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!
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!
“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!
Getting older and feeling it this week! Yes I know 33 isn’t that old but oh my, I feel it. I think a lot of it is to do with overdoing things over my birthday week. I was out and about for a good part of a week which is the most I done since getting ill, and I think it’s caught up with me.
Last weekend, I had a meal out with friends on the Saturday and had the latest night out in over a year, the following day Ade and I went for afternoon tea at The Dorchester hotel which was fantastic. On the Monday I was in hospital for a check up and my monthly nebuliser appointment. The nebuliser is a breathing apparatus where I’m given a drug called pentamidine to inhale. It takes about 45 minutes in total and the aim of it is to protect me from respiratory illnesses like pneumonia. I have to do this every month until I no longer need my immunosuppressants. Talking of immunosuppressants, my dosage has now been lowered so my consultant has already started weening me off them to see how my new stem cells react with my body. Overall, it was a good appointment where everything in my recovery appeared to be going the right direction. On Tuesday, Ade and I took a trip into my work to see my friends and discuss with my bosses about the ‘going back to work’ issue. That was my first time back in the office since I left the office last summer to go to that fateful appointment where I was told I have cancer. It was actually great to be back and see everyone, not least for the banter but for the meeting about getting things back to normal and working again. Not so long ago, the idea of a semi-normal life (the department I work in is NOT normal!!!) was completely absurd! After the little visit to the office, Ade and I had a mince around Westfield for a bit before going home.
Since the middle of last week, I’ve generally been feeling fatigued and I’m pretty sure it’s because I’ve done so much. That’s the problem with me, I am forever being told to listen to my body and to take things easy but I inherited the ‘restless run before walking’ gene from my dad, so it’s incredibly hard for me to listen! Ade says it’s stubbornness, I call it being strong-willed!
Over the weekend, the fatigue has stayed with me and I’ve noticed my appetite hasn’t been great. I’m not eating three proper meals in one day, instead, I would have a tiny breakfast just because I have to otherwise I would get an upset stomach taking tablets without food, a small lunch or a snack and a proper meal in the evening. I’ve found that the mornings and earlier on in the day the worse for tiredness and appetite and this showed when I was weighed today. I’ve lost a little bit of weight in the last 7 days. I discussed this feeling with my consultant today and explained that my digestive system hasn’t been feeling 100% so I’m being tested again for C. Difficile as I could have another reoccurrence of it. Ade had a stomach bug last week and my consultant said, I could have caught that, I should find out tomorrow and I’m sincerely hoping it’s not the onset of graft v host disease (where the donor cells are fighting my organs/own cells).
I felt really tired earlier on today but feel much better now which is good because tonight I’m going out with my parents-in-law. They came over on Saturday from Northern Ireland for a visit so we are spending as much time with them as we can. Great thing is, they like a relaxed and quiet life, so spending time with them isn’t going to tire me out as much as my crazy friends! I have Ade to keep me in line and nag at me – in the nicest possible way of course!
Although the last week hasn’t been the best energy and health-wise, it hasn’t been too bad. My consultant said a while ago that I’m expected to feel great some times and not so great other times so it’s not out of the ordinary.
I’ll leave you with a couple of photos from my birthday week. Hopefully the next time I blog, I will feel a lot more positive and my feeling of fatigue and appetite has improved.