Where have the last 3 years gone?
Seriously though time has just been flying and life has been full of ebbs and flows, so I am just thinking back to where I left off to fill you in, come on brain you got this! So following that fateful surgery in June 2017 when my tumours were benign my health seemed to take a downturn. I wouldn't say I was spiralling but I felt exhausted, more than I ever had before and I realised I couldn't run which didn't help my mental health either. In late December 2017 I made a decision (now I feel a rash one out of desperation) to try a drug therapy to treat my PV. So enter Interferon Pegasus, an expensive drug that I felt grateful to be able to try as many can't access these cancer drugs, so I do always count my blessings for my team at Guys, even if sometimes blessings can become curses. The drug worked well for my blood counts and at first I felt ok, I got to have an iron IV so that meant my iron levels and ferritin were better, but although on paper everything was great, my physical body wasn't a happy one. I made the decision first to reduce my dose then I told my team I couldn't cope and I came off the drug altogether. So what happened? My nemesis aka Migraines visited and knocked me sideways, if I wasn't having one, I was dealing with the migraine hangover, and literally getting migraine after migraine. I feel like looking back I spent 2 weeks on the sofa if I wasn't in bed, life definitely wasn't good. Friends came over to give me healing, bring me food and check up on me. I was signed off work as I couldn't possibly do anything let alone offer clients sports massages in their own homes. Being self employed at a time like this is some scary shit, and as much as the system is broken, I had to swallow any pride I had and ask for help. Obviously I was blessed to be able to get help, although you can't actually live on this and you definitely can't heal from cancer on benefits! Macmillan did give me a small donation which was very helpful at a time when I needed it most. I do believe that you never know when you may need help so I am glad I had worked hard paid my NI and donated to charity including Macmillan funny enough, so I felt like I was getting some of my money back... as odd as that sounds, that helped me feel better taking "handouts". So after that surgery I vowed never to have surgery again and that poor registrar is never touching me again, although I did have to have some surgery in 2018. I was more prepared and took my own distilled water and good plant based food in, think salads and tons of fruit. I was met with blank stares when I refused medication for constipation, and as I pointed out all the fibre I needed was on my side table, go figure! I know they are just following guidelines but honestly apart from a few nurses they can be pretty mean, one I met called Blessing turned out to be nothing of the kind. The lack of sleep is horrendous and I don't know what happens in the early hours at Guys but it is noisy as fuck outside in the courtyard with what can only be described as very loud machinery empty bins but like on and off for hours and no-one has actually ever given me an answer! I found myself on a ward with 3 other women who had bladder cancer which was a first as normally I am with other urology patients and I mainly meet men in clinic. One lady was lovely and although her cancer had spread she was really positive and in her 70s, we sat together and chatted a few times. Another poor lady next to me had been misdiagnosed by a previous hospital and was now given months to live, that was awful and I had been chatting to her daughter previously as she was asking the doctor about dairy (I won't even go into the crap the doctor came out with as most are just uneducated on nutrition which is sad). Needless to say I pulled my own cannula out of my wrist at 5am as the nurses kept refusing even though I was now only on oral painkillers! Oh and note to self and anyone reading this make sure they never put a cannula in your wrist, the hand is the lesser of two evils, lesson learnt. Once I got my discharge letter I was out of there, I even got the tube and train home and a friend picked me up from the station, to wait for my Dad would have been too painful. Hospitals are not a place of healing. There is nowhere like home for recovery.
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So I meant to write a blog about how awful my last operation in June was to remove a small tumour, but so much time has passed and the details are boring, so I will just give you a brief overview.
What was supposed to be routine day surgery ended up with me being in recovery for seven hours and spending three unplanned days in hospital, followed by a week at home with a catheter. Needless to say this is not something I ever want to repeat. However, it's in the past and I have moved on - I don’t like to dwell on negative times. Whilst on the ward I met a lovely girl, which made a real difference to my time there. Also one of my amazing friends Daniel rescued me from the awful hospital food by bringing fresh watermelon, smoothies, salad, lots of greens and healthy vegan snacks - a literal life save when you are too far from home for people to visit. So as you can see, it wasn't all bad. The good news is that when the histology report came back just one week later the tumour was benign. I should have been thrilled but after what I had just been through I felt I should never have had the surgery and I told them I am never having surgery again. My main reasons for this are: I had a really strong feeling that I didn’t need this operation, I also had a bad migraine attack two days prior (which didn’t help with the whole experience) and it was just after the London Bridge attack where Guys Hospital had been on lock down. My heart goes out to all those who suffered that night, because for all my complaining I am still alive. So I ignored my instinct, even though I'm getting good at really trusting it. My mistake, but I am only human. Sadly since this operation I haven’t felt as good as I should, or as I used to. My blood cancer symptoms have been worse, chronic fatigue being the worst thing I struggle with. I haven’t been able to exercise like I want to either, so like a vicious circle depression has hit me too. I went to therapy and talked it out which made me feel better, so after that I was able to dust myself off and start getting on with my life. However I have been going through paperwork from 2009 onwards and found things that have stirred up more emotions. So it seems quite appropriate that after over eight years (nearly nine), I have just emailed the hospital to confirm I want to start with drug therapy after Christmas rather than before. It has been one of the hardest decisions I have ever had to make, and without being dramatic it makes me cry just writing this (okay I am a little hormonal too). Until now I have been fortunate enough not take any drug therapy, apart from aspirin to thin the blood and strong antihistamine to control the burning and itching I experience at night. I am so grateful for all the amazing care I have received at Guys Hospital and the people I have met. I am also lucky to live near enough to London to be under the UK’s expert in the field of Myeloproliferative Neoplasms, Professor Claire Harrison. If I hadn’t switched hospitals four years ago I think I would have been on drug therapy before now, so for that I count my blessings too. After someone read my blog, I was contacted and invited by a pharmaceutical company to attend a patient advisory board meeting in Barcelona for Bladder Cancer Patients - a hard offer to turn down as I love Barcelona. I know my sister was nervous as it was travelling just two days before her wedding, but she understood it was something I had to do as opportunities like this don’t turn up often and I felt privileged to have be asked. In Barcelona I met some amazing patients from all over the world who had experienced much worse than me. It made me hopeful for the future and left me feeling inspired. I also learnt a lot and some of the stories I heard made me cry (of course!). I continue to appreciate all the support and love of my friends and family, especially my parents who are always there for me and my cats - I just wish Pinot and Phoebe could cook and clean sometimes... People often don’t know what to say. Sometimes they say the wrong thing, sometimes they say the right thing, sometimes they say nothing and they just listen. But for all the experiences shared, the tips and advice from everyone, I am forever grateful. However this is my journey and not a decision I have taken lightly, so forgive me if all I ask now is a shoulder to cry on sometimes or someone to listen without judgement. Meanwhile my follow up cystoscopy (yes a camera up the urethra) is scheduled next week and I am going to remain positive that it will be all clear in the bladder department so I can focus on getting my mojo back! Love & Light, xxx We all have many reasons why we love the Big Smoke, The City, good old London Town. I love the places to eat (so many amazing vegan choices), the iconic landmarks, the history, the cool places to hang out - but for me it's more personal. London for me is also home to the top hospitals, the experts. The best in the country flock to work here and I have been fortunate enough to be under the care of Guys Hospital Haematology Unit for the last four years. Yesterday was a busy day. I travelled up to London for another appointment, this time with Urology. I have long been unhappy with the care and communication at my local hospital so I took steps to change it. I am a real believer that you have to make some things happen. Being proactive in your life is a must and health is the most important thing we own. We were given our body as the only place to live, so we need to take care of it. The appointment started well and the young consultant was really understanding about the situation with my local hospital. My mood lifted and I even joked when he asked if I was allergic to anything. “Only St Peter's." I'm such a geek sometimes – I can just picture my soul sister Sam palm planting her face! The doctor offered to do my flexible cystoscopy the same day meaning I could cancel my other appointment next week. I had been waiting a long time for my follow up so this was good news. For anyone not familiar with what this means, it's basically a camera being inserted into the bladder via the urethra. It's not painful as they numb with local anaesthetic and at Guys they also prepare you with a one shot antibiotic to avoid possible infection (I am not a huge lover of antibiotics but I went with the flow as I have had slight infections previously). Then it's feet together, knees out to the side and in they go! This time the camera was on with the screen right in front of me - let's just say I've never seen my vagina from this viewpoint before on a screen and it did make me laugh to myself #porno. Unfortunately the result was not as I had hoped (especially given my surgery was only in December) and they discovered a very small section of tumours. But I have been here before and the consultant and nurse were so lovely that I felt totally at ease. It was decided they would book me in for a procedure under general, no rush, just better to remove it again. I couldn't resist but ask could it possibly have been overlooked in the speedy procedure the arrogant consultant at my local hospital performed towards the end of the day of procedures. They couldn't say, but did agree it was quite possible. I can't think otherwise how it would have grown back in just over 4 months, especially as it was just a small patch. I will never know but my gratitude for being under the care of Guys Hospital Urology is huge. The consultant was thoughtful enough to take me to the office where a lovely lady booked my surgery. Then I went onto the pre-op assessment reception, where I actually had all my tests done in one day, phew! There was a bit of waiting around, but I was so grateful to get this done in one trip. So back to Guys early June and I am just left debating about having the mitochondria (chemotherapy wash) this time, but as ever with mixed views. I have sworn to avoid chemotherapy and have opted not to go this route previously. Anyway, we'll see. A long day, but the bonus of being in London also means great vegan food. After leaving Guys I nipped to Borough Market to The Big V Burger Bar and had the most mouth watering, melt in the mouth vegan cheese burger experience ever! I had to attach a couple of photos to show you. Then home in time for a cup of red bush and some melon before driving off to massage a client. All in a days work! So the final straw came in the form of someone spiking my drink at a local bar in February 2015. One moment I am feeling unwell and getting my coat, the next moment I remember vaguely being on the floor with the bar manager talking to me, then drifting in and out of consciousness. Finally, I woke up in hospital with a friend by my side attached to a saline drip. Let's just say because we smelt of alcohol they believed I was blind drunk, crazy! I can handle my drink and I have a high tolerance which can be a blessing and a curse, but this night I had not had more than 3 drinks maximum, it was still early, and I have never passed out like that, oh except maybe once in London when many years ago in my early 20's my boyfriend believed I had been spiked in a club, however he took me home and I slept it off and that time I had drunk quite a bit so it was difficult to tell.
I was so disappointed to receive a letter from my GP who thought I might have been hitting the bottle, to find out the hospital just put it down to alcohol, I felt like I was some stupid little girl, not a grown woman of 40. Needless to say they didn't do any blood tests (oh that would be expensive) despite me having a rare blood cancer, I still think what the actual f*** to this day! Still the past is in the past, but I am putting this all down to give you the full story rather than to dwell! Now, to how I turned it around. How did I pick myself up? Well I read some great books and the one that really got me motivated again was The Slight Edge by Jeff Olson. I started to realise that if you do a little bit at a time using the compound effect over time you can create amazing results in all areas of life. So what did I want to do most, I wanted to start running again, running is my therapy and my meditation. It's cheap and effective too! So with some of my girlfriends just around the time of World Genes Day in March we created our team "Rare Runners" and decided to run the local Saturday morning 5k Bushy Park Run wearing some custom made vest tops and of course some denim hot pants (Jeans for Genes). We raised I believe about £600 for MPN Voice, my chosen charity. It was my 41st Birthday weekend and although I had hardly slept through nerves and my usual insomnia we fuelled up with coffee and bananas and off we went. I had something to prove to myself and although it was not a fast time I was happy enough with around 31 minutes. We even got a photo with "Nasty Nick" aka John Altman who was a Park Run regular (I since made sure I beat him as often as possible haha!). Lovely guy and he asked about the charity, and the charity were pretty pleased with the photo too! We went out that night and I drank prosecco and had an amazing time with no spiking! I have learnt if I do go out even with soft drinks to cover the top and I definitely never left a drink unattended. It was a great celebration and I felt I was getting back to being me again, finally! Love & Light, Louise xxx After everything, imagine my surprise and complete shock to find out after my operation that I was actually pregnant. I just assumed my body had been through so much that was why I hadn't had my period (sorry boys). However, after some nagging from friends I did multiple tests, some didn't work, but then one day I came home to one I had left on the side thinking it was negative or a faulty test to find it positive, I panicked, phoned a friend, did another one and then called her back, it too was positive, she came over later with a higher quality digital one, and we didn't have to wait long for another positive reading.. I remember being so shocked, surprised and totally confused, I wasn't sure how I should feel. I didn't think I could conceive let alone with all this going on! We soon said they must be "super swimmers" and then the worst bit, breaking it to the person I had been seeing.
There is never a good time when you know this is going to be a difficult conversation, an unplanned pregnancy wasn't on the radar, and to make matters worse he was moving abroad with work. I thought about not telling him, but how could I not, and what would I do, break the news later down the line via facetime or text? Picking the right moment was tough I can tell you. I remember lying in bed one morning after his "work leaving event" and crying and saying that I was so sorry.. he soon guessed and was gob smacked but a true gent and just hugged me. We went for a breakfast and talked. He seemed to be taking it all in his stride, suggesting logical things and saying about how it could work etc. He cancelled a night out to spend time with me and everything seemed well. However, the next morning whilst I was getting my biopsy results he tried to call. I had a bad feeling. The biopsy results were as I suspected and I was relieved and the consultant explained how they would do ultra sounds given my condition. He hadn't slept well thinking about it and he wanted to talk. I will never forget going for a walk into Oxshott Woods (I still haven't been back there to this day) and how he wasn't happy, this is not what or how he planned and although I respected his honesty, I was hurt and felt rejected. My sister had a plan for me to get an early scan to check all was ok before he left that way at least we knew what we were dealing with. I had mixed emotions seeing a very small foetus on the screen and being told their was a strong heart beat and I was about 7 weeks and 5 days pregnant. I was given a copy of the scan to take home. I still have it, it's the one thing I still can't bear to destroy. In fact writing this last night down on paper literally had me in tears and I couldn't stop crying. Needless to say when he came over that night after work I saw a different side to him, this kind, caring and compassionate man I knew, or I thought I knew, after all let's be fair we hardly knew each other really. He wanted me to get an abortion something I couldn't face. I kept telling him it was early days and anything could happen. I really didn't want to tempt fate. I felt like this was a miracle, a gift from God, and I could take another life. Plus at my age this was maybe the only chance I had if I wanted children, something I was still unsure of, although I always thought if I met the right person who was hands on! He left for Singapore. There was no contact for a while and that suited me, I could pretend that none of that happened and I just focused on me and the baby growing inside me. It's amazing the connection you gain so quickly to a being growing and living inside you. I felt an instant bond and love for a small "prawn" as someone described it. When he did get in contact he had thought about it, talked to someone and was coming around to the idea of being a father, he booked flights home for the 12 week scan. New Years Eve was my first midwife appointment at St Thomas' Hospital in London as I had decided given recent experiences I was no way having my baby at St Peters and I needed to be under special care given my blood condition. I was already having to take extra precautions by injecting into my stomach blood thinners and I can tell you that after a while that can get painful and you run out of sides to do that aren't bruised or sore! However, I was not going to complain - anything to make sure my baby was safe. I went for a walk with my friend Maria later that day, I had a spot of dark blood, I was a little worried but read up it can be quite normal so went home and chilled out with a DVD and probably pizza! Funny when I look back I felt like I had a hangover on New Years Day yet I hadn't touched a drop and had an early night. I guess the signs were there! On the 6th January I was at home with my sister and a good friend, both you had experienced childbirth and miscarriage when it started, the universe had given me the best support that day and so off to St Peters (as closer) my sister and I went. I have never prayed so hard or crossed my legs so tightly. I didn't want to lose this baby! We spent hours in A&E and I cried so much, I prayed so hard, I emailed my Auntie in the USA to pray for me, a nurse came to visit me and prayed for me too. It was all too much. I stayed in overnight and that night on the same ward I had been just two months earlier I miscarried that baby. There is no dignity is wearing an adult size nappy and such was my distress that a fellow patient came and sat on my bed and held my hand, what an angel she was, I will never forget that. I passed a small gestational sack and I knew then that was it, I was sure it was smaller than it should be at what was now 11 weeks. The next morning a scan confirmed what I had dreaded, even though secretly I hoped for some miracle that they were wrong or there was two and one survived. It wasn't to be. I can't remember the text I sent to him that morning but he called straight away and honestly sounded really upset too. He promised to keep to his commitment and would be back the following week to give me a hug. In some ways I am glad it happened before the scan as I am sure that would have been even more devastating. He arrived with flowers, a card, a book and we went for lunch. Things had changed. Everything was lost. I saw him again once before he left. I remember crying and telling him how he would be an amazing husband and father one day, he said he couldn't see it. However, I am happy for him as he is a father to a daughter and engaged to be married. This was not meant to be for us and I thought until I wrote this that I was over the loss.. however, maybe you never get over the loss of an unborn child, whether it was a "prawn" or not. I have a star tattoo on my right wrist if you have ever seen it and wondered, as that's Grace, my baby girl, a star that never was for this life, but I know she lives on elsewhere and I have been comforted in the knowledge she is looked after by my family "upstairs". I believe everything happens for a reason however, that can be really tough to understand for many, and there are people far worse off than me, I know that, however, you can only really understand yourself what is happening to you, and one day, just one day you will make sense of it all. It was not meant to be although I was given a small glimpse of what it might have been like, and I am so blessed to be mad Auntie Lou Lou to two beautiful girls and I can't wait to be Godmother and watch them grow. Until we meet again my beautiful girl.... Love & Light xxx So one day in the Summer of 2014 whilst working at a sports event massaging swimmers I noticed blood in my urine, I was shocked but thought maybe it was down to my daily aspirin, or as I read up on the internet (I know you should never google) could be due to running too. Anyway, I wasn't that worried but it was quite consistent so I thought I will just call the doctors anyway, lucky for me as it was in the midst of Summer they could give me an appointment within a couple of days.
What followed next was an awful appointment with a rather frustrated young doctor, who I must say due to his lack of eye contact and concern had me back in the waiting room almost in tears talking to another patient waiting. A urine test showed some blood but no infection. I will be honest here and thought a certain young man may have given me an STI and I remember cursing on the phone to a friend (sorry about that). Anyway a call to my haematology clinic nurse reassured me that it was highly unlikely my aspirin and to continue with further investigations. Oh and turns out the young doctor was very diligent and the new computer system had been stressing him out all day, what was it I said about learning not to judge others! (Note to self) Fast forward and after being referred to a Urologist who didn't give me much faith as he sat there ticking boxes on sample sheets to be taken to the Hospital for further tests and chatting about probably nothing and just give you a good MOT anyway. I will never forget I was wearing my running vest for Anthony Nolan and he had no idea who the charity was, another reason I was running for them, people needed to be made aware of their great work and bone marrow donation (I digress, as that's another story!). Fast forward some more, urine tests, blood tests, CT scan, all clear and negative - hurray no need for the cystoscopy which I had not fancied having, I mean cameras in orifices have never been my bag, and really up the urethra, how? Eek, the very thought made me cross my legs (as I am doing now again as I type this!). Cutting another long story short I was advised to go ahead with the procedure and so having built a great relationship with the secretary in Urology I agreed. So the day of the procedure comes, I bowl in all positive and maybe a little too confident, reading Stephen Covey's the 7 habits of highly effective people! I don't believe I have picked up that book since, if you have ever read it you will know it's pretty heavy going anyway but after this I just guess I needed to read something else! All was going well they showed me on the screen my bladder, all looked good and healthy, phew, then just as they turned a corner a strange carpet like structure, so I ask are they polyps? The response was lets get you dressed and talk about it. Oh that didn't sound good I thought. Once wiped dry and seated (still in my hospital gown) I am delivered the shocking news that it was in fact cancer! Really? What the actual fuck (ok I didn't say that) I can't remember my exact words but I was gob smacked, remembering that when I was diagnosed with PV it was a shock but not called a cancer back then and we all know the "C" word is scary! So I cried, I didn't mean to, the senior nurse was lovely, Vicky, and she still is, she said they were as shocked as me. The consultant said he would remove it and not to worry, I asked him to promise.. not sure he could but he reassured me whatever his words were, funny how you forget some things (well I do anyway a lot with brain fog associated with PV and I try and blame old age too) when in shock. I think when the senior nurse gave me her business card I thought this is serious, but I tried to remain positive. I got in my car (alone) and dialled a number. My parents are my rock, they don't always understand or say the right thing, but they are my parents, they care for me and I for them. They brought me into this world and looked after me and sadly I have to say even at 42 years old I am still their child and they still look after me! (cue me crying as I type this on Mother's Day having seen my parents earlier before they jet off to the sunshine for 3 weeks missing my birthday again - that's become an in joke and almost a given, I am more shocked if they are here for it!). Then I needed to see my sister, my baby sister (ok by 22 months) who is also my best friend. She lives near the hospital to easy to pop in, plus as a busy mum she's not the easiest to reach by phone, and I felt this needed to be delivered in person. As always my sister is great and gives the best hugs and seeing my little niece Emily made everything all the more bearable. That night in October was my friend Maria's birthday, I called her warned her (in case of any sudden drunken crying) and I called another friend or two. Anyway, that night I had a great night out and got very drunk, as a knee jerk reaction, drown it all out in copious amounts of booze! Oops! I don't recommend it but you know what, you do what you need to do at that moment in time to cope. So on the 5th November I had surgery to remove the tumours. It wasn't the best experience I have had, and I could write a whole blog but I don't want to just moan about St Peters again! I stayed in for 2 nights. I was blessed with some lovely visitors and will never forget my raw chocolate gift from my oldest friend Kellie, yummy! I just wish they had told me how painful it would be to pass urine after that awful catheter was taken out.. ouch! Think burning glass. Never stopped mid flow before but by goodness I had never felt pain like it, and I hope I never feel pain like it again! Short of nearly passing out on the floor, I decided I would get to my bed, scream in agony, press the buzzer and hope for the best, my distress must have been so bad that other patients buzzed for me and finally someone came and I do remember screaming give me morphine now! We almost had it down to a fine art when I decided a commode would be a better option. Weirdly my experience once back at home was much better and paracetamol helped and I never touched the tramadol they gave me, still have it - maybe as a momentum! The body is an amazing thing, I've studied Anatomy and Physiology so I've maybe a little more knowledge than some although I can't remember everything I learnt (brain fog) but I also know how complex it is can mean many things can go wrong. However, it never ceases me how quickly we can heal too. I felt very fortunate to be surrounded by loving friends and family and a young man who will remain anonymous to support me through a difficult stage of my life. Life is a journey, not a destination and it is not a smooth ride always, but what doesn't kill us does make us stronger. I often use the quote "I was given this life because I am strong enough to lead it" - I often tell others going through hard times the same. I started to appreciate living in the moment more and I guess old habits had slipped and I was not looking after myself as well as I could or should, so I made a note to get fitter and healthier again, but fate or God had other plans.... (but I will save that for a new blog). Love & Light, Louise xxx I remember having migraines firstly as a child, then into my teenage years, and I guess they plagued me throughout my young life but infrequently and I was told both my father and his mother suffered so there it was, a hereditary condition, and there is was left being told they grew out of them and me left wondering how old I had to be to be migraine free. Then at 30 I had an awful migraine that left my whole left side feeling slightly numb. I remember vividly calling my GP and being told to stop taking the contraceptive pill immediately, so I did.
For the next few years I was constantly getting migraines, and feeling unwell, I almost couldn't put my finger on it but I knew something wasn't right. The "hangover" from the migraines would last until I got the next attack, my life felt so limited yet I knew there were people worse off than me. I wasn't super dramatic and start thinking about brain tumours or anything serious (although if I am honest it did cross my mind briefly). I just remember feeling trapped in a relationship with someone who was controlling, trapped in my useless body, I mean who gets a migraine during a yoga class and have to leave, oh that would be me! I got them at the top of the Munro Mountains in Scotland, Christmas Day, in the morning, in the evening, half way through any day of any week, you name it, they knew no mercy, any time, any place just not as welcome as a "Martini" that's for sure! My life changed, maybe slowly at first but soon I lived in constant fear of having an attack, having up to 4 or more attacks a week and after trying everything I researched and tried everything from drugs (beta blockers, anti-depressants etc), most holistic therapies out there and cutting out so many food groups I was literally at a complete loss and often left frustrated, in tears, angry and pretty damn depressed, oh and I am sure my GP thought I was a hypochondriac too after countless visits to him. Even neurologists and specialists at a migraine clinics couldn't fix me! I will never forget my GP keep asking me if I smoked and drank a lot, as if, and if I had been to Peru, what the fuck had that got to do with anything.. if only I had pushed harder or he had explained. I briefly remember him saying he would write to a haematologist but I can't remember now if he actually did, or find it in my records I later asked for. I am a do-er always have been, I wanted to find out why I felt like this and what was this a symptom of. Finally, after moving areas a couple of times in 2009 I was at a new doctors surgery when a young Indian doctor (his name escapes me) sent me for more blood tests, oh did I mention that I had lots before but no-one noticed a thing or as my original GP said what's normal for one person is not always the same for another when there was some elevation in blood work, I bought into that as we are all unique and he was the doctor not me! Anyway I digress, the results came back and the GP looked at me and said this looks like "Polycythemia".. to which my response was what is that and can you spell it for me, so he wrote it down on a piece of paper and off I went back to work to sit and googled it, what did we do before google and the internet? I rang him and he agreed to send for my full medical history and request a haematology appointment. Well that day changed my life forever! I am eternally grateful to that young GP and I wanted to go back and thank him personally but he had moved on by the time I did. So whoever you are and where ever you are, THANK YOU! So next was a visit to the haematologist at Ashford Hospital in Surrey, put on 75mg of aspirin followed by a serious of blood tests, chest x-rays, ultrasounds, a bone marrow biopsy and my first and not very pleasurable but very memorable "venesection" or "phlebotomy". 3 nurses, 4 attempts, a panic attack, and a lot of pain later, I still only managed to part with 250ml of my thick sticky blood! I stumbled out of St Peters Hospital with my Mum feeling like I had been hit by a car, actually make that a truck (ok I am getting dramatic now). I don't have a fear of needles and good job, because I was like a pin cushion that day and have felt that way ever since. I am sparing all the details for anyone who doesn't like needles or blood and to ensure you haven't nodded off by now! My bruising on my arm left me looking like my boyfriend beat me so I kept it hidden under a cardigan even if it was warm out, it was May after all. I tested positive for JAK2 (97% of patients do) which is a mutation (or change) in a protein called JAK2, a protein that is part of the mechanism which regulates blood cell production in our bodies. So basically my body produces too many red blood cells (carry oxygen around our body, however before you think that could be a good thing, they are not of good quality, after all this is a disease) and I also had a high platelet count (which is the bloods ability to clot). So I am technically a mutant. It is not hereditary and still the causes are quite unknown, although suggestions of viral infections or radiation damage and more recently petrochemicals, which is why I now live my life as toxic free as humanly possible! So from then onwards, it was weekly then fortnightly trips to the hospital to be bled. My body won't forget the first time and as much as now it is second nature I have still had my near passing out moments. I am now lucky enough to be under the top consultant in the UK at Guys Hospital in London Bridge, which by the way is classed now as a MPN, Myeloproliferative Neoplasm. The charity set up by the amazing Professor Claire Harrison can be found here http://www.mpnvoice.org.uk/ and now I always urge new patients not to google but to go straight here! I have also recommended people to get a second opinion from Claire, as she really did change my life for the better when things were not working out with my local consultant (I won't bad mouth him on the internet mind you!). I do still feel blessed and cursed by having a rare and chronic blood cancer, but I am happy to say that treatment is less frequent and apart from a few side effects and symptoms including fatigue, pruritis, sleep problems, blurred vision and some times still some migraines I feel like we have this under control and it is manageable and so far I have managed to avoid drug therapy and I hope to long continue this in the many years to come. What having a chronic illness has taught me is never judge, people often say I look well or I don't look ill, a compliment but hard when you are feeling like shit and no one understands. It's taught me that life is short (yes I bought a small sports car and went travelling for 3 months) and your health is your wealth. I was vegetarian before diagnosis and went pescetarian under duress from worried family and partner, however, as it turned out diet played no part in my symptoms per se. I went back to being fully vegetarian in the Summer of 2015 and eventually made the best decision ever to go vegan in October 2015. More about that in another blog though! I also run and do yoga and try to get to the gym when I can too. I am now a member of Vegan Runners and although I am not the fastest runner I enjoy the fresh air and moving my body and have run about 7 races since I started running back in 2011. I am by far from perfect but I am always learning, always pushing boundaries, always adjusting my lifestyle as best I can, always giving myself a hard time, having mini meltdowns, picking myself back up and continuing to try and inspire others. I am sure you will get a better idea when I write more regularly, although I promise to try and entertain you rather than bore you! With love & light, Louise xxx |
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Louise Simpson Archives
February 2020
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