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.
My last post was brief but it spoke a million words and provoked many feelings including elation, relief, happiness.. that’s why I didn’t feel the need to write much about it. I think a lot of my regular readers will know the routine by now, after all, I have had that many PET scans – seven in fact, which when you think about it, it’s rather astonishing. But in a way, I’m glad that they’re keeping an eye on me and I’m still alive to have them. I have my next one around the first anniversary of my transplant. If that’s clear, it will give me even more breathing space. My consultant basically said, the more remissions I get in the first year to year and a half, the chances of the cancer coming back reduces. I just need to make it to that 1 year mark.
As I said a few blogs ago, this awful disease leaves a nasty legacy of paranoia. I was once that girl who never really got ill or who would just motor on at the first sign of a sniffle, but now it’s almost pure panic to the point that I stroke the sides of my neck several times a day looking for those tell-tale lumps which had caused me several months of hell. Every morning the first thing I do is check my neck, I should be like every other woman my age – checking my phone or Facebook. I find myself checking throughout the day and quite often I don’t realise I’m doing it and it’s also the last thing I do at night too. I was thinking to myself recently that I really need to let it go and maybe relax a bit, then when I woke up this morning I found swollen glands under my jaw and I completely panicked convinced the cancer was coming back. Just as I was about to go into a complete meltdown, I noticed that my throat felt a bit scratchy and that it was a little painful swallowing. I somehow managed to coax myself into calming down and thinking rationally and I’ve been semi-ok all day, though I’m still obsessively stroking my neck. My glands have probably swollen up because of my throat, the glands are under my jaw so they aren’t the lymph nodes that were riddled with cancer all those months ago, the glands are most likely more sore now because I spent all day touching and poking at them. So, I’m going to give it a few days and hope that the throat gets better and the glands calm down and then I can relax a bit more, then mention it the next time I see my consultant. If however, it’s still like this on Monday, I’ll call the UCH transplant team because I guess it’s better to be safe than screwed again.
I’m still a bit spooked and yes, paranoia has gone through the roof once more, but at least the major panic is over for now. A few friends have said I might be run down, so maybe a few nights of extra sleep will help me recover, after all I’ve had a very busy 10 days. This is what I’ve been up to:
-Went to the Aviva in Dublin to watch the Ireland v Italy 6 Nations match, flew home on the Sunday night.
-Flew to Belfast on the Tuesday and worked there for 3 days amongst sniffling ill people and flew home Friday night.
-Traveled to Salford on Sunday night and worked at BBC North before coming home late last night.
I guess looking at that schedule with all the traveling, it was probably inevitable I would catch something with my compromised immune system, in fact looking at that, I’m surprised it has taken me this long to catch a bug. Time to look after myself – especially as I’m doing the 6 mile Sport Relief run on Sunday with 8 other friends! If I can run the whole 6 miles, it’ll be my first post-cancer sporting milestone. I’m not looking at breaking personal bests as I know I won’t get anywhere near them but it’s another step (run) in the right direction, so wish me luck!
Time to sign off, but before I do, just want to say a huge thank you for reading my blog. I look at the stats and comments regularly and quite surprised so many people still read it – especially as I don’t feel like I have anything interesting to say anymore – which is a very good thing because all the gory, more interesting stuff happened when I was really ill. But I’m glad that those going through chemo, radiotherapy and transplants still find my waffling useful and helpful!
Just want to say thanks to an amazing girl I’m proud to call my friend for fielding my emails today about swelling glands and panic. I met her through the Lymphoma Association and she continues to be a huge pillar of support.
Also want to say to hubby’s friend/colleague – Guy – hope the length of this blog makes up for my last one :p
Good night and here are some recent snaps for your amusement!
Scotland v England – 6 Nations Calcutta Cup match at Murrayfield a few weeks back cheering on England!
Ade and I at Murrayfield. Underneath Ade’s coat he has a England shirt on! We both agreed that he would wear an England shirt if I wore an Ireland one for the Ireland match!
In a kiddies Ireland jersey before the Ireland v Italy match at Lansdowne Road.
What a match to go to! Saw the last ever home appearance by Brian O’Driscoll for Ireland!
What I love the most.. Ade isn’t bad either!
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!!!
This time last year, the idea of going back to work was unfathomable, my only focus was to survive, and here I am relaxing in front of the TV after the start of my second week back at work. Most people I know hate the thought of going back to work, be it after a holiday, career break, maternity or whatnot, but not me, I spent the weeks in the run-up counting down the days! It’s a complete cliché, but having gone to hell and back, I have a different perspective on life and the things that you tend to take for granted and once, I did take everyday things like my job for granted. I’m not doing that again, I’m incredibly grateful that I’ve been given a second chance at life, never mind being healthy enough to go back to work – some people aren’t so fortunate.
So, work.. Last Tuesday was my first day back and I can honestly say that I was a bit apprehensive. It wasn’t like I was going back to my old desk or even the building I use to work in, I was going to a new building, new desk with new people in the team. But the extraordinary thing is, the moment I got in, sat down, caught up with friends, it almost felt as if I never went away. The familiarity was there but at the same time it felt good to be in a different building and sat at a new desk – in a way it’s symbolic – going back to my old life but starting afresh. And off course the familiarity was enhanced by the fact that none of the technology I needed on my laptop worked!!
At the moment, I’m only working on a part-time basis whilst my consultant, bosses and family continue to wrap me up in cotton wool. I’m hoping that in January, I can go back to working full-time, again this all depends on how I cope between now and then. So far so good, my energy levels have been very good and my concentration has definitely improved a great deal over the past few weeks. I worked 3 short days last week, attended a black tie livery event with Ade on Friday night, went to the England match at Twickenham on Saturday, a personal training session and gym visits in between all that and I still had the energy to go to work this morning! Despite that, I know I need to listen to my body because I’m still not out of the woods yet. I have my 6 month post-transplant PET scan in two weeks which I’m already getting nervous about – I really hope it comes out clear. If it does, I can make holiday plans for early next year and maybe think about going to more football/rugby matches in the new year. I’m not planning anything for 2014 yet as I don’t want to tempt fate. Anyhow, I’m going to try and put the scan to the back of my mind and finish this post with a few photos for your viewing pleasure!
It’s been about two weeks since I’ve updated this blog and I know some of you have been wondering if I’m ok. Everything is fine (kind of) it’s just been a hectic two weeks.
Not long after my last entry, Ade and I went to Scotland to stay with friends for a long weekend. Ade played golf and drank beer/whiskey with a friend, and I helped another with her quest to find her perfect wedding dress! A few days after our trip to Scotland, I met up with friends for two days of Metallica fun with the opening of ‘Through The Never’, then we had two days of birthday celebrations for Ade. Ade’s birthday weekend was brilliant, it started on Saturday hanging out with a friend who was over from America followed by a surprise party I organised for him when I was in hospital having my transplant. The weekend ended on Sunday with another day spent with some of fantastic friends.
Saturday was really special, not only was it a big birthday for Ade (40) but it was my way of partially ‘paying him back’ for what he’s done for me over the past year, though I highly doubt there’s anything in the world I could do that will show just how grateful I am. The party had been planned since the beginning of the summer and most of it was done from my hospital bed. I spent months trying to get our friends to keep the party a secret and even now I can’t believe we all managed it because trust me, there have been a few occasions where the stress of keeping it a secret has got to me so much I was just going to tell him. I’m so glad I didn’t because the look on his face when he walked into the venue and saw all his friends was priceless. Although Ade isn’t a big fan of surprises, he was ecstatic and had a brilliant night!
After a fantastic weekend, it was back to reality. I woke up exhausted on Monday morning with sore legs, a nasty cold and a general feeling of malaise. I really didn’t want to get out of bed, least of all to go to my hospital appointment for the check up and nebuliser appointment. My check up went ok today and my consultant wasn’t too worried about my cold. She basically said that half the country seems to have a cold so it was probably inevitable that I’d get it and that it would take an age to shake off. However, she was a bit more concerned with my actual immune system. Since my transplant, I’ve been having twice weekly injections at home. These injections contain GCSF which helps my bone marrow produce neutrophils which are essential to fighting off nasty bugs and infections, and for some reason my bone marrow is producing it, but they’re not surviving very long which isn’t normal. Two weeks ago, my consultant suggested that I could have Graft versus host disease in my bone marrow where my new donor cells recognise my neutrophils as ‘foreign’ and kills them off. My consultant then decided that they would try another treatment to see if it would help my immune system settle in a bit better and booked me in to have a IV of immunogobulins. Immunogobulins appear naturally in our body but after chemotherapy/transplant, it can take the body some time to recover them, some people don’t and have to have immunogobulin infusions for the rest of their lives (I hope I don’t). So last week, I had my first infusion. I was quite unhappy about this as it meant having to have a cannula in my arm and fluid pumped into me, I’d really hoped I would never have to have something like this again after my transplant, the only consolation is is that it’s not chemo, just an anti-body being pumped into me. On Monday, I had a blood test to see if the immunogobulins worked and the test showed my neutrophil count was for the first time on a Monday, above 1! My consultant said that it’s too early to tell if the immunogobulins are responsible. On the basis of this, I have now been given more immunosuppressant tablets to take which will take longer to be weened off. I was really hoping that I’d be off them by now, it feels like progress has been good and now I seem to have taken a little step back. My consultant said not to be disheartened, I’m still doing very well but my new immune system still needs a bit of support to get it up and running.
After my appointment, I went to have my monthly dose of pentamidine and ventolin through the nebuliser. This nebuliser treatment helps protect my lungs from illnesses like pneumonia and bronchitis. The whole thing lasts just under an hour and is actually quite unpleasant as inhaling the drugs can leave a bitter taste, but with the cold I have at the moment, I’m thankful for it especially since we’re now entering the season where everyone seems to be coughing and spluttering.
In other news, I’ve had an interview with an occupational health nurse at work to discuss my return work and it has been confirmed that I’ll be going back on the 4th November with a phased return (i.e. building up my hours). I’m hoping by the new year I’ll be back full time, but that all depends on how I get on and if the likes of occupational health, my boss and my consultant agrees on it. I really can’t wait to go back to work, not only is it a step towards normality but to relieve boredom! I honestly have no idea why anyone would choose a life of doing sod all, there have been times over the past year I’ve actually felt my brain turn to mush and craved mental stimulation.
On that bombshell, I’m off to watch Air Crash Investigation! As usual, some photos for your amusement!
“What don’t kill you makes you more strong..” So the song goes.. And hell, I hope there’s some truth in that because over the last year, cancer has at times broken me, beaten me up and left me scarred. In fact I still have physical scars up my arms, my ovaries have pretty much shriveled up, packed up and said “Goodnight Vienna” and the immune system I was born with has died. But apart from that, I’m feeling quite triumphant, and despite feeling like a geriatric having done several rounds with Wladimir Klitschkp most of the time, I’m feeling quite strong.
So, where am I now? I’m in complete remission – obviously you know that from reading my previous blog entry, and although myself, my husband, my family and friends have been jubilantly celebrating this news, it hasn’t escaped me that this isn’t the end and that I’m not out of the woods – but it’s a bloody good start. To be completely out of the woods, I need my scan in November to be clear, the one after that to be clear and every other scan in the next five years to be clear. Then we can say that I’ve been cured. So although this is a great start, you’ll still occasionally find me lurking around this blog and in my own world on tenterhooks hoping for the best. Over the next 12 months, I’ll still have to be careful as my immunity will remain as fragile as a baby, I need to wait another year before I can have all my immunisations again – yep, I have to have all the ones I had as a child all over again! (Does this mean I have to battle with my conscious whether I should have the MMR immunisations? Because in theory, I am a fully developed adult and if the MMR jabs do cause problems with development in children, it shouldn’t affect me?!? Hmmm moral quagmire!)
Anyhow, it’s not the end but compared to a year ago, things are positively brighter. In fact I was diagnosed with cancer exactly a year ago and my outlook back then couldn’t have been bleaker. Moving forward, I know I will have to battle with fluctuating energy levels, focus and concentration, I will at times have to battle with my head and cope with meltdowns and I will have to be prudent with my surroundings and keep away from contagious people – but this is a very small price to pay compared to what I had to go through to get to this point.
A year ago, I didn’t think I would see 2013 and now I have breaks in Hong Kong, Scotland, Northern Ireland and Copenhagen planned between now and November. Perhaps the biggest milestone is November when I’ll be rejoining the gym and going back to work – I can’t wait to establish some of the old routine and sense of “normality” though this time, I’ll be walking into it with a whole new perspective and immune system!
I have my routine appointment at the hospital tomorrow and an hour on the nebuliser (to protect my lungs and respiratory system), so I guess it’s bed time for me. I’ll try and blog later this week for another update before I go on my first post-cancer holiday!