EMergise-Me!!

Most people know that I have tried to keep my mind busy doing various things whilst I have been off on sick leave. One of the things I challenged myself to do was to become qualified as a personal trainer. I have always wanted to do this, but not had the time alongside work commitments.

Well after some hard work, and tough exams  I am qualified!! Please take a look (and maybe like or share 😉 ) at my facebook page:

https://www.facebook.com/emergise.me/

I know I talk about it a lot….. but fitness is a huge passion of mine. It has been crucial to getting me through treatment – physically and (more importantly) mentally. It has kept my body strong and ready to fight off the next infection or to cope with the next round of poison drugs. It has given me a way to help reduce my anxiety/stress in a healthy way!

I love how exercise and fitness make me feel alive …. stronger …. fitter … healthier … happier ….and more confident. And now I can share this with people not only in classes, but 1-2-1, where I can focus more on the individual and help all the magic happen!! Ha ha!! I really want people to start to understand why all the doctors bang on about doing exercise…. what really is so great about it??? NOT just to get that short term fix of losing a stone before I go on holiday, but about making the lifestyle changes that can be sustained long term and really make the difference to your health and wellbeing.

I want everyone to fall in love with exercise and its benefits!!

Next steps – to do my level 4 certificate in Cancer Rehabilitation so I can learn more about other types of cancer and use the experience of my journey to help others!

the moment article

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What do I wear to work tomorrow???

So I have another fear to face tomorrow….. returning to work…..

This shouldn’t be scary but it kind of is! I left work in August 2015 when it became clear the low dose chemotherapy i was having wasn’t working and I could no longer mentally cope with work and illness. So it has been more than 18 months I have been off, and although physically I’m ready, mentally I’m still not sure!!

So many things going through my mind right now…….

  • How do I answer questions from people? i.e. “Are you all better now?” “How are you?” – its never a simple answer – one day i’m good, then next not so good…. most days I feel like a nap by about 3/4pm!
  • How do I deal with all the people? – Last week proved to me that I do find it draining being around people and this might be worse in a work environment
  • What do I say to the people I have lost contact with over the last year? – some of these people used to be my good mates, but through losing work we have lost contact. Mostly because I found it too hard to try and keep in contact with everyone at work, when it was somewhere that I wanted to be.
  • Will my brain work???? – Will I be able to focus for more than half an hour on something?
  • Will I remember all the new peoples names???
  • What do I blooming wear?!?!?!? – The dress code has changed to smart/casual rather than smart. Just gone through my wardrobe and I obviously don’t own anything that suits this criteria!! One extreme to the other…. pretty sure ripped jeans and doc martins are a bit too far to the casual side!!
  • The commute…… errghh!!
  • How much will people expect of me? – Will it be difficult to manage peoples expectations?
  • Do I even want to go back?!?!

Luckily my work have been amazing. With the support of my manager, Working Towards Wellbeing, Anthony Nolan and occupational health we have planned a really slow phased return. Previously I have done a standard 6 week return, but this just isn’t appropriate this time around.

Firstly I don’t want to go back full time, not in 2017 anyway, so we are doing a build up to 3 days a week. Tomorrow I am just going in for a few hours. Collecting my laptop, meeting people, finding out a bit more about the job I’m going to be doing. Initially I will be doing some internal work to get me back into the swing of it again. Then I will do a second day of a few hours working from home. From there we will build it up, mixing up office time and working from home. Then it will be decision time on whether I move back to London – but I think that decision will be a while in the future yet! – I have to say that nothing is really driving me to move back at the moment (other than swing dancing of course!!)

Plan for today – sort out my outfit….. pack my stuff… and chill out with the dog and grey’s anatomy binge!! Settle myself ready for tomorrow!! Wish me luck!!

 

 

 

 

 

Facing up to fears

This is a really tricky thing for me to write about as I feel at risk of upsetting people and I really don’t want to do that, however I thought it was something really important to share with others so they are not alone with these issues.

So I have just come back from a trip to South Africa for one of my best friends wedding – Firstly I want to say this is truly amazing I was able to make it full stop and its all thanks to my second transplant – Which are now available on the NHS!!! Woop!! Secondly I have decided this will be the topic for my letter to my donor – without their help I would have not been able to make it. Thirdly – It was an amazing trip and I feel so lucky to be able to be there for my best friends wedding day!

However, the trip didn’t come without its challenges for me……

Firstly I had never flown long haul – ever! My longest flight before this was 3.5 hours to Greece (this cancer malarkey somewhat puts a downer on my traveling- either doctors won’t let you, you don’t feel up to it, or it feels too damn scary to go that far). I had never even got out of my seat on a plane, let alone gone to use the toilet and I’m not sure this is something that could ever be avoided on a 12 hour flight.

The idea of flying long haul made me really really panicky. I was scared I would have a panic attack on the plane and there would be no way for me to deal with it. A few years ago I used to frequently get panic attacks, mostly on public transport or in stressful situations. My normal coping mechanism was to get out of the situation and walk. Basically go outside and walk. My main fear with the panic attacks stemmed from nausea and I would just want to try and escape from it. However, you can’t just get off a plane when you feel a bit panicky can you?!?!?!?

Secondly, I hadn’t yet been away for more than a few days after this second transplant. Let alone for 8 days half way across the world!! What if I got ill? My sinuses were already playing up, just the air conditioning on the flight could be enough to play havoc with that!

Thirdly – and it turns out the hardest thing to tackle at a wedding – PEOPLE!!

Now I think you will surprised when I tell you I actually suffer with an element of social anxiety. I actually think my over confidence is part of that. This last few years I have struggled with bigger organised events, or even just smaller meet ups. I don’t do anywhere near as much socialising as I used to, and I find I have to push myself to do it. It tends to be worse when its more hyped up events with more pressure to have a good time or get dressed up, i.e. new years eve, birthdays, weddings(!). It feels much easier to spend the evening on the couch, in your pj’s, watching Grey’s Anatomy with the dog.

Most people spend 8 hours a day in an office/school/environment with lots of other people around them. Lots of noise, conversations, etc. I don’t have this. At the moment I spend the majority of the day on my own. My dad/brother might be around, but usually in different rooms. I can choose what I do, when I go out and when I see people.

So I’m going from quiet days to 8 full days with LOTS of people. Its hard to describe quite how draining this is. You really don’t appreciate how draining this is until you’ve experienced it. So this is the point where I would like to apologise for sometimes disappearing to my room by 8/9pm, but by that point my head could no longer cope with keeping up with conversations. I was exhausted. I just want others in similar situations to understand that this is a totally normal thing to experience, and it feels really stupid to say it but spending more than a day with people is tiring!!

I am not ashamed to say that diazepam got me through the majority of my days on this trip! But I wouldn’t have missed it for the world.

Ignoring all the challenges of the trip I had an absolutely fantastic time. Got to spend time with the friends I love. Meet fab new people. Explore an amazing country. And most importantly be part of my best friends wedding. Much love to the happy couple xxx

 

 

What do you say tothe person that saved your life?!?

Thank you doesn’t seem quite good enough!!

 

I received this letter in the post a few days ago.  It was stamped from King’s college hospital so I presumed it was just a boring appointment letter or something.  Was so shocked to see a letter from my wonderful donor!! Now I need to decide what to write back? How do I put into words how grateful I am?!? Thoughts welcome!!

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Sorry it’s the wrong way up, can’t work it out on my phobe

Whats going on in my world

Again its been a while since I have blogged and quite a lot has happened!! I’m going to do two separate blog posts…. one about me…. and one about politics

Kings Appointment – All going well 🙂

Yesterday I went to Kings to get checked out. My bloods were great; wbc 5.2, hb 127, platelets 122. They are really pleased with how I’m getting on. My fatigue seems to be getting slowly better and other ailments are reducing. I’m beginning to feel a tired version of normal!!

We discussed the idea of having my one year bone marrow biopsy just to check if everything is ok. I think I have been almost persuaded to have it; my argument was y bloods are great so there’s no need, their argument was that the biopsy can detect any problems a lot earlier than blood tests so we would have more chance t0 nip any problems in the bud. We have agreed to wait and see if there has been any improvement on my chimerism (% donor) if no improvement then I will have the biopsy just to check everything is ok (JOY!!)

We also discussed iron collation. Currently my iron (ferratin) levels are over 3,000 which is over 10 times the amount it should be. Once my Haemoglobin levels have improved a little more then we will start doing venesections once a month to draw off a pint of blood and lower the levels.

Dodgy Sinuses

I went to see an ENT specialist at Guys hospital the other week about my sinuses. I still have problems with post nasal drip (a.k.a lots of mucus dripping from my sinuses into my mouth), a lot of mucus in general and fluffy hearing. Unfortunately he says there doesn’t seem to be a great deal wrong with the anatomy of my nose, the left side could possibly benefit from being operated on to widen the canal but it might do more harm than good. The main part of my problem is due to inflammation which is why it gets worse when I am run down or unwell. The only real treatment that can be offered is similar to that for Asthma which is steroid sprays and a regular wash out with nasal saline sprays/ neti pots.

Fitter and Stronger

Every week I seem to be getting fitter and stronger. I am back lifting weights, running and teaching classes again and boy does it feel good!! I’m starting to feel alive! Granted after a class I might need to rest up after, but I enjoy it so much its definitely worth it! I can also see that my muscles are returning and I am getting stronger. Heck, I even managed to do a handstand the other day!!

Brain Power

As well as all the fitness I have also been testing my brain with my PT/Yoga qualifications. It was my theory papers the other week for my level 3 anatomy and physiology and nutrition exams……. Amazingly I passed first time!! I still have some brain power left in me. I do already feel like that the knowledge has already escaped my brain though, need to work on retaining information for longer than a week!! Any tips welcome!

Really enjoying using my brain again though. Its giving me the confidence to feel like I am ready to take on work again. Still waiting for all the HR stuff to be sorted out, but hopefully should be looking at getting back to work by March, all being well!

 

Feeling Thankful!

Today marks one year from receiving my new stem cells. The one year anniversary of my “rebirth”, my new life, new beginnings, my third chance at life!

Here I would like to say thank you to my two stem cell donors. Without both of them I certainly would not be here today. I would also like to say thank you to all of those who have joined the register as you could have been a match for me, but more importantly you could still be a match for someone else.

I am also so grateful and deem myself so lucky to have had the funds approved for this second transplant. At the time, I didn’t realise quite how lucky I was. It is only now where I am having to watch people die and suffer whist waiting for funds to be approved (if they get approved at all) that I do realise.

This time last year I was in a hospital bed, feeling lousy, but not yet the full effects of my chemo. I was weak from the past 4 months of hospital stays with various infections and previous rounds of chemo but my spirits were relatively high in the hope that this would get rid of the cancer for good.

As I write this (3rd Jan) I have just been planning a step aerobics class to teach tonight. Who would think that one year on I would be back teaching aerobics again? I certainly didn’t! As this was the 3rd time my MDS had relapsed and after a rocky recovery period I thought I would be a participant for the rest of my life especially given that at some points in my recovery I could barely walk a mile. But yesterday I taught my first freestyle aerobics class and tonight I will teach my 5th step class!

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Fatigue is still an issue but can be worked around – teaching an aerobics class is one hour out of my day so it’s easy to nap around it! The next step is now in progress with setting up a plan for returning to my main occupation in loyalty analytics. This is a huge step in getting me back to normality, however I have already decided that this will only be part time. After going through so much in the last 1.5 years (well 12 years if you consider the whole journey!!) I have realised that I want to ensure I make time for me and my health and working part time is part of this.

So back to work in the next few months – fantastic – BUT the main take away from this is that I’m well enough to work! I’m not stuck in a hospital bed. I’ve managed to fight off some mini infections without having IV antibiotics being pumped into me. I’m physically strong enough to teach an aerobics/weights class. I’m mentally strong enough to be considering taking on new challenges of going back to work. Ignoring work I’ve managed to travel abroad . Heck – I’m doing my own washing, driving myself around, going shopping, cooking my own dinner, reading books again, crafting again, etc etc! Anyone that has been through similar illnesses will know what big wins these are 🙂

However all of this could not have been achieved without the generosity of my two German donors. (And yes German – because there aren’t enough of you Brits on the register! If this isn’t a good enough reason to sign up then I don’t know what is!!)

Thank you!!!

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 I had a group of friends from work come in to support me (much frowned on by the nurses but we managed to convince them to let them all in!) and we had a good giggle and celebration as my new stem cells entered my blood stream!

 

 

 

 

Time for reflection

Depression……. This is something I haven’t spoken much about in my blog but it is something that effects me. Not every day,  not as much as some people and perhaps not in a way that is visible to others but it still does.

A few people know, but I have been on antidepressants since my previous relapse in 2013. That hit me hard physically and the shock of being ill so quickly meant I didn’t have time to mentally prepare and suffered hard mentally too. With all the things going on I never quite got myself to the point of coming off the antidepressants, and to be honest I’m not sure I’m ready to yet either.

With me I tend to go into hibernation mode. I want to stay where I feel safe. I want to laze around and avoid all the things I should be doing and kind of hide away. Despite being someone that loves being around people I find it takes a lot of effort to organise seeing people (I don’t like making commitments – I find it easy to drop into a weekly catch up knowing I don’t have to go if I don’t want to, but I’m terrible at organising anything outside of this), going to special events, and parties etc. Like even today, new years eve, when I know I’m going to a small gathering of friends I am still deciding whether I feel up to going. Its that feeling of not wanting to go and having to put on the happy party face. I don’t want to sit here and cry, but I don’t feel like being happy and giggly so don’t want to go and ruin the party for others! Its not even that I want to mope, I kind of just feel more comfortable in my own company.

So as it is indeed New Years Eve I am sitting here trying to think of what I have achieved over the last year. What battles I have won and what positive things have happened. Here is when I struggle to focus on what I have achieved, not what I could have achieved if I hadn’t been ill. I also have to ensure I’m keeping the focus on me and my achievements, not whats going on around me and with other people. It is hard though when you see around you friends getting promotions, married, kids, new careers, new houses, etc etc. I have to just keep reminding myself that I beat cancer….. AGAIN!

But there are those what ifs…. what if I didn’t have cancer? What if I hadn’t got ill when I was 17? What would my life be like now? BUT I can’t think like that!!

So what are my positives/achievements for this year?

  • Making it through chemo with a smile on my face (even though it was a slightly smaller smile some days)
  • Keeping active through out treatment
  • Fantastic trip to Cromer with HiP ladies
  • Travelling to Ireland and Vienna
  • Getting spiritual! – Getting into my yoga and embracing partner work…. and hugs!!
  • Telling my story for Anthony Nolan at parliament to help fight for second transplants to be funded. And by doing so winning the patient ambassador award.
  • Partcipating in the world mds day flash mob (and succeeding in learning the routine on the train there!!)
  • NOT going back to work too soon
  • Going vegetarian – one of the best things for my guts and hopefully saved a few animals in the process
  • Craft –
    1. Completing (well its not complete but its usable) my square blanket and teaching myself to crochet properly
    2. Completing two wearable crochet tops
  • Fitness
    1. Running the park run on new years day – 30:58
    2. Passing my level 2 gym instructor and freestyle step aerobics assessments
    3. Starting my PT and yoga teacher qualification
    4. Getting back into teaching Body Pump and choreographing my own freestyle step classes

And really these are all the bigger things….. what I haven’t listed are things like having the energy/motivation to cook my own dinner (or for the family) most days, doing my own washing, spending the majority of the day off the sofa, etc etc. The little things are sometimes the hardest!!

I recommend anyone feeling a bit down spends a bit of time to sit back and look at what they have done this year. NOT what you could/should have done, but what you HAVE achieved.

“The only time you should look back is to see how far you have come”

How far I have come

It seems crazy to think that this time last year I was packing my things (well I should have been) and preparing for my admission to kings hospital for my second bone marrow transplant. I was weak and recovering from all my previous infections but trying to make the most of the time at home before hitting the chemo.

Now I’m almost a year post transplant and most of the time I am feeling great. Ok things aren’t 100%. but they are a damn sight better than I thought they would be at this point! (if I was here at all!) Physically my main complaints are fatigue, skin gvhd and a few gut issues but most of the time these can be controlled by a careful balancing act of rest and diet. I am starting an activity/food diary currently to try and work out any trigger points for physical changes.

I’m starting to get back to a new level of normality. I’m able to pace myself well enough so I can do my gym classes, I’ve even been back teaching some body pump and freestyle step classes! I’ve even been training my brain by taking on a PT course and a yoga course! These are things I have wanted to do for a while and have finally decided that I feel ready to take them on. It is also proving to be a great test of my concentration skills. I have been finding that whilst studying I really struggle to concentrate for more than half an hour at a time, and even then I’m re reading sentences. I have slowly been getting better though and its been great to have this as an exercise before going back to work.

So what about returning to work? I have been incredibly lucky to have a great family support throughout my illness so financially I haven’t had to worry too much, but it would always be nice to have a bit more pocket money to play with! It has now been a 1.5 years I have been off work….. 1.5 years…. I will be honest and say I am a little bit daunted by the idea of going back for many reasons (will do a separate post) but it feels like time to start considering it.I have put the wheels in motion and should be discussing role options with wok in the new year, will update as and when I know!!

So its all onwards and upwards! Lets see what the new year holds!!

Any new years resolutions?

Also – how should I party on the 7th January to celebrate my one year bone marrow anniversary??

Here are some photos of me doing some of the crazy things over the last month:

 

The fight goes on…

.. for a second chance at life for all transplant patients.

Yesterday I was invited to attend a meeting at parliament to discuss the decision to not routinely fund second transplants. The day went of to  a stressful start with me realising whilst on the train to London that I had thought the meeting was at 4pm, where as in actual fact it was at 3pm! Cue panic! I phoned Anthony Nolan to apologise for my lack of brain (can I still blame chemo brain?) saying I would be with them as soon as I could.

Now I had to work out the most efficient method of getting to westminister. Previously I had allowed 1.5hrs. Enough time to get a hot drink, have a wee, take a leisurely stroll over to westminster and be prepared for a potential long queue (up to 40minutes) to get through security,. Now I had 35 minutes, assuming my train arrived on time!! Gah!!

Amazingly my train arrived 2 minutes early, I ran whatever parts of the route I could, AND there was only 3 people in front for security. How lucky!!

The meeting was a  bit daunting. First time I have been to anything as official/formal as this. Around 20 people in the room, a couple of MPs but mostly clinicians or charity represenatives (however no one from NHS England turned up who we needed to talk to most!). I was called up first to say my 2 minute patient story. Here is a shortened, and more concise version of what I said:

‘ I have been fighting blood cancer for 12 years, and I have been fighting it hard. I have taken every opportunity given to me to treat it and live my life to the fullest. When my MDS relapsed and showed signs of progression to AML in July 2015 I was shocked to find out that the choice to fight was no longer in my hands. I had to ask for permission to fight. Whilst waiting for approval from the IFR I got sicker and sicker, I spent roughly 3 months in hospital on continuous IV antibiotics as my immune system weakened and the AML progressed. In the end my consultants made the decision that we needed to go ahead with chemotherapy regardless of the decision on the second transplant funding. This was a risky choice, as although the chemo would kill the cancer cells, it might also kill too much of my normal bone marrow for me to stand a chance of recovery. However, if we left the AML to progress further then the transplant might not stand a chance of working full stop.

I was lucky and I got given a second chance. I was deemed to “demonstrate exceptionality” and to be a “cohort that would benefit due to long term survival”. BUT I knew of others that weren’t as lucky as I and weren’t deemed exceptional. What gave me the right to live but not them?’ (here I did give more information on their story, but I won’t do so in my blog without their permission!)

The room was very much on our side. The MP’s  were asking lots of questions to all the room so they could find out as much information as possible to back up our case. They will then hopefully get a meeting with NHS England in the next few weeks to discuss it further.

I was horrified with how money driven all of this is….. At the end  of the day a second transplant isn’t to try and buy a patient 1/2 years…… its in the hope they will get to live till they are old and grey and have a normal life! How can you put a price on that?!?!?

 

 

 

World MDS Day

It seems to take me ages these days to sit down and think about writing me blog….. I can only think that is a good thing as it usually means there is nothing nasty going on in my health life, and everything else just feels a bit ordinary!!

Tuesday 25th October was World MDS Day. We had planned a flash mob in London, and in a few other locations in Europe to help raise awareness. We were meeting at 11 to rehearse and then deliver at 1…….

Now stupid me totally missed the memo containing the choreography, until 11:30pm the night before!! So ended up attempting to cram it all into my head whilst on a jam packed train to london. Worse…. I dragged my mum along and didn’t tell her we could have learnt days before!

Despite my last minute attempt to learn I still opted to stand near the front of the group, made quite a few mistakes, but who cares!! We did what we wanted to do and had a really good time. It was great to meet fellow supporters and just a fun day out!

Please watch and share the video

 

Health wise – The antibiotics seem to of done the job and I appear to be sinusitis free!!! Woop!! Bloods are still doing well…. Keep your fingers crossed as things are looking good!!

Busy week up ahead with talks for Anthony Nolan and a meeting at the house of parliament about second transplants!! What to wear?!?!?!