as I was already starving due to being nil by mouth for several hours. I sat down in the waiting room and waited the extra 90 minutes and in that time I was sat next to a woman chomping on a massive sandwich and a packet of cheese and onion crisps. I was seriously tempted to grab it and smash it in her face. I was hungry and irritable and I thought it was really insensitive that she was sat there waiting for her friend who was being scanned and teasing hungry patients in the waiting room with her picnic. I could see a few dirty looks from other patients who didn’t seem too impressed with her. I eventually got scanned and spent almost every minute since worrying about the results. I had a crap night sleep and been pretty scatty today because of it, I even managed to spill an enormous cup of coffee over my desk at work!
On the way home today, I had a phone call from my transplant nurse to discuss my results..
I’M STILL CANCER FREE AND I’M STILL IN REMISSION!!!
UCH Macmillan Cancer Centre is undoubtedly the most impressive state of the art hospital I have ever seen. Everything is new and shiny and the staff are incredibly friendly. This is a far cry from the hospital I was being treated at before which was an old Victorian building steeped in history.it was one of those places that even though was very clean, it didn’t look it as it’s such an old building.
Although I was impressed, I spent the day anxious as I was faced with an unfamiliar scenario where I had no clue what my treatment would be. The ambulatory care unit which is where I will be getting the chemotherapy was quite busy so I was subject to a wait before I knew what would be happening. After a little while, I spoke to a haematologist who explained to me what would be happening and I got a nasty shock. Originally I was under the impression I would be here for 1 night whilst I get the chemotherapy, but turns out I be here for 16 nights in total with a small possibility I may be allowed home for a couple of days in the middle of the cycle. The doctor handed me a timetable of what will be happening each day, so my chemotherapy is now the regime called the CODOX-M-R and IVAC/R and not R-CHOP. Luckily I’m not staying in a ward. The beauty of being in such a state of the art facility is that it also has a hotel attached to it called The Cotton Rooms. The Cotton Rooms is a 4 star hotel which the hospital owns, I don’t have to pay to stay in there and the idea is it give patients like me who need regular treatment more freedom to come and go, have relatives stay with me as well as having medical help nearby in case I need it – including the same ‘quick buttons’ you get in hospital wards which call for nurses and doctors if I need them in the middle of the night. Sounds good? Well I’ve already been told that I won’t be there throughout my stay, due to the nature of the treatment, I will end up so ill (neutrapenic) that I will end up in a ward at some point. CLICK HERE to see The Cotton Rooms website.
Right now.. I’m in the middle of day 1 of chemo. I have my own room and ‘Britain’s Empty Homes’ is on the TV. I’ve just ordered lunch.. Lets hope the food here is as good as the hospital or I suspect I probably lose more weight! On my drip now, I have saline solution going into me, and next up I have Doxorubicin.
This is what my schedule currently looks like for my new chemo treatment:
Day 1: (today) Cyclophosphamide, Vincristine, Doxorubicin and Cytarabine. The first 3 are drips and the last one is the spinal tap.
Day 2: Cyclophosphamide.
Day 3: cyclophosphamide and the spinal tap.
Day 4: cyclophosphamide.
Day 5: cyclophosphamide.
Day 6 and 7: Nothing. If my blood count and immune system are ok, I may even be allowed to go home.
Day 8: vincristine.
Day 9: Nothing.
Day 10: Sodium bicarbonate hydration and Methotrexate.
Day 11: Sodium bicarbonate hydration, folinic acid and Rituximab.
Day 12: Sodium bicarbonate hydration and folinic acid.
Day 13: Sodium bicarbonate hydration, folinic acid and GCSF injection.
Day 14: GCSF injection.
Day 15: Methotrexate and GCSF injection.
Day 16: GCSF
After all this, I have about 5 days for my blood count and immune system to recover before I get another round of chemotherapy. This round is the CODOX-M-R. The next round is different to the above and called the IVAC/R, but after the next one, I will go back to the above again. I now have 2 types of chemo which stagger as I go on.
Luckily I don’t need to have cannula’s in my arm. Yesterday I had a PICC line fitted in my arm. The line stays in my arm for the duration of my treatment and enables treatment to be administered intravenously. Also means that whenever I need blood taken, it can come out of the line without the need to stab my veins to pieces. This line/tube goes in above my elbow and the line is threaded through a large vein and ends up just above my heart. Apparently this is the safest place for it to go but the major advantage is that it can stay in and save my veins.
The PICC line is fitted using a local anaesthetic, takes about an hour. It’s quite an intricate process as they need to make sure the line ends up where it’s suppose to. The doctors use ultrasound and ECGs to ensure that, then a final chest X-ray to ensure its sat where it’s suppose too. I was quite impressed with the precision. For more info on PICC lines, CLICK HERE.
Here’s a photo of my PICC line.
How do I feel? The hair issue?
Well the hair issue I’m getting use to, I now have a scarf headband on to cover the thinning on the top of my hair. I’m losing more and more hair now and soon won’t have any. Last night I had a bit of a wobble about it and managed to convince myself how ugly I looked but Ade calmed me down and assured me that it wasn’t as bad as I made out. Hair aside, yesterday evening I had a really bad spell, or rather a complete meltdown. The enormity of being away from home for so long and being given days worth of aggressive treatment was just too much to take and ended up in floods of tears. I was tired and upset and I felt as if this would never end and that I would be battling cancer for the rest of my life. I even managed to convince myself that this will eventually kill me and that I won’t ever get my life back. Ade was fantastic, he talked me down from that and was there for me. I really couldn’t do this without him, he’s been my saviour. Looking back today, I could see how irrational I was being as I feel more positive today after a good nights sleep, but I have to accept that there will be days where I will crumble and I just hope that on those days, Ade is here to pick me up from that hell because when that happens, I just don’t want to go on anymore and it is hell in its truest form.
So.. I’m back in hospital as planned to have my second session of chemotherapy and as I’m sat here in my hospital bed, I’m listening to Metallica (Prince Charming on the Reload album if you’re interested) and willing the Rituximab to finish filling my veins. So far it’s been going for about 7 hours or so and I have another hour or so to go. My consultant said that a lot of patients get this administered in 2 hours so it goes to show how rubbish my tolerance is! For those of you who haven’t a clue what Rituximab is, it’s an antibody (one of the monoclonal antibodies) and is used as part of chemo treatments for cancers such as the one I have and has been around for around 10 years or so. What this antibody basically does is tell my body which cells are cancerous so it can destroy them, so even though it cripples me if administered too quickly, it’s actually my friend! I was meant to be staying in hospital overnight, but the doctors and we have pretty much decided that once the Rituximab has finished and my cannula is removed, I should go home to rest as I have a bit of an upheaval tomorrow.
As most of you know, I’m not the straight forward type of girl and that at times, there has known to be some kind of twist, today has given me that twist. From tomorrow onwards, my main consultant will change and I will no longer be treated at my local hospital, which is sad because I’m in one of the best hospitals in the area for cancer and the team here are amazing. But on the flip side, my care will be transferred to one of the leading hospitals in the country for cancer care – University College London Hospital Macmillan Cancer Centre (UCH). I’ve since found out that UCH is where my current consultant here trained at.
I was told of this transfer when I came in this morning, my consultant came to see me, then explained that his team and the team in London studied my notes, scans and test results and discovered that my lymphoma was more advanced than they originally thought. I’m not 100% sure of what they found exactly as the moment he said “more advanced” my brain started filling with dread, worry and worse case scenarios, but I understood that my DNA is involved and that there was an abnormality in the B cell which they found either poking around my bone marrow or the spinal fluid they took a couple of weeks ago. I also understood that I do have Non-Hodgkins but it’s a type that is hovering somewhere between Non-Hodgkins and Burkitt’s lymphoma. This means that the R-CHOP chemotherapy I’m planned on isn’t strong enough and that I will now be getting a different type and stronger chemotherapy which is best suited to targeting this type of lymphoma. My consultant explained the strength of this type is similar to what is used to treat leukaemia, he also said that this treatment isn’t widely administered due to the precision nature of the dosage required and that UCH being specialists in this field means I would need to go there for treatment. Well if that is the best place for me, I’m going in for the fight.
When I get to UCH tomorrow and see my new consultant who I incidentally met when I went for a visit last week, I will find out more about this type of lymphoma and its proper name for you. Maybe give a better explanation as to what it is.
So there you have it.. An upheaval before my second treatment even started.
Before I sign off for the day.. Update on my hair.. It’s continuing to thin but rather than being upset, it’s making my OCD at home worse.. I’m a clean freak so I’m constantly picking hair out of the carpet.. Oh dear.. My mum does that and I appear to be turning into her 🙂 I’m wearing my hair with my favourite scarf today which most of you know is my Alexander McQueen skull scarf, it actually looks ok as a hair band around my head, it’s certainly preventing me from fiddling with it which makes the hair falling out worse. I had my wig fitting yesterday and because I have a big bonce (head – to anyone not British), it needs to be stretched, but it should be ready next week.
46.9ml at 36ml an hour of Rituximab to go, then they can ‘flush’ the line (clean it out with saline solution), cannula out and I can go home and get ready for 2 days at UCH. It’s a stronger treatment so I will probably feel like hell for a week after that.
Wish me luck!