… 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!
In some warped way, The Wait by Killing Joke is a pretty appropriate song to have had stuck in my head the last few days. The song is reportedly about waiting for the truth to come out of politicians but I guess in my head the song is just about an excruciating wait for the results of my PET scan I had 2 days ago.
My PET scan went according to plan and without delay, I came out hungry as I had to fast for it. For those of you who are newer to my blog, the reason I had to starve myself is because it forces my blood sugar levels to drop. The glucose can affect the results of the scan as the radioactive dye that is injected into me before the scan can pick that up. The radioactive solution highlights any activity so it’s crucial I’m nil my mouth. After my scan, I went to the predictable Starbucks just down the road from the Macmillan Cancer Centre and got myself a coffee and a croissant, and I can’t recall the taste, I think I literally inhaled it!
The wait for the results this time round was hell. I’m always anxious when I’ve had a scan but this time I was a mess. I was already nervous beforehand but it really escalated afterwards especially as I haven’t been feeling too well. With the mixture of a crazy week at work, moving house, unpacking boxes, lack of sleep from worry and the stress of the scan, I had managed to run myself into the ground. After my appointment with my consultant earlier this week, I was under doctors orders to stop and rest. Very hard for someone like me to do but I forced myself to not look at the mass of unpacking that needs to be done and slept a lot which has done me a world of good. I had a personal training session today which I almost cancelled because I was almost ill with worry and I’m so glad I didn’t, that session took my mind off all the worries and anxiety for an hour!
Anyhow, an hour after my training session, I was given the result of the scan and I can now relax and breath!
1 year remission confirmed! I’m still cancer free! My doctors and I can now relax a little bit more because the longer I stay cancer free the closer I am to a cure! The cancer I had was very aggressive so the first year is crucial!
I actually cried when I heard! I’m so happy! Life is good, I’m in my new house, I’m a year out of transplant and I’m fittest I’ve been my transplant. This is like a new start for me, so I’m going to mark this occasion by publishing this and then do the Snoopy dance!
Stay safe and healthy folks.. Remember.. Life if precious, treasure it and have an amazing weekend!
(I’ve seemed to have gained a bunch of new followers so.. If you’re new to my blog and want a summary of what has happened and what chemo regimen I’ve had – check out Lymphoma Matters magazine. You can download it via this this LINK then click on ‘Download the Winter 2013 edition’. I’m the cover story of the article and I was interviewed last September about my journey through a rare type of lymphoma.)
I’ve been meaning to update you for weeks now but life has literally got in the way. It’s not like I have a buzzing social calendar but I’m back at work full time now. I drive into the office between 2-3 times a week and working from home the rest of the time, and even at that I’ve been finding it tiring. Last week, I went into work 3 days in a row due to unavoidable meetings, and although I enjoyed being back in the thick of things, I was glad to be home after day 3 knowing I would get an extra couple of hours in bed in the morning. It’s not the actual work that’s been making me tired, it’s the long days, the early mornings and not getting home till the evening. I think it’s going to take a bit of getting use to. My energy levels are actually very good, not to sound arrogant, but I have more energy than some of my ‘fit and healthy’ friends! On Sunday, I went to the gym in the morning and done an hour of boxing and pad work followed by a gruelling hour of spin cycle and I was still able to walk and function after! I can survive a brutal personal training session and run a couple of miles after the session too! Being physically active seems to suit me, sitting around staring at the screen at work hour after hour seems to suck the life out of me! I blame the artificial lighting and the Siberian air conditioning in the office!
I’m still seeing my doctor regularly as well. I had an appointment with my consultant last week after a blood test and she was really pleased with my results. I was quite nervous about that blood test because it was the first one after I was asked to stop my twice weekly injections of GCSF at home. She wanted to see if my neutrophils would stay up without the support of the injections and they did! It seems that my new cells have made themselves at home and stopped fighting in my bone marrow! Based on that, my consultant decided it was time to start weaning me off the immune suppression drugs I’m on. I’m now on 3 tablets less than I was on before, though I still seem to be on quite a high dose. Let’s hope when I see her again in a couple of weeks, she knocks a couple more off my daily dosage.
Today I had a nebuliser appointment. Most people have a sandwich at lunch, I had a lung full of ventolin and several lungs full of pentamidine. Felt a bit sick afterwards and I don’t think I helped it much by downing a large coffee with an extra shot of espresso! One needs to stay alert somehow!
Overall, my recovery has been going well. I’m back to exercising regularly and I’m starting to see more and more friends. I’m having less bad days than I use to which is good, but when I do have a bad day, it’s quite bad. Usually full of self-pity and self-depracating criticism. This is the side of cancer that the doctors – even the best in the country don’t tell you about. The fact that life can be an emotional roller-coaster for survivors. It’s never as straight forward as.. get drugs, get rid of cancer and carry on with your life. We have to deal with so much more. I’m not belittling the mental effects of cancer in older people – but people of my age and even younger have to deal with some of the effects that don’t affect older/elderly people. I was talking to a friend I met a year ago in hospital this evening over email, she’s the same age as me and had pretty much the same hopes and dreams that I did, and we both said that so far this year we’ve already some bad days. It can be caused by anything but that ‘anything’ can easily trigger off a reaction that links it all back to cancer, thus leaving you in the depths of despair. Her recent example was when her best friend announced that she was pregnant with twins and asked if she would help her organise a party to celebrate – I guess like a baby shower. Like me, my friend had high dose chemotherapy and can’t have children and although her friend didn’t mean to upset her (she just didn’t think), it was enough to send her over the edge. She sunk into depression for a few days and started to distance herself from pregnant friends or friends with young children. She managed to pick herself up in the end, but it just goes to show how vulnerable we still are and probably will always be.
I’ve had a couple of bad days this year already! I tell you about the first real bad day I had.. it was last Wednesday during my stint of working 3 days in a row in the office. It was a super busy week and I arrived at work realising I’d left my phone on the bedside table, I also realised I left my lunch in the fridge as well. I had a lot of work to do as well but no matter how much I did the load just grew and grew. I was also exhausted, discovered that Snickers have reduced the size of their regular chocolate bars from 58g to 48g and it was currently on day 5 (or thereabouts) of relentless non-stop rain. On the way to my personal training session after work when I wasn’t stuck in traffic, I was pretty sure I aquaplaned all the way to the gym. The traffic was so bad that I thought I would be late for my session but had no phone to call my personal trainer. Eventually, I made it in time, but got there to find that I had forgotten to pack my sports bra, water bottle and heart rate monitor. So by the time the session started, I was tired and PISSED OFF!
Anyhow, the point is, I blamed the crap that happened on that day on cancer. The tiredness and fatigue is because of cancer I know that for sure, and I’m convinced that my forgetfulness is down to the fatigue too, either that or the drugs I was given has altered my ability to be organised and remember simple things. It seems that everything I do, and everything that goes wrong I can always link back to it.
Another thing that I’ve discovered about myself is that I’m really paranoid now. Not a day goes by I don’t look at my abdomen to check for signs of a swollen spleen, not an hour goes by I don’t touch the side of my neck to check for lumps and when I wake up in the middle of the night, I check I haven’t soaked my pillow or duvet with sweat. I’ve never been a hypochondriac, but seriously, it wouldn’t surprise me if all the paranoia turns me into one!
This is what I call the ‘cancer legacy’. As a survivor (so far) I’m recovering, I learning about myself again. Not only have I got a brand new immune system, but I also have a brand new outlook on life. Although I’m grateful to be alive, I’ve changed so much. I like to think it’s for the better but I’m not convinced, I’m not as sure about myself as I use to be, I’m even less sure of my position in this world and what the point of it is. I know it sounds bleak but when you’ve been through what cancer patients have and what that disease has stripped you of, it can be so difficult to simply be grateful when every thing still feels so unfair and cruel. The big thing I am learning is that surviving isn’t the end of it all, there is no end. The continuation is that cancer, even if it’s gone, will always be there with you. Cancer has nudged me off the path I wanted to go down and has sent me some place else that leads to god knows where.. I guess in time I will find out.
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!!!
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!
No, I didn’t go join a religious cult (as the dude did in the book of that title), I actually journeyed to the east! This journey was another milestone in my recovery – a 12 hour flight from London to the other side of the world, Hong Kong. As you’ve probably gathered from my last blog, I was incredibly excited about this and a little nervous too, I was flying to a place thousands of miles away from the safety blanket of the hospital that has been looking after me. This apprehension didn’t last very long, once I landed in Hong Kong and felt the rush of the sub-tropical heat, I felt alive, happy and memories of the nasty year I’ve had appeared to have been left at the boarding gate at Heathrow.
As soon as we arrived and collected our luggage, we went for a coffee and found a Starbucks! How sad is that?! We were in this metropolis of food and drink and we go to a bloody Starbucks!!! We then took a taxi back to my home in Hong Kong. I remember sitting in the cab looking out the window and seeing the familiar sights feeling the happiest as I have felt in a long long time, this was going to be a good trip, a positive trip, and it was.
When we got home, we were greeted by my grandparents. This was the moment I’d been looking forward to the most as I know they had been worried and they wanted to see with their own eyes that I was ok. Grandma kept hugging me and fussing over me, then he started hugging Ade telling him what a good husband he has been and how well he has looked after me. It was quite emotional seeing how happy they were that I was there alive and well. Looking into my grandparents eyes, all I could see was relief – I know it’s a funny thing to say, but hell, over the last year, I’ve gotten pretty good at seeing what fear looks like!!! The following evening, Ade and I had dinner with my grandparents and after dinner, I had a good chat with Grandma. We chatted about my health, my recovery and going back to work. She then said to me that now my health is kind of back on track, I should start thinking about having children. This completely took me by surprised, I suppose in my ignorance, I presumed that she would know how aggressive my treatment had been or that my parents would have told her I have been left infertile, so I found it very hard to tell her that I couldn’t give her any great-grandchildren. It broke my heart all over again. I was glad that when I did explain it to her, she understood and said that the main thing was, she still has her oldest grandchild and that I’m still precious to her. I know I shouldn’t, but the reminder I can’t have children always makes me feel like I’ve let people like Ade, my parents and my grandparents down.
The following day, I went to Che Kung Temple. Che Kung Temple was where my dad went to last year when I was first diagnosed. He went there to pray for me, get my fortune told and also to light a candle for me. When he went there he sought guidance from a monk to see if there was anything else he can do, not just to seek comfort but to help me. On his visit, he told the monk that I was ill and on telling my fortune, the monk said that I had a serious illness and that I had a long road ahead of me but I will get better. He also said that after the 8th month of the next lunar calendar, I will be ok and that my dad or I must return to the temple to pay penance (if you like), to the gods and idols my dad has pleaded to help. The funny thing was, when my dad went to the temple last September, my treatment was scheduled to end in December which is the 10th or 11th month of the last lunar calendar, this confused my dad as the projection the monk gave him was another 8/9 months beyond what the doctor told me, but off course, this was before I got the second diagnosis that I had a super rare form of lymphoma and also months before I was told I would need a life saving stem cell transplant. As it turned out, the monk was right, I got my remission and clear scan during the 8th month on the current lunar calendar. So my visit to Che Kung Temple last week, was to thank the gods and idols. When I arrived at the temple, I didn’t have a clue how to go about doing this, so I found a monk and asked him. Out of all the monks that were there, the one I stumbled upon was the one my dad had confided in. I only told him that my dad was there last September praying for me and he pretty much finished the sentence for me. He remembered everything about his visits (dad went there a few times that week), he also remembers the desperation and sadness in my dad. This monk helped me with what I needed to do which including thanking and praying to the gods and idols in the temple, and he went through the rituals and chanted on my behalf too. It was a very spiritual feeling and afterwards I felt as if this was another chapter that I had finally managed to close.
I probably sound like a complete nutter to some, but Buddhism is a huge part of my life and the ritual meant a lot to me. That day was the defining moment where I felt I could properly start this new chapter in my life.
The rest of my stay in Hong Kong was fantastic, the weather was great (32 degrees celsius every day) and beautifully sunny. Ade and I shopped, met up with friends, visited fishing villages, the city, ate a lot of food and went to Disneyland! I was walking every where, staying out late (even enjoying the odd tipple) and generally enjoyed myself. I said to Ade on several occasions that I felt that Hong Kong was helping me get fit again, I had bags of energy and a new lease of life. I had no issues with my health at all, a bit of jet lag when I arrived, but that was it, I think it helps that Hong Kong is very clean and paranoid about cleanliness (blame the sars outbreak 10 years ago), I hadn’t felt this good and happy for a long long time.
I could have done with another week away, but unfortunately I wasn’t allowed and still have to attend clinics most weeks for check-ups, so the fun and games had to end. A 12 and a half hour flight home, I land in a rainy cold 12 degrees celsius London feeling glum. The following day, I wake up in my own bed with the worse cold I’ve had in years. A couple of days later, I’m still sniffling away but feeling much better – my consultant is going to be impressed when I see her tomorrow isn’t she?!?! Ooops!
Obligatory photos… Enjoy!
My grandparents, Ade and I.
At Tsim Sha Tsui waterfront looking across Victoria Harbour. Ade proposed to me not far from here back in 2006 so this place has a lot of happy memories for me. Also it has been my favourite view of Hong Kong ever since I was a little girl.
Relaxing at Stanley, a fishing town in the South of the island.
Discovering my inner child at Disneyland!