Money makes the world go around

Finances and cancer…..

Not always something widely spoken about. I don’t think people realise how difficult finances can be when you get sick. I have been very lucky. I have had the support of a fantastic company and managers in Aimia, Private health care cashback system, and most importantly the support of my family. Others aren’t so lucky – and frankly I have no idea how they cope!! Especially those with children too.

So you get sick…..You can’t work…. Your company gives you sick pay for aslong as they legally have to…. If you are lucky (like I was) you might get a bit longer….. You are then on statutory sick pay….. £90 a week…. £90 a week!!

Of course you are entitled to more benefits, but who knows what they are and how to apply for them??? Who do you ask???

I managed to get ESA benefit, but was denied PIP. I know many people in much worse off positions than me being denied PIP too.

My critical health insurance through work refused to pay out because apparently my first stem cell transplant was the “cause” of my second. And because the first one was before my policy started they wouldn’t cover me.

So with all this in mind how do you look to the future?? I have recently made the decision to purchase a house (with the help from daddy of course!!), but this hasn’t been without some pretty hefty thinking!

Who knows if I might get sick again in 6 months time, 2 years, or not until I’m 80?!?!

I’m now working for a new company who might not be as lenient on sick pay allowances as they don’t yet know me well. I haven’t got any private health to give out cashback. I can’t get critical health cover or life insurance as I can’t afford the premiums…….If I get ill then I almost certainly won’t be able to pay the mortgage and what happens then?!?!

And then another part of me thinks…. if there is a possibility I might get sick again do I want to tie myself down to a mortgage?? Why not instead go see the world?? Make the most of any time I’ve got. (Pretty morbid I know, but I imagine you all know what I mean) OR do I want to spend my life working for corporate companies so I can have a salary that will mean I can afford the mortgage?

When you are ill you shouldn’t have to be stressing about finances!

How has money and sickness effected you? What are your views on the system? Is there enough help out there to tell you what you are entitled to?





Adventures in Cambodia

I appear to be terrible at blogging when things are going well! I am constantly thinking “Ooo I really should blog about that” but then I never seem to make the time to sit down and actually right it! I felt that after this recent adventure I really shouldn’t let it passed unnoticed!!

A few months ago I made a last minute decision to go with 2 friends to Cambodia (I basically gatecrashed their trip!) The hospital agreed I was well enough to go (granted they weren’t jumping for joy, but they didn’t argue against it!). I was allowed to have all the relevant jabs…. and I was all set to go.

It wasn’t until the few days before going that I realised what a big deal this was. Until this year I have never even considered travelling to outside Europe due to the associated risks with flying and potential treatment out there. I have never done a trip where I hadn’t booked all the accommodation and planned the trip out in advance. This was a real adventure for me!! And to top that I was getting to spend it with some really special people too 🙂 I feel very very lucky and grateful to the hospital and my donors (blood, platelets and bone marrow) who helped to get me to this stage of being well enough to go on an adventure like this!

Amazing place. Amazing people. All so happy and content with life despite having so little. Such a community feel – everybody helps everybody. Really makes you put things into context. What is important in life?? Do we really need all these material possessions or can we be happy with just a little tuc tuc and hammock ? Do we need to be in constant competition with each other or could we not do more to work together? Why do we need to earn so much money? Can we be content with less? How much do we actually need??

Here is some of the highlights of the trip:

Siem Reap – seeing the temples and of course Angkor Wat

Boat trip to Battambang – beautiful way to see all the day to day life in the floating villages

Battambang – Killing caves – sobaring insight to the civil war in 1975

Phnom Penh – the captital city for the water festival (too busy for our liking!)

Kampot – trips to Bokor national park to see the waterfalls

Rabbit Island – beautiful untouched tropical paradise island

Koh Rong Island – beautiful white beaches

And finally via Siem Reap to home 😦


Brain in overdrive!!

It was my 3 monthly check up on tuesday at Kings. Just the standard long wait in Golden Jubilee for blood tests….. and then the standard long wait in Haemotology to be seen by the docs….. and then the standard outcome that the blood results weren’t ready when seen by the doctor (due to the long wait in Golden Jubilee!!)

It wasn’t till I got to the hospital that I realised I was actually a bit worried about the tests. It had been 3 months since my last blood test. I feel absolutely fine, but as in my experiences as a haemotology patient you never feel completely fine until you know your blood test says you are fine!! (There has been too many times in the past where a blood test has shown that things weren’t fine before I felt bad – i.e. low platelets or low white blood cells won’t necessarily come directly with any immediate symptoms)

So as it wasn’t deemed urgent enough to chase I left the hospital without my results, having asked for the nurse to email them to me when they came through. I then decided to go off and do a bit of shopping in my quest to find an outfit for the Third Sector awards next week – which is proving harder than initially anticipated!

So today is Thursday and I have been stressing about my results…. I sent a prompting email to chase, but as not “urgent” then didn’t want to harass too much. Its amazing what your brain can do in this time….. you start to worry…

The rational part of you brain knows that in the NHS “no news is good news” is the normal rule of thumb…..however, the emotional part starts to run riot…. Maybe they haven’t got in touch yet because there is something wrong and they need to discuss a plan with the doctor first?!? I’ve been stressing out checking my emails, even though I know the nurse in question has a clinic on a thursday so I’m unlikely to get a response…..

In the end I phoned the outpatients to get my results…. just for the peace of mind! And of course, they are all fine!! (hb 141, neuts 2.92, platelets 148) But it just got me wondering…. when will the worrying stop??? Will it stop??




No going back!

This is a long overdue update on my life post transplant!!

In general things are great – my blood results are fab, back into pretty much the normal range. I’m on 3 monthly appointments at Kings Hospital, for blood check up. I’ve also just been given the go ahead to start having my baby jabs again. (As part of a transplant you usually wipe out all your old immunities when introducing the new stem cells. Which means all your baby jabs have to be repeated. Its the reason why you still have to be careful with infections for so long). My only real complaints are fatigue (I still sleep at least 9/10 hours a night on a normal night – more if given the opportunity!), bit of mild rashy skin, and some IBSy like symptoms – They make life a bit more awkward, but don’t stop me doing things!

Work wise – in general things are going well….. although currently I’m at a sort of crossroads. I returned to my full time role at Aimia in London in March and slowly built up my hours. I have been doing one day a week in the London office and then working from home the rest of the week. It didn’t take me long to realise that I won’t be able to build this back up to full time. I don’t want to move back to London, I’m just not in that place anymore, yet commuting to London is exhausting. I have been offered to do more time working from home, however I find working on home for more than a day or two hard work!!

Its really frustrating. I’m really enjoying the work I’ve been doing since I’ve been back – I’ve been helping out in our analytics academy developing new training courses for the analysts and facilitating them – I love it!! But now I need to start thinking about the long term.

I would love to take my fitness instructing/ personal training to full time – but as expected this is just too physical and tiring for me. I’m currently teaching around 5 classes a week, and PT a couple of clients – adding to that 1 day in London and keeping up with my Yoga training then I’m pooped by the end of the week!!! It definitely isn’t sustainable to pick up any more classes..

So where do I go now???

I’ve started to look into local roles with the help of recruiters – ideally part time – but you don’t get many part time roles being advertised. So I have applied for a few full time roles available in the area – but there aren’t many in analytics that fit the criteria I ideally want! But now not only am I hoping to get the job…. I’m also hoping that the company will be understanding enough to let me to a phased start to the job…… There is NO WAY I would be able to go straight into a full time role without at least a bit of build up- it would kill me!!

Also my next drama is what if I build up to full time and then realise I can’t do it?? What then??? I don’t want to live to work….. I don’t want to work 9 -5 and then be too exhausted to do anything in the evenings/weekends. Being ill has made me realise life is too short for that. I want to maintain my work life balance. But our all employees as understanding of this? Aimia have been absolutely fantastic, and all my managers/HR have been so understanding – but will a new company with no knowledge of my work ethic, etc be so understanding??? Ideally I would quite like Aimia to set up a new Peterborough office please!!! ha ha!!

So no…. there is no going back to normal….. I can’t return to my old job this time, its too much…. London is just too much for me now…… But how do I find my new normal?!?!?



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:

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



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!!

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!


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!!!


 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!