Remission (for now)

Finally some good news. My latest bone marrow biopsy sample as being in remission, i.e. no cancer cells could be found.

Now, although this is good news I am wary to get too excited. All this really means is they didn’t find cancer in that particular sample. And given my track record of relapsing (4 times so far!!) then we all agree its highly unlikely that I am “cured” its just all gone to sleep for a little bit. How long that little bit is? No one knows…. months? years? who can tell!?!?

Now the challenge for me is to try and get on with my life. Take advantage of the fact that I’ve got a guaranteed treatment break for at least a few months (Assuming I avoid any infections of course!). So I need to take the plunge and start allowing myself to plan a few things rather than living in fear that things will end up being cancelled. Take the time to start doing rehab, get myself stronger and prepared for the round 6 of the fight!

 

Living for the moment?

Living with ‘incurable cancer’ or a chronic illness it becomes hard work to plan anything, or to make any major commitments in life. I find I avoid planning things so I can avoid the disappointment of not being able to do them. Too many times in my life have I ended up having to cancel events or sell tickets because I’ve ended up in hospital with infections etc. I think its one thing that unless you are harbored with the uncertain world people like me live in, you will completely take for granted.

Today was my kings appointment. Blood test and biopsy done. Initial blood results not overly fantastic but not hideous either. My platelets are still lower and now my neutrophils have dropped down to 0.58 too. So not a great indicator, however it will be the biopsy that will really give us any answers (assuming its a good enough sample to do so!) So now I’m in the limbo time of waiting to see what the results are. Waiting to see what the next few months might look like for me…. and its all this waiting that I can’t bear.

When I was chatting to my therapist on tuesday she used quite an interesting analogy. “If you are waiting for a train and you are told its going to be delayed by 2 hours would you just sit there and stare down the track waiting for it to appear? – No, you would go get a coffee, make a phone call, etc. ” So putting this into the terms of my life, I’ve now got around 2 weeks to wait around for my bone marrow results. The one thing I know is that its unlikely things will change in these next two weeks, so why not take advantage of that, why not make the most of the time when I’m feeling good and do something I want to do.

So I’ve booked myself a week in Greece……. F*ck it!! The sensible part of me is trying to argue against the cost, etc and all that. But another part of me just thinks I should take advantage of a good situation and just go for it!! My savings are going to run out at some point, might as well spend them on fun things to remember!

 

 

 

 

 

Prevention is better than cure!

Well today was an eventful day!! I went to Kings to get the results of my chimerism (% donor) blood test and find out our next steps. And it was a bit of a mixed bag!

My normal blood results were still down after the flu (platelets 66, neuts 1.08). My chimerism however was quite interesting. Now this part gets a bit complicated, even I don’t understand the full ins and outs of it but….. My CD3 level has changed from 62% to 80% donor 2, which is fantastic. However, my CD15 level has changed from 98% to 90% donor 2. According to Austin (my consultant) this is a bit of a red flag. Its only a minor drop, but its not something we like to see.

The plan now is to be proactive. We know things are a bit askew, so rather than just giving more DLI (donor lymphocyte infusion – top up cells from my donor) we are going to partner it up with some more chemotherapy. The chemo shouldn’t be as hardcore as the last lot I had and there is a chance I might be able to have it as an outpatient (Austin says I can, but as its Peterborough who will be administering the chemo they will make the call on what protocol we follow). I’m crossing fingers and hoping for outpatient as it makes the process so much easier mentally, but if I have to go in then I have to go in. Generally I’m feeling pretty positive just to have a plan in place, so I will roll with it.

I then had the treat of an unexpected  bone marrow biopsy. I argued against it, but they want to be able to see the starting point of the bone marrow before administering the chemotherapy. I feel sorry for the poor registrar who agreed to do it. Austin did warn her I was “a bit tricky” but I don’t think she knew what she was in for. A “20 minute procedure” took over an hour and I genuinely lost count of how many needles we used to attempt to get some marrow out. I just have so much scar tissue now – I’ve been having this biopsies since I was 17 (I’m now 31).  Luckily she managed the pain very well and i didn’t suffer much at all beyond the initial local anesthetic. 🙂

To top the day off I got home and realised my bone marrow site had bled through the packed dressing, two tops and my coat! After a call to the hospital I have been lying on my back watching TV for an hour to apply pressure and it seems to of slowed down, so hopefully I’ve avoided a trip to A&E for platelets!!

So now I just have to wait for my two hospitals to talk to each other and get me booked in for chemo…. anyone want to place bets on how long that will take?!?! I don’t feel in a huge rush this time – but would hope to start before the end of the month. Lets see what happens!

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

 

 

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 (3^rd 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 3^rd 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 5^th 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!

 

 

 

 

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?!?!?!

 

 

 

Watch and wait

Just a brief one today from me…..I didn’t want to jinx it earlier on, to be honest i still don’t want to! However, my blood levels have been stabilising over the last few weeks. My platelets are soaring back up at 107 again. I am still neutropenic (have a very low immune system) but they are slowly creeping up. This means that I haven’t YET been admitted for my ATG treatment. It doesn’t mean I’m completely  out of the woods. My chimerism still hasn’t improved. However, it is fantastic news and I’m trying to enjoy my time at home!! My bloods will continue to be checked weekly and will have my chimerism re done in October to see if any improvement……. will just have to wait and see……

Post yoga weekend I’ve been sleeping like a baby so I’ve had a lot more energy floating around to try and focus on getting a bit stronger. Even been hitting it back up at the weights in the gym.

In other news I decided to attack my mop of hair today…… it was beginning to look like a mop head! Hope you agree it looks a lot better!!! If nothing else it looks like a hair cut, rather than just a grow out attempt. Might even go get some jazzy flowers shaved into my head or something! (before anyone panics I haven’t lost any length on the top so it is still growing, the sides will catch up later!!) One good thing…. when you realise you are bothered about your hair style then you know you are starting to feel a bit better 🙂

 

 

 

 

Emotional Release

When I started writing this blog entry on sunday I was sat on the beach at Woolacombe leaning against a rock, enjoying the September sun but trying to hide from the powerful wind. I was damp from the sea, covered in sand and shielding my eyes from the sand being blown around with a scarf wrapped round my head.

I hadn’t planned to go in the sea at that time, and certainly was not prepared. I had been walking down the beach and suddenly had the urge to get in the sea. Thought to myself I will walk back to the car in a bit to get my bikini and towel and then suddenly changed my mind. I didn’t want to wait. I didn’t care what was sensible. I wanted to go in the water then and there!!

Fortunately (for everyone else) the side of the beach I was on wasn’t busy so I stripped off and ran in!! It was the best feeling ever!! So invigorating! So energising! That true feeling of the waves crashing around you and washing away the stresses and emotions to somewhere far away…….

This weekend I was on a yoga retreat with Helena Bingham and crew a Natsley Farm in North Devon. The location was AMAZING!! Its such a fantastic house, huge spaces and its own heated pool and hot tub. I don’t think I’ve every stayed in a holiday rental quite so luxurious and in such a stunning location. Would HIGHLY recommend it for anyone wanting to go away in a bigger group ( http://www.natsleyfarm.co.uk/about).

It was also a great group of Helena’s friends, all with their own fantastic qualities and quirks 😉 It was so interesting to speak to people with completely different lifestyles/backgrounds but yet with one thing in common…. yoga. In a strange way you also open up more to new people in these environments too. I learnt a lot from the group with their advice and their ways of living. So many different hints and tips on things that could help with my various ailments, even simple things like adding some extra spices into my diet.

The weekend involved over 8 hours of intense yoga….. strong sessions on hip openers and shoulder openers…. Yin yoga with hideous 5 minute holds… breathing exercises… meditation…. Yoga nidra (finding that blissful place somewhere between consciousness and sleep where you are truly at rest).

The saturday/sunday afternoons were left unstructured for our own time. I found this all a tad overwhelming. There was no one to suggest I did anything, it was all my own decision. Did I want to go for a walk? Or did I just think I ought to go for a walk for exercise and to make the most of being there, rather than because I WANTed to?? Did I want to just chill out? Did I want to be in the pool? Did I want to read? etc etc…. Too many choices… not enough structure. I think I’m so used to planning out my days around hospital visits, classes, seeing friends that I don’t stop and think what I actually want to do in that moment. I just plan my days so I don’t have that opportunity. Then when given that opportunity this weekend, I really struggled!!

When you take all the stresses of everyday life away, what do you actually want to do?!?!

With all the choices and all the intense yoga sessions by the sunday afternoon I got myself in a bit of a jittery state! I was crying, but I didn’t really know why. I didn’t know what to do with myself! It was like the flood gates had opened. A couple of the girls were still around and chatted with me and helped to support me. Maria suggested I go to the beach, initially I wasn’t sure as I didn’t want to drive, but when I got there it was just beautiful. Coming down the hill into Woolacombe with the sun shining, it was just stunning.

This is what led to the skinny dip on the beach! I walked one way down crying, and after my swim and journal writing I walked the other way almost smiling.

Sunday evening/Monday things still weren’t quite right with me. I was still a bit jittery, and it was quite a tough journey home with bowel issues (probably purging the emotions fromt he yoga too) and bad traffic. But when I got in and finally relaxed in bed I had the best nights sleep I have had for aaaaaaggess!!! Even my garmin watch agrees with me!

So over the next few weeks I plan to set aside time to establish what I need to learn from this weekend. What I can take from this weekend… what have I learnt about myself and from others. What would I benefit from continuing in the daily/weekly routine. e.g. daily practice/meditation, eating a healthier plant based diet, spending more time being in the moment.

Focus on the here and now…..

 

The waiting is over…..

…. and there are no cancer cells!! No leukaemia cells and no dysplastic cells (blasts)!! Woop woop!!

This is fantastic news, but it doesn’t mean I’m completely out of the woods. I still need to have further treatment but this won’t be quite as traumatic as full on chemo (I hope!!)

Now I’m potentially going to fall into techy haemotology language now so bear with me if I do (equally comment and ask questions if I have lost you!!)

So the reason they think my blood counts have all dropped is because of a little internal battle between my two donors*, here by known as donor 1(the bad guy) and donor 2 (the good guy). As part of a bone marrow biopsy they check something called your chimerism which is basically what % of your cells are donor 1 v donor 2 with the hope that the majority are donor 2. In my case my CD3 (produce t cells – part of your immune system) chimerism is nearly all donor 1 (around 80:20 split) so this is the part they are particularly concerned about.

*Note that if you have only had one transplant this would be your cells v donor cells!

To add to that the cellularity (% space in bone marrow that as stem cells in) of my bonemarrow has also decreased. Previously this was 70% and now it is 40%. This has reduced very quickly in just over a month.

Therefore the concern is that donor 1 is starting to take over, but donor 1 was rubbish so I’m not producing blood cells in the rate we would like, etc. And also donor 1 might bring with it my leaukaemia.

So now what do they plan to do with me??? Now I’m such a rare and unique person I don’t think this has ever really happened before!! So of course I’ve got all the doctors scratching their heads and wondering what treatment to give me. My doctor actually laughed when I asked her if the treatment had worked before in the past for others!! Silly me!!

The basic plan is to kill off donor 1 and give me a top up of donor 2.

To kill off donor 1 the discussed plan was a course of ATG – Anti-thymocyte globulin. This is a collection of either horse/rabbit antibodies which will kill of my t- cells and to stop the rejection of the bone marrow. (It is predominantly used for treatment for Aplastic Anaemia and I had 2 courses back when I was 17/18).Mostly nasty flu like side effects, 18 hours on a drip a day, and a few weeks as an inpatient.

The top up of donor 2 will come in the form of DLI (donor lymphocyte infusions). So it will be a infusion containing some white blood cells from the good donor 2. Risks here are mostly more GVHD.

This will hopefully give donor 2 a chance to become more dominant and take over my bone marrow fully, and hopefully restore peace and harmony! Thus allowing my blood counts to increase and me to be all better! (well that’s the plan anyway).

So basically  I just need to suck it up and do the shitty 3 week stint in Kings again….. A few months of DLI….. and then hopefully everything will be fine and dandy!!! Now just to wait for dates and plans from Kings!

 

 

Drug cocktails

So it turns out that some drug cocktails are bad!

As I was taking the oral antibiotics I seemed to start feel worse every day I took them. This can normally happen but I’ve not noticed it quite like this. My diarrhea was watery and stopping me from doing things. My appetite was gone. I had a revolting taste in my mouth. All fairly standard antibiotic side effects. However, I also noticed i had tremors, my joints were aching, my muscles were cramping/spasming easily, i felt faint/dizzy, and just so so so tired.

Turns out that the antibiotic (clarithromycin) I was on effects the levels of Tacrolimus (immune suppressant) in your body.  And in my body it had over doubled it!!! So this might be an explanation to my more exaggerated side effects!!

I hate taking medication!!! They all have some form of side effects. And then it just gets ridiculous when you have to take a load of other meds just to get rid of those side effects.

So I have finished the antibiotics, and now we are trying to get my Tac levels back down to something normal in my body. Have already noticed an improvement over the weekend, so fingers crossed this will continue to improve!!!