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!
What a busy month it has been! I figured it’s been a while since I last blogged so I better write an update, especially as some of you have been wondering if I’m ok.
Well I’m please to report that I’m still alive and kicking, in fact I’m kicking hard! 2 days ago it was Christmas Day which I spent it with my in-laws and had a great day of eating and drinking. It’s hard to believe that the same time last year I was in palliative care in hospital fighting for my life. Ade and I have talked a lot about that period recently and it really puts into perspective just how lucky I am to be here today. To remind you what I went through last Christmas and New Year, here’s the blog I wrote when I came round days later:
In the last two months, I’ve been back to work, going to the gym, I have a personal trainer, signed up to run the 6 mile Sport Relief next March, been out to parties, attended the BBC Sports Personality of the Year Awards and now relaxing at the K Club with Ade before resuming the hectic life we both lead in January.
Health wise, I’ve been ok, I’ve had the odd sniffle and cough but I guess it’s pretty normal for this time of year. Main thing is I’ve been able to shake them off fairly quickly despite my compromised immune system. I’m still up to my eyeball on immunosuppressant drugs and judging by my most recent blood test, I’m hoping the improvement in my neutrophil counts mean my consultant can start weening me off them in January and reduce the number of my injections to once a week as oppose to twice. Im still being closely monitored by my consultant but I’m now only seeing him twice a month at the most.
I’m coping very well with the fatigue as well. A lot of people (Ade and my bosses in particular) have been worried about how I would cope going back to work, but so far so good. I’ve found that getting real exercise and going to the gym has helped with my fatigue. The only issue I’ve had is the commute to and from work. I find that commuting more than 2 days in a row tends to wipe me out a bit, but I think that’s more to do with getting less sleep the days I get up early to beat the rush hour traffic. The true test will come in January when I go back to work full time. I’m quite excited about that, it’s another step towards normality and another step away from the lure of awful daytime tv programmes.
My fitness regime is going well too. I recently managed to run 2 miles non-stop which I was ecstatic about. I never thought an achievement like that would make me feel so good considering I use to be able to run double that distance as a warm-up, but to hell with it.. 6 months ago, I could barely walk. I go to Pilates every week now too as it has been helping me regain body strength, flexibility and balance. My personal trainer is a godsend, I honestly don’t think I could have got as fit as I have got now without his help and I’m so happy that he’s now at the stage where he treats me the same as his other clients. I still have a long way to go, but I’m getting there. Unfortunately it’s looking unlikely I’ll be doing any triathlons this year as I’m still not allowed to use the pool but I’m content enough to get the runner out of me first!
So here we are, at the arse end of 2013! I don’t tend to celebrate New Year as it’s just another one of those commercially hyped days where drink prices are hiked up and you’re given a free license to act like an alcohol fuelled gibbon, but this year is going to be different. This time I’m going to celebrate the start of 2014 as a survivor (oh crap Eye of the Tiger is stuck in my head now) and appreciate everything I have, after all, I never thought I would see it.
I know many of you have also had a crap year, so on that note, I’m going to finish off this post and wish you all a healthy and happy new year, but more importantly say a big F YOU to 2013!!
It’s only been a few days since I last blogged but it feels like it has been weeks. The last two days of chemo completely took it out of me. I think I kind of fooled myself into thinking this would be a walk in the park as my consultant said that the chemo I was getting wasn’t anywhere near as high dose as the one I got last year.
The first day went ok, but I started to feel awful on day two. The nausea had got much worse, I had no appetite, due to the amount of fluids being pumped into me I barely slept, so I woke up the next morning feeling incredibly ropey. The worse thing was the nausea as it’s not a fleeting symptom that comes and goes, it’s constant and always there and for those of you who’ve had it, imagine having that all the time. I haven’t had chemo for two days and it’s still with me despite the fact I’m still on a high dose of anti-sickness drugs.
Day three of chemo was probably the worse day I’ve had this week, I had another night of broken sleep as I was still on fluids, but I noticed at around 3am in the morning during one of my toilet breaks that when I looked in the mirror I couldn’t see my cheekbones and that my wedding and engagement rings were extremely tight when they’re usually very loose. I also noticed a nasty burning sensation when I passed urine and when I tested it, it showed that it contained a trace of blood. I contacted the nurse who then contacted a doctor to prescribe me some drugs and something to protect bladder. The Ifosphamide infusion I was being given has a tendency to irritate the bladder causing a urine infection which is apparently very common. On top of that, I had a bad case of water retention. The nurse checked me over and my face, hands and legs were all swollen so I was given diuretics through an IV, and I have to say that there’s not much I’ve experienced that can be more uncomfortable than having horrible burning when passing urine 2-3 times an hour for about 4 hours. I managed to expel about 3kg (just under half a stone) of excess fluid that was being retained in my body and although I felt better and a lot less swollen, it left me completely drained, exhausted and dehydrated. I was still on a fluid drip and found it hard to drink more fluids to replenish my body.
Day four was the day I was meant to go home, but I was being kept in for a couple of reasons. First one was that I had a temperature spike overnight and second, I had a really funny turn during the day. My consultant came into see me and pretty much said I was to be kept in for observation. My funny turn happened after I had a hot shower and during a visit from the nutritionist. In the middle of her preaching to me about build-up shakes and saying I really need to make a better effort at putting on weight for the millionth, I pretty much collapsed. I have no idea what came over me, I was hot, disorientated, head felt funny, couldn’t see and fainting. The nutritionist saw I was about to pass out and ran to get a nurse and the next thing I knew, I was being helped to my bed and that I had managed to throw up half a carton of Ribena I downed moments before (sorry you probably didn’t need to know that but I did say my blog was going to be an honest account). After that little episode I was even more exhausted and managed to contact Ade as he had been trying to get hold of me. As soon as I told him what had happened, he pretty much left work and rushed to be with me. I spent the rest of that day dozing in and out of sleep, I probably wasn’t great company for Ade but just knowing he was next to me made me feel safe. It’s amazing when you think about it, hospital is somewhere you should feel the safest when you’re unwell, but there’s something about having someone with you watching you and looking after you that makes things seem safer and better.
The next day (yesterday) I was feeling better. I had less breaks in my sleep and I wasn’t feeling quite so terrible. I felt even better when the doctor came by and said I could go home. As you can imagine, I was packed up and ready before my prescription was even ready. I waited for Ade to pick me up and here I am.. At home.
Since being at home, it’s not been that easy but I take that for being around everything that is familiar and comfortable for me. Yesterday, the post-chemo fatigue hit me really hard, I could barely walk from the kitchen to the lounge without my breathing and heart rate going up. Just this lunchtime, I went to make my own lunch as Ade went into the office this morning and I felt myself passing out, so I rushed to the lounge and sat down, I went back into the kitchen as soon as I got my composure back and the same happened, so I sat down and rested for longer before going back. I have no idea what caused it but I presume it was a mixture of me trying to do too much too soon and that the kitchen was too warm. I had washing to hang out today but decided to leave it until Ade got home, for once I’m going to listen to other people and accept help when I need it.
Apart from the funny turns my temperature has been up and down. I have to monitor it every 4 hours in case it develops into a fever as it could be a sign of sepsis or infection. For the most part it’s been quite normal but for some reason, it seems to hover dangerously close to the 38 degrees in the evening. I’ve no idea why but it makes me nervous, not least that I don’t want to get ill but I don’t want to have to go back to hospital so soon. Fingers cross it stays 37.5 and below!!!!!
Resting aside, I have a huge carrier bag full of drugs I need to take everyday. I’m on something that lines my stomach, protects my kidneys, anti-sickness, antibiotics and I’m now injecting myself everyday with GCSF to promote stem cell growth. I’m back in hospital for blood tests on Monday, then after that, have no idea, it all depends on what my neutrophils levels come back as, if they’re really low and I am neutropenic, my consultant wants to admit me until my immune system starts growing. Most people on this chemo regime get to incarcerate themselves at home even during neutropenia but as my track record shows, I have a habit of getting incredibly ill during that time, seems my consultant feels I can’t be trusted!
I’ve never been one to have problems sleeping but in the past month I can’t say I’ve slept well. In hospital I barely slept, I saw every hour and the gaps where I did sleep I had strange nightmares about not being able to sleep. To this day I’m still wondering if they were nightmares or if I was just awake but slightly lucid from all the drugs.
Since being at home, I thought I would sleep well, but I haven’t been. The first few nights I was up constantly with temperature spikes, and the past couple of nights I’ve had to get up twice to change my sleep clothes due to the night sweats I’ve been having. Last night, I had two night sweats between around 11pm and 3am. Poor Ade had to get up at 3am to change duvets and sheets over so I have something dry to sleep on. I slept all the way to 9am this morning after my last night sweat and that is the longest period of sleep I’ve had in weeks.
Despite the sleep, I was still feeling tired and frail but luckily felt better than I did the day of my PET scan. Mum and dad came round again this morning, they knew I was going to see my consultant about the PET scan I had the day before so wanted to see me off and I suspect check I was ok. When Ade and I left, we left them behind, I suspected mum and dad would clean and pick up dirty laundry for us. A huge help.
Ade and I got to the Macmillan Cancer Centre in good time. The journey in was ok but it was so cold out I spent the whole day feeling as if I was chilled to the bone. I wanted to go and see the consultant, find out the result and just go home, but the day turned into a much longer day.
Ade and I got a drink when we got to the Macmillan Cancer Centre as we were so early then headed up to the private floor to wait for the appointment. The short wait was agonising and I was so worried I just couldn’t help think the worse that the cancer was back as it became resistant to the chemo. I remember looking over at Ade and saw a hint of worry too, he’s usually so composed and positive.
When the appointment came along, my consultant went through my original PET scan I had way back in September before i started chemotherapy, then showed us some of the images from the current scan. The doctor said that I had responded well to treatment I’d been given and from the current scan, there’s no evidence of disease in the majority of areas that were originally affected. However, the scan showed up two areas where there’s cause for concern. The scan lit up a small area in my spleen which could be cancer, but the scan wasn’t conclusive enough to say for sure. Another area the scan lit up was a lymph node in my neck. I knew the lymph node was inflamed before the scan as it appeared in the middle of my Christmas and New Year hell but it had shrunk since then. My consultant said it could be cancer but it could also be inflamed because it may be fighting off infection I may still have. Either way, he was concerned enough to book me in for an ultrasound and a biopsy two hours later. At the appointment, we also talked about my energy levels and how frail I’ve been feeling and he assured me that it will take time to regain strength, after all I spent days in hospital seriously ill in bed only moving to go to the toilet. He also said that the high dose of chemotherapy had taken it’s toll so it’s to be expected but he said if I eat more, in a few days I should start to feel better and look less pale. We also talked about options too. If the biopsy results are clear, then he will push on for me to have a stem cell transplant as soon as a donor is found. If it turns out that some of the cancer has come back, I will be admitted straight back in hospital for a new chemotherapy regime. So whatever happens with this biopsy, there are options and plans in place.
After the appointment, Ade and I got a cab down to Harley Street clinic for the neck ultrasound and biopsy. The doctor checked around my neck and luckily only found the one that was causing concern. I was given a local anaesthetic which hurt like hell, then had a big fat needle stuck in the node of my neck to extract samples. In all I think he took about 6 samples which when you look at them, look like maggots in a pot. I had a neck biopsy before when I was first diagnosed, but this one was far more painful. As the node was quite deep in my neck this time, he had to use a lot more force to extract the samples. Once the biopsy was done, I was sent on my merry way. It will take a week to analyse so I have another appointment in a week with my consultant to discuss the result. So I guess, I’m in limbo until then.
In the meantime, the anaesthetic on my neck has worn off and I have a very sore and swollen neck now. I’m at home with my feet up as I’m so weary and drained. I really hope the doctor is right that over the coming days I will start to get stronger.
I have the best lymphoma consultant in the country and for the time being, me and Ade are putting all our faith in him. Despite the fact I have a rare type of lymphoma which is extremely aggressive, he’s still treating to cure and I guess that has to be something.