Trusting the experts

Today I went to Kings for a clinic appointment, blood tests and chat with my consultants. It was a day of lots of waiting – I had 80 people in the queue in front of me for blood tests! And after arriving at 11am, I didn’t get to leave the hospital till gone 4pm. However, it felt like a very worthwhile appointment as I got lots of my questions answered.

I actually ended up having a consultation with two of the senior consultants (Austin and Victoria) and two specialist nurses! I got the full results of my bone marrow biopsy. With the highlights being that I have c.6% blast cells, so still quite a low level. But all of these cells contain the defect monsomy 7, which is a high risk genetic marker.
I expressed all my concerns about the current treatment plan of azacitadine not being strong enough or worthwhile pursuing as we have done it before and it just doesn’t seem like an appropriate drug for someone my age.
They explained why they were taking that action and the overall plan. The basic plan is to get me up to 100% donor. So they believe that should be achievable through the azacitadine and donor top up cells. This is as long as the disease doesn’t progress as quickly as it did in 2015, and the hope is that this donor is strong enough to fight a bit harder. They are going to give me donor cells as soon as they are available. And then my next round of aza will be on the 16th July when I get back from my holiday (they had no issues with me having a holiday and delaying chemo one week – only potential issue with me flying as my platelets are low, but I might be able to shift the holiday to all train transport)
We have booked in a Bone marrow biopsy for the 6th August to see how things are progressing after 2 cycles of the aza. Obviously my bloods will be monitored in between to which will be an indicator.
They are also looking into using an immune blocker drug. The drug has been approved for other types of cancer but it’s still in the clinical trial stage for blood cancer. Unfortunately I don’t tick the boxes for the trial as I’ve had a transplant, but they are hoping I will be able to use it on compassionate basis. Failing all of this we will move onto stronger chemo. But their main thing is they want to exploit the donor I’ve got now as much as possible and try and push out my old donor and me!
But the most important thing for me today is that I have left the appointment feeling confident and safe. Not necessarily confident about my prognosis and that we are going to beat it, but confident in my haemotology team and that they are going to do all they can for me.
In other news….. I have contracted shingles… AGAIN…. although this time it is horrific. The rash itself doesn’t look that bad, but oh my god it is painful. Its a consistent nerve pain – so like a shooting pain around the site of the rash that travels down the left side of my body and makes me spasm. The skin all on my left side of my body, and the rash is really hyper sensitive when touched too. I’m on some strong pain killers and anti viral medication, but so far the aren’t doing very much and consequently I’m not getting much sleep. We are upping the dose tonight in the hope I can get some sleep. For those who don’t want to see my spotty booty then look away now!!
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Day one done…

…..6 more to go!

Is it strange that is still doesn’t feel quite real that I’m starting chemo again. Even when the nurses were injecting it into me it didn’t feel real! I cycled to work and the hospital like normal (nurses think I’m nuts!). Granted I’m a bit tired but that’s from my besties Hen party at the weekend, nothing much to do with my illness! To be honest I wouldn’t even really know i was ill if it wasn’t for bruises and the blood test results!

Today went without any issues…… Signing the consent form first. Doctor taking me through all the various things the chemo can do to me….Reduce my bone marrow function (reducing red cells, platelets, white blood cells), cause gastro issues, blood clots, organ issues, soreness around the sight of injection, potential hair loss etc etc etc…. What fun it is to go through that! Luckily the last time I had this drug I didn’t suffer too much other than mostly fatigue, so hopefully it will be similar this time round.

Then the nurse hands out my take away drugs….. something to make me poo…. something if I can’t stop pooing….Something to help the nausea…. steroids for inflammation….. And then two nurses stab me with way to big smiles on their faces as I’m whinging that the steroids are going to make me fat!! ha ha!! (Steroids didn’t use to be part of  the regime with this drug, and to be honest I think I might ask to not have them as they weren’t necessary last time. Will see how I go and if I think they are being helpful or not)

Its always with mixed emotions I go to haem onc. I love a catch up with the lovely nurses,  and randomly a good friend I met during previous treatment, but don’t like some of the memories and associations! For the time being I’m just going to try and focus on well I’m feeling and not to dwell on the past. No point!

I did manage to have a little 2 minute chat with my consultant at Peterborough today. i asked him for his opinion on my treatment plan, and he has a similar view to me…. We have tried the aza twice before, maybe now its time for something different. But the problem is what is that??!?! He says there are drugs being trialed in America, etc. Potentially kings might be able to access some of it??? We will see. I’m keen to get the full results of my biopsy and talk to my kings consultant again soon. See what they have to say.

In the meantime, I will slog through this first round of aza, get my top up of donor cells and hopefully be working towards keeping it at bay for the time being. But I’m looking forward to a proper action plan, with a bit of grunt behind it!!

Life’s curve balls…

So it has been months since I have last blogged….. I have very much fallen guilty to not blogging when things are going well! Life is going well, although as ever it likes to send some curve balls.

I’m settled in my new job at BGL. In April I bought my first house and am loving having my own space (probably as much as my dad is loving having his!) The decorating/furnishing is very much still a working progress, but we are getting there!

Unfortunately just as life is starting to fall back into place my health hits it apparent 2 year cycle….. On Tuesday I paid my 3 monthly visit to Kings Hospital where it was flagged that my platelets had dropped to under 100. The decision was made to take a bone marrow biopsy to  determine the root cause, with the hope it was just going to be a blip.

On Thursday afternoon I received the phone call from my consultant telling me that it isn’t a blip and actually my cancer has returned. We are awaiting the full results of the biopsy over the next week or so, but we know it definitely isn’t a blip.

The good news is that we believe we have caught it in the early stages of relapse. This means we should be able to treat it with outpatient chemotherapy drug called azacitidine which I have had before. This will be combined with some top up cells from my donor to try and wipe out the cancer.

Emotionally this has all come as a massive shock to be honest. I’ve been so well and haven’t had any symptoms other than bruising and more frequent headaches, but nothing that would have been a real red flag. I don’t yet feel upset or angry. I think I’ve accepted it, although I’m not sure how real it all feels just yet. Think it will need some time to digest.

My plan is to continue as normal for as long as possible and just take each day as it comes. Treatment will start once communication has properly occurred between Kings and my local hospital and they have fully decided the POA!

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! http://www.thirdsectorexcellenceawards.com/finalists/emma-paine/

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?!?!?

 

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