I'm back

It's been a long long while but I'm back and I have SO much to tell you all. There is just one problem in the last 8 weeks I've lost a few brain cells, become an enforced "druggy" and my body has finally realised it's not very wel! 

Because of this I can't continue my well ordered, well explained on time updates instead welcome to my waffley blog! I'm pretty sure it won't be in any order I think I will just write about what comes to mind at that minute! Have a list of things to cover and il get there eventually, I think! 

Prepare to have your news feed bombarded by me again

Xx

Facts and figures about stem cell donation

In the process of designing some leaflets and posters to encourage more people to join the stem cell register, I discovered some startling statistics I thought I would share! Unless you have had any personal connections with someone needing a stem cell transplant it is unlikely that you have heard about it or understand the process. 

Every 18 minutes In the UK someone is diagnosed with a blood cancer and every 45 minutes it takes a life. Not everyone that has blood Cancer will require a transplant and some can be treated and cured with chemotherapy or a combination if chemotherapy and radiotherapy. 

Only 30% of patients that need to have a donor transplant find a match within their family ( usually with a sibling ). The remaining 70% rely on the stem cell / bone marrow register. The register started in the 70's by Shirley Nolan who's son Anthony needed a donor, unfortunately non was found and he sadly died however Shirley continued to build and grow the register and the Anthony Nolan Trust was established. Anthony Nolan do an amazing job in the Uk recruiting and managing the UK register. Earlier this year the charity Delete Blood Cancer was established in the UK to help recruit more donors. No matter which way you join up you will all end up on the one central UK register. 

There are currently around 400,000 people on the UK stem cell / bone marrow register, this is great however it only represents less than 1% of the UK population?!? Half the people waiting for a transplant never find a donor in time. This needs to change! 

Right now in the Uk there is 1600 people waiting for a transplant and 37000 in the world. They just need 1 bag of stem cells that once donated could go in to save their lives? Unlike an organ, the donor won't miss them! 2-3 days after donating the donors body will have replenished its stores. 

Unlike with blood where you can have any blood that is the same blood group as you, matching for stem cells is more complicated. It is called human leukocyte antigen (HLA) typing. There are over 8500 different markers and we each have 10.  As you can imagine there are millions and millions of different combinations of these. In order to be a match patients with donors for stem cell donation they need to have 10 matching markers ( although transplants can be done if 9 markers match, they are just statistically not as successful ). 

I am now trained via delete blood cancer to sign people upto the register ( via a quick form and a cheek swab ). Posters and leaflets are at the printers and im ready to go! If you are between 17-55 you can apply at www.deletebloodcancer.org.uk or even better if you can get a group of people together eg work colleagues, friends, Dance groups, sports groups etc let me know and il will come down. 

90% of people on the register will never receive a call but if you do this is a picture of someone donating their stem cells, doesn't look too scary does it! 

My radiotherapy

I'm over half way! Today is number 9 of 15 so I'm nearly there! Up to now it's been a very easy painless quick treatment that almost feels like it can't be doing anything?! The most time consuming bit is having a daily appointment you have to go to. 

Once your there it's very quick and I've mastered the stripping off and getting in to the correct position very well! I lie with my arms above my head and the radiologists have to line me up to the exact same position each time. I can't be more than a few millimetres out. 

In order to do this I have 3 small tattoos. One at the bottom of my sternum and one on each side of my ribs, using these and some green light beams the radiographers get me in the exact position and I lie super still. That is the most time consuming bit as the actual treatment is a 15 second blast from underneath me and a 17 second blast from the too then I'm free to go! 

The side effects are accumulative and up to now I've had none, although I can feel some internal burning today. Side effects peak shortly after the radiotherapy course has finished then get better in the following week or two. 

My skin still seems ok but will soon get a little tender like it would If I was sun burnt. I will get that front and back. The majority of my pain is anticipated to be in my oesophagus so that will be raw and at the moment can be compared to reflux. I have paracetamol liquid which I've been advised to take half an hour before eating to help with pain. 

Usually they try and avoid important things in your body as not give any radiation to organs. As my heart has a little tumour inside sat by a valve my heart has to be radiated. This isn't ideal and you would always try to avoid it but if all the cancer isn't gone it will just grow back and all this will be for nothing. My lungs will also get radiated as we can't move them out of the way! This means I may have heart disease sooner than I would have and may have things like scaring to my lungs which would rule me out of the 2014 London marathon but I'm happy to take the long term side effects as the name suggests long is good! 

Radiotherapy isn't usually used as a curative stand alone treatment for non Hodgkin's lymphoma however in some cases of Hodgkins, radiotherapy has been shown to really reduce the size and occasionally achieve a full remission. ( this would need to followed up by a stem cell transplant ). 

My tumour hasn't acted like a normal ( primary mediastinal diffuse large B cell ) non Hodgkin's lymphoma and after biological testing has actually been show to be genetically more like a Hodgkin's lymphoma. Working on this assumption they are hoping I may see some good response from radiotherapy. 

Unfortunately there is no way to see if it is working till you have finished treatment and waited a period of 4 weeks for a PET scan! This is because the effects build up over time and are still working after actual treatment days are over. You need to give chance for the body to 'cool down'. 

Once we have the scan results we can make a plan of action!! The action plan is to get me into some form of remission whether that be complete or a good partial remission, ( pet scan negative or very close ). There is no way of knowing how my tumour will respond to radiotherapy as we haven't tied it before and unfortunately is all trial and error.

The suggested plan after radiotherapy is to try a chemotherapy drug that isn't licensed for patients with Non Hodgkin's Lymphoma. It has however been shown to be amazing in patients with Hodgkins Lymphoma showing a good remission or partial remission in upto 75% of patients. As my tumour is so biologically similar it is hoped it could have the same effect on me. The drug will only work if the tumour has cd30 receptors on the tumour, only 15% of non Hodgkin's tumours have these receptors, luckily including mine! 

Even if I was to achieve a full remission with radiotherapy/chemotherapy I would still need to have a stem cell transplant. That is the only thing that will potentially cure me long term.

So that the plan of action so far! Xx

What is radiotherapy

I am currently just over half way through my radiotherapy have just woken with the start of my side effects so thought it would be a good time to blog about it!

What is radiotherapy? There is a very complex and in depth answer to that question somewhere but I'm afraid I will have to provide the easy answer! 

Radiotherapy is used in cancer care with or without chemotherapy to kill cancer cells. 

Sometimes radiotherapy is used to 'back up' the work chemotherapy has done and to reduce the chances of that cancer returning. Sometimes it is used to reduce a patients  symptoms and other times it is used in the hope it can kill all or a lot of cancer cells, ( that's what I'm crossing my fingers and hoping for ). 

Radiotherapy works by using high energy radiation beams to a specific area which kills the cancer cells. It works by interrupting the cells at a DNA level which stops them dividing and they ultimately die. 

The Beams come from a machine called a linear accelerator, the patient lies still on the bed and the machine moves around them delivering the beams to the correct area. This takes a matter is seconds or occasionally minutes and is usually repeated as a course. I was prescribed a specific dose of radiation split into 15 days ( fractions ). 

There is no pain immediately or during the procedure but side effects do build up in the area treated, this is because as well as killing cancer cells some heathy cells surrounding the cancer as affected, this is usually temporary and go a couple of weeks after treatment. 

The side effects are only in the area that was treated, so for me I have radiotherapy to my mediastinum ( if you put your palm over your heart with fingers reaching up to collar bone that is where my radiation field is ). I will have burning of the skin both at the front and the back. This is because the radiation beams are delivered from the front and the back of me. I will also 'burn' from the inside too, In the area I've been treated it will mean my oesophagus be very raw and swallowing will be painful, currently it just feels like a bit of reflux? I've been assured it will get worse! I have liquid paracetamol  to sip! 

There can be long term side effects from radiotherapy, especially if treating a big area like mine with important things in like my heart and lungs.  This can't be avoided though and I won't be complaining if all I have to worry about is long term side effects! 

That's my mini radiotherapy lesson, hope it made a little sense!! 

Ps the pics are from google and not actually me!! Xx

My heads spinning

I've been waiting for my head to stop spinning from all the things that have happened and are still happening before writing a blog, so It at least had some chance of it making some sort of sense! It seems however my head is just going to go into a bigger spin so I thought I would just bite the bullet and write something. 

I was released from what felt like prison and death row on Friday and was determined to come home and have a normal relaxed weekend which I did, although it went far to quickly! 

On Monday I was woken by nurses trying to sort out referrals to different teams, filling out more forms to enable benefits to come through more quickly now im more poorly. This was followed by another trip to Christies for bloods, seeing a Dr ( to re talk about all the jolly things we need to face ) followed by another CT scan and then home.

Today was a non Christies day and was meant to be a quick trip to Wythenshawe for an echo to establish a normal heart for when I have my transplant. That however like me ended up not being simple! I had my scan done in silence and then was told I'd need to see the doctor?! It seems I have something ' floating' on the end of my central line.  They wanted to do bloods to check for an infection but i couldn't face that again as been checked for infection and had routine bloods for last 10 days non stop and all normal. 

They then said that there was a concern with my tricuspid valve  as it had some ' vegetation' on it? They wanted to rule out endocarditis ( an infection of the heart ). Because that's all I need right now! So I now need to be admitted on Thursday nil by mouth for heavy sedation and to have a trans oesophageal echo ( via a hose pipe in my wind pipe ). Thursday was meant to be my one day off from hospital and appointments for 5 weeks but it seems it wasn't meant to be! 

So now I am under investigation in 2 hospitals just to make sure I don't get too bored!

Spoke to my consultant today and she is very sweet and is my own little fan club fighting my corner so it's always nice to speak to her. 

I'm always surrounded out of the hospital setting, with amazing family and friends who really couldn't do enough for me. Friends have set up a fundraising page called mend Maddie's mummy (  http://gogetfunding.com/project/mend-maddie-s-mummy ). Other friends have been doing things to raise money and awareness and so many people have signed upto the Anthony Nolan trust to go on the list to be a stem cell / bone marrow donor. I really am blown away. 

There is probably an awful lot of things I'm missing out of my update but my brain is a bit far behind and a bit back to front so I'm sure it will come to me at some point soon, maybe! 

How life can change so quickly

Life can change so quickly, I've just gone to find tweezers in the bathroom cupboard and decided it needed a clear out. 

I binned all my random conditioners seen as I'm about to be bald again, I cleared out my 27 pregnancy tests and 15 ovulation tests that aren't going to be needed again. Thought it was a good time to chuck all my Ivf medication I still had left over. This time last year  we had spent 7 months having numerous attempts at fertility treatment and were about to embark on our last go of Ivf of the year. We were told we had 70 % of twins and spent our evening talking cute baby names and looking at twin cots ( anyone that knows me knows that's me all over,  naming babies I haven't even conceived! ). 

Who knew a year down the line I'd be here, coughing my guts up with a temp feeling pants 9 months Into a ( never ending ) nightmare. Not quite what I had planned! 

My 'achievement' of the day was ordering loads of books for Madeline, my mummy is poorly, mummy loves you no matter what, mummy says I'm the best medicine, I miss my mummy etc etc 

I want to be getting up at 6 am and working all day, I want to be tired because I've not stopped all day and been running round after Mads. Not because I've lay on the couch and wasted another day watching tv. I want to be able to go on our holiday to Spain that was booked for next week because Madeline doesn't remember ever being on a plane. 

I spend every day trying to think of things to do that wont go away, things of me that can go in a box and last forever. I'm currently baking mine and Madeline's hand prints in play dough  so they won't get squashed and be gone forever. 

I want to press rewind 

how to be a bone marrow donor

Now i am a self taught lymphoma and stem cell transplant professor ( for strangers reading this, i do not hold any qualifications and may be over estimating my knowledge a little).I wanted to spread some awareness of things that people don't know much about. Lymphoma being one of those and stem cell transplants being another.

So my aim is to demystify these things a little! i will start with finding donors for people waiting for allogenic stem cell transplants,
Bone Marrow Donors...... has that always sounded a tad terrifying? It did to me i have to admit but when i gave blood i was a brave girlie and went on the list. I secretly hoped that no one would ever ring me as all that; hospitals, general anaesthetics, bone drilling and marrow sucking didnt sound like my cup of tea. i was never called and now i've been chucked off the list as i am no longer desirable!

Now with a little knowledge and 11 years older i realise that being a donor isn't that scary after all! You just need to get on the list and then in all likelihood you
will never be called. If you are called you would be asked to have a further blood test to double check you are a match with the person waiting for a transplant. If you were and decided to go ahead your cells would be collected.

Bone marrow donors are the same as stem cell donors. The transplant i will have can be called  a bone marrow transplant or a stem cell transplant. Traditionally bone marrow was removed directly from donors under a general anesthetic and actual bone marrow was removed via a simple procedure and that was infused to the patient. With advances in technology very very few collections need to be done by collecting bone marrow. The preferred method is collecting stem cells from your bloodsteam this takes 4 hours and no anesthetics or long hospital stay. You will have a daily injection of G-CSF (granulocyte colony stimulating factor) for the 4-5 days leading upto the harvest. I have these each chemo cycle and they are a pre filled syringe with a tiny needle ( like insulin needle ) that you can give yourself in your tummy or a nurse will come round and do if you prefer. I've never had any side effects but the ones listed are mild flu symptoms or leg pain, this is mild and may last for a a couple of days. The G-CSF encourages your bone marrow to produce stem cells and encourages them to be released into the blood stream so they can be collected easily.

On the day of collection you can eat and drink normally and go into hospital. you have a needle in one arm and a needle or a cannula in your other and blood leaves one arm and goes through a machine where it is spun, the stem cells go into a bag and the rest of the blood gets returned to your other arm. At any one time there is only 160 mls of blood out of your body and in the machine so you should feel fine although some people feel a little light headed. you have to sit still for 4 hours but are sat in a chair and can read or talk to a friend. When your 4 hours is up your free to go.......... that is it. You may have just potentially saved someones life!

Your stem cells are frozen in liquid nitrogen and defrosted on the day of the transplant, they are given to the patient over 40 mins and that is that ( i will cover that in detail next time)

I hope that sounds a lot less scary than my perception!

Less than 30% of people find donors within their families so rely on strangers. There is a 25% chance that each sibling you have may be a match however other members of your family are not tested routinely as not likely to be a match.  Currently there are 400,000 people on the uk register and so far 8000 people have been matched and had transplants. If there are no donors found in the uk then an international search is done which looks at 12 million people on registers around the world. At any 1 time there are 120,000 people in the world waiting for transplants. ( thats the statistics out of the way!)

How do you get on the list ? In the UK the Anthony Nolan trust do an amazing job of recruiting and managing a proportion of the register. If you are between 16-30 and weigh more than 50kg you fill in a form online at www.anthonynolan.org they send you a pot you spit in it and post it back, and thats it your done you will stay on that register till your old! If there was a choice of donor younger people would always be chosen first so that is the age group the Anthony Nolan trust focus on.

Delete blood cancer are a new charity in the uk that are working alongside Anthony Nolan and can recruit people 17-55 onto the register. Again this is a simple process that involves a cheek swab. You can apply online and te swab is sent to your home to do and return www.deletebloodcancer.org.uk

The other way of getting on the the British Bone Marrow registry ( if you are between 18-50 ) is to go and donate blood ( at any UK blood donation site ) and when you do tell them you want to be put on the register and they will send an extra sample of blood and you will be placed on the register and stay there til your grey and old . www.nhsbt.nhs.uk/bonemarrow

Hope that helped to make it a little clearer?