Friday, 26 April 2013

Anthony Nolan Trust

If you have read my previous blogs you will see that I recently had a stem cell transplant from my brother to save my life. I was very lucky to have my brother as a match for my transplant. Unfortunately not everyone has siblings and if they do there is only a 1 in 4 chance that they are a possible match. In this case, people have to have unrelated matches from an unrelated donor. This donor could live anywhere in the world and could save your life. I know two people who have had unrelated transplants and their donated cells came from a German donor. The problem with this is not everyone can find a match as there are not enough people signed up to the Anthony Nolan register. 

It is simple to do just go to http://www.anthonynolan.org/ and fill out the application , they will then send you a pot to spit in where they store your DNA and if you are ever needed for match you have to go to your hospital and have your cells taken read my blog Stem Cell Transplant as it will explain in more detail. I want to make people more aware of Anthony Nolan. I
f you can save a persons' life while you're alive yourself why not? 

PLEASE SIGN UP!



Christmas Surprises

Unfortunately I was told that I would most likely be spending my Christmas in hospital. I felt devastated as Christmas is a really special time for me and my family. We go all out and have EVERYONE round for dinner and it was also little Esme's first Christmas so would be even more special. The thought of missing it upset me so much and made me cry.
 One person who made my Christmas time really super special when I was in hospital was my very special friend Kath and her amazing mumma. At the end of November, Kath came to visit me in hospital and brought up a huge bag full of gifts. She said that her and her mum had wrapped a present up for me for each day in december so it was like an advent calendar but a present  instead. It was really EXCITING and was so so thoughtful of her and her mumma. 

December 1st came and I was so excited to wake up to open my first gift. Each day I would look forward to see what would be next, it was such a thoughtful thing to do and made my time in hospital a lot more enjoyable . I love kathy and her mum and appreciate it so much! :) THANK YOU so much! I can't thank them enough x
I took a photo of each present as family & friends were getting involved and asking me to let them know what I got each day, everyone was excited :) Even the nurses and hospital staff would wake me up early in the morning as they were so excited to see what the present would be that day.



 Luckily I was discharged from hospital on 23rd December, 2 days before Christmas which was fantastic. I was also able to go to the pantomime on Christmas eve, which we do every year. It's a family tradition as it's my aunties birthday.

My Christmas Day was spent at my Auntie and Uncle's house (the ones who got married) Wedding In A Brewery . It was a special day and we opened gifts, had a huge roast dinner, ate chocolates and watched crappy Christmas tv. 

 It's a Christmas I will never forget and was so lucky to spend it with my family. 

Thursday, 25 April 2013

Wedding In A Brewery

When I was diagnosed I didn't was dreading having to stay in hospital for months and miss all of 2012 planned events. The birth of my niece & my auntie and uncles wedding. I really wished and wished that I was well enough to make it to the wedding.

As the wedding date came closer I was expecting the worst. I had been looking forward to the wedding for a few years and my auntie and uncle asked me to be a witness along with my cousin. I was over the moon and couldn't wait, I just had to wait for the doctors decision on when I would start my next round of chemotherapy. September 15th came and luckily my doctors allowed me to attend the day and stay overnight. AMAZING NEWS . Although I had to return to hospital early in the morning to start my next and final round of chemotherapy I was so grateful to be able to attend. 
The wedding was at St Austell brewery. I got picked up from the hospital and travelled straight there. My family were all already at the hotel as they went up the night before and had a meal etc. I was bit gutted I missed that but so so happy I could make it to the wedding day. When I arrived my auntie was getting ready for her big day. My best friend Kate was doing her makeup and she looked beautiful.
Everyone was relaxed and getting ready for the big day. Ella was a bridesmaid and looked really beautiful. 
I decided to wear my wig to the wedding (it's the only time I have wore it really.) I didn't know a lot of people who were attending and felt more comfortable wearing it. A lot of people said if they didn't know they wouldn't have noticed it was a wig this made me feel good. 





They had an amazing wedding cake. Not just an ordinary wedding cake, but a cheese cake 'literally' it had different cheese tiers. We ate the cheese in the evening with a selection of assorted breads, chutneys and grapes etc. YUM YUM

 I had such an amazing, busy day. Tired was an understatement It but luckily my auntie and uncle drove their camper van and parked it outside the brewery so I was able have a few naps throughout the day which made me feel much better:) It felt nice to get away from hospital and forget.  After such a fantastic day we all travelled back to the hotel where we stayed and all woke up together and had a lovely full english breakfast. After, I returned to the hospital to have my next round of chemotherapy and to continue my journey to fight cancer. 



Always smiling x
 

Esmé Lumen Tomlinson

June 3rd 2012 was another day that changed my life..the day I became an Auntie. (Well 'sort of' - my cousin had a baby but we are like sisters..confused.com?) It was the most exciting time in my life. Although I was sad at the same time as I couldn't see her in person or hold her until I had a hospital 'break' home but we did Skype every day, and my cousin Skyped me when she was in labour crazy I know.
Esmé Lumen Tomlinson was born at 8:55 weighing 8lbs. I had my first cuddle with her on the 2nd July, when she was nearly a month old. It did upset me that I couldn't hold her before then but it meant that I had so much to look forward to while in hospital and kept me fighting. I had a lot of cuddles that day, It is weird to think that this was nearly a year ago.
Me having my first cuddle with her was so emotional I actually cried! 
The little girl on my left is my younger sissy, Ella who I love lots too.  
There's nothing more I love than spending time with my wonderful family.

Brother's Prom

Even though I was Isolated in hospital for 8 months I managed to be involved in as much I could with the events we had planned throughout the year. Although It was hard not being as there in person. 
One thing I was really upset about missing was my younger brothers prom. Who doesn't want to see their little brother all dressed up in a suit looking his best? Unfortunately I couldn't leave the hospital to go to his prom as I was in isolation, I was devastated. On his prom evening he surprised me and took a detour in his limo to the hospital dressed in his prom suit. Because I had really amazing nurses they let me quickly go out of my room so I could have a few photos taken with him, he looked handsome! 
Me and my brother.
My family skyped me so I could see him turn up in his posh limo.

Wednesday, 24 April 2013

40 Days

Because my immune system was non existent after having my chemotherapy, I stayed in an isolated room. This meant that I couldn't leave the room until my blood cell count was at a certain level. It used to take up to 30 - 40 days. 
Yes..It did get extremely boring and annoying, and I had to find a lot of things to do to keep myself occupied so I didn't go stir crazy.
There are a number of things me and my family used to do in hospital to keep ourselves occupied.
  • Watch TV - it wastes so many hours.
  • Watch DVD's - I watched all my favourite films, then went onto watching boxsets. Prison Break, The Vampire Diaries, Pride and Prejudice and Sense and Sensibility.
  • Complete work - Any college or uni work you have to complete. I finished some of my business apprenticeship paperwork.
  • Do A LOT of word puzzles - Word Search, Quizzes, Sudoku and Crosswords.
  • Colouring - As 'childish' as it sounds I found that colouring used up a lot of time and whatever your age, it is always fun to do. 
  • Painting by numbers - Another 'childish' thing to do but you'll be surprised how many hours you can kill when you're concentrating.
  • Jigsaw puzzles - These again are very time consuming and always fun to do when you have nothing to do.
  • Blog & Vlog - This is one thing I wish I had done whilst in hospital but it never crossed my mind. I was too focused on getting better.  It wasn't until when I left hospital and someone said to me that I should start blogging. One thing I regret is not starting one in hospital. I recorded a lot in a notebook which was useful when I started to write my blog. 
  • Youtube - Watching you tube can be so interesting and time killing as start watching a video and then 3 hours later you are watching a dog talking. What!!
  • Board Games - Monopoly, scrabble, guess who and card games. 
  • I pad/PS3/Xbox - The internet is very time consuming i-pad apps can take up a lot of time, my auntie bought me the sims 3 so I spent a lot of time building my dream house. 
  • Skype - This was a huge life saver during my treatment. I could keep in contact with all my friends and family and was never alone as could always Skype people. I had time slots and used to Skype at least a few people a day.  I watched my cousin in labour on Skype and even went to a few parties. 
At times we would even make up our own games. Once when I was sleeping my mum and friend Kate thought it would be funny to play buckaroo on me and try and place as many items on my body before I woke up. This became a regular game for us to play and passed a lot of time. You have to see the funny side of things when you are in a situation like this. :)
Me and my mum on Skype to my brother & sister.

Tuesday, 23 April 2013

Stem Cell Transplant

A stem cell transplant wasn't the first treatment decision to cure my cancer but as chemotherapy didn't work, I had to have one.
 If you read my first blog post The C word you will have more of an understanding.  
A stem cell transplant is used to increase the chance of a cure or remission for various cancers and blood disorders. The treatment requires a lot of nursing and medical care for a number of weeks. 
What is a stem cell transplant?
A stem cell transplant involves taking healthy stem cells from the marrow or blood from one person and transferring them to another person. This is to treat people with damaged bone marrow so the new stem cells replace the damaged cell production. A stem cell transplant is also known as a bone marrow transplant. 


'I had intense high-dose of chemotherapy and total body irradiation so all my stem cells were destroyed. I was then given my brothers 'healthy' stem cells to rescue me.'

Where do stem cells come from?
There are two different ways you can collect cells, either your own or another persons:
An autologous transplant

This means that the stem cells come from your own body. They are usually collected when you are free of any sign of disease (when you are in remission) following chemotherapy or other treatments. The stem cells can be used soon after being collected and can also be frozen, stored and used in the future if needed. 

An allogenic transplant

This means the stem cells used for the transplant come from someone else - a donor. This is often a close relative such as a brother or sister where there is a good chance of a close match. Unrelated donors are also matched to people needing a transplant.

How stem cells are collected:
-From the bone marrow. This involves a small operation to collect some marrow from the pelvic bone.
-From the blood. The stem cells in the blood can be collected (harvested) by a machine called a cell separator. The blood flow is diverted from a vein in the arm to pass through the machine which separates out the stem cells. This procedure takes about 4-6 hours. Drugs are given a few days before this procedure to stimulate the body to produce more stem cells in the bone marrow which spill out into the blood.
-From blood taken from the umbilical cord of a newborn baby.
'In my case, stem cells were collected from my younger brother, Kieran. He was a perfect match for me which was very lucky as there is only a 1 in 4 chance that a sibling could be a possible match. He had his cells collected from his blood using a cell separator machine. He said that it was a really easy procedure and he would 100% do it again. He is my little lifesaver. ♥'
The photo above is of one of my nurses Claire holding the stem cells. 
This isn't what I imagined them to look like at all. 
How are stem cells given?
It is very similar to having a blood transfusion. Following the intense course of chemotherapy and radiotherapy, the solution containing stem cells is given into one of your veins via a drip. The stem cells travel through the bloodstream and end up in the bone marrow. Here they start to make blood cells, It can take several weeks for the bone marrow to recover and make enough new blood cells.
What are the main risks of having a stem cell transplant?
There is a number of serious risks with having a stem cell transplant. For example:
-Infection is the main risk. Following the intense chemotherapy and before you bone marrow is working again, you have extremely low immunity. During this time you are at risk of serious, life-threatening infections. This is why antibiotics are given a lot post transplant and you are nursed away from other people until your bone marrow has recovered. This usually takes up to several treats. 
- Bleeding problems from the low level of platelets.
- If you have had a transplant from a donor there is a risk that the match will not be perfect and the donor's cells may react with your body's cells. This is called Graft vs Hot disease. 
- There is a risk of short-term and long-term side effects from intense chemotherapy and radiotherapy. 
I hope reading this has gave you more of an understanding of the treatment I have received. 
You can sign up to the bone marrow registry here. 

Monday, 22 April 2013

Acute Myeloid Leukaemia

I have researched some information about the cancer I had, AML and wanted to explain AML in more detail so it is easier to understand. 

What is AML?

AML is a type of Leukaemia, It stands for Acute Myeloid Leukaemia.
 Leukaemia is a cancer of the white blood cells and people diagnosed with it usually have more white blood cells than normal. AML is a rare type of cancer and can affect people at any age but is more common in people aged over 65. 
Around 2,500 people are diagnosed with AML each year in the UK.
Normally, blood cells are made in the bone marrow in an orderly and controlled way. In people with AML this process becomes out of control and many abnormal leukaemia cells are made. These immature cells are not able to develop into normal functioning blood cells.
In AML too many early myeloid cells are made.
 In most types of AML the leukaemia cells are immature white blood cells.
The immature cells fill up the bone marrow, taking up space that’s needed to make normal blood cells. Some leukaemia cells ‘spill over’ into the blood and circulate around the body in the bloodstream. These leukaemic cells don’t mature, therefore they don't work properly. This leads to an increased risk of infection, which is a main symptom as well as others such as anaemia and bruising caused by fewer healthy red blood cells and platelets being made.
Causes of AML?
The exact cause of AML are unknown and in most cases it’s unclear why leukaemia has developed. Like other cancers AML is not infectious and cannot be passed on to other people. There are a number of factors that may increase a person’s risk of developing AML. Having a particular risk factor doesn't mean you will definitely get AML, and people without any known risk factors can still develop it. 

The known risk factors of AML are:
Exposure to radiation
Smoking ( I USED to socially smoke)
Exposure to benzene (I used to work as a cleaner, used a lot of cleaning products - contain benzene)
Cancer treatments
Blood disorders
Genetic disorders (none)
I don't know if any of these factors caused me to have cancer and it is something I will never know.

Symptoms of AML?
Most symptoms of AML are due to the effects of the leukaemia cells in the bone marrow, which leave it unable to produce enough normal blood cells.

The main symptoms are:

Looking pale and feeling tired and breathless, which is due to anaemia caused by a lack of red blood cells.
Having more infections than usual, because of a lack of healthy white blood cells.
Unusual bleeding caused by too few platelets - this may include bruising (bruises may appear without any apparent injury), heavy periods in women, bleeding gums, nosebleeds and blood spots or rashes on the skin.
Feeling generally unwell and run down.
Having a fever and sweats.
'The symptoms I had were all of the above but at the time I never thought oh I have leukaemia.' 
Other less common symptoms may be caused by a build-up of leukaemia cells in a particular area of the body. Your bones might ache, caused by the pressure from a build-up of immature cells in the bone marrow. You might also notice raised, bluish-purple areas under the skin due to leukaemia cells in the skin, or swollen gums caused by leukaemia cells in the gums.
Occasionally, a person has no symptoms and the leukaemia is discovered during a routine blood test.
Symptoms may appear over a few weeks and people often feel ill quite quickly. If you have any of the symptoms mentioned here, you should have them checked by your doctor - but please remember these are common symptoms to many illnesses. 
I don't want to scare anyone, just raise awareness :) 

Sunday, 21 April 2013

The C word

Aim for my blog:
My life completely changed when I was told I had cancer. Everyone is afraid to mention or talk about it but I feel it needs to be spoke about a lot more. Before I was diagnosed with cancer there was a lot I didn't know about and wish I had more of an idea at the time.
 My aim is to share my story and make people aware of the effects of cancer. I also want to share my experience of having cancer with others as I know how worrying and scary it is when you are first diagnosed.  I have a very positive mind and this has helped me a lot through my journey so I would love to share that positivity to make someones cancer journey a little better.

Always smiling x

 
My Journey so far...
I was diagnosed with AML (Acute Myeloid Leukaemia) on 23rd May 2012. My instant thought was OMG i'm going to die! I never had anything wrong with me before so thought I was fit as a fiddle.
 It all started in April 2012 when I started to feel really tired and down...I also had problems with my gums, I suffered a lot with ulcers and abscesses. I visited my dentist and he explained that it was continuous infections and put me on a course of antibiotics. This went on for a month or so and It wasn't until one day after a night out with the girls, I realised my gum had started to turn black and looked bruised. URUGHHHHH!
 I returned to the dentist and he sent me to a hygienist, she cleaned my gums and they didn't stop bleeding for 2 days. In this time my glands had swollen a lot and my mum insisted me book an appointment to see my doctor. She implied that I had glandular fever and told to return the next day for a blood test. I was worried about having glandular fever as my friend Kath was very ill with it. 

I had the blood test taken and my doctor phoned me that evening saying 
' I'm afraid we have worse news, you will need to get to the hospital straight away.  Would you like to know over the phone? Obviously I said yes and she replied we think you have Leukaemia'
I was so shocked and didn't take in the information properly and passed the phone to my mum casually saying 'ohh Mum it's the doctors, they think I have Leukaemia.' My mum thought I had said it wrong and got it mixed with anemia. 

 From then my life changed forever.
I packed a overnight bag, little did I know this would be my home for the next 8 months. Me, mum and dad drove up to the hospital, luckily we only live 5 minute drive away from our local hospital so we were there in no time. When we arrived I was taken into a hospital room with a bed and lots of doctors came in and told us they didn't know how aggressive the leukaemia was and that I would not be going home for a long while..when they said long I wasn't expecting months! I was told that I would need to have chemotherapy, my hair would fall out and I could possibly lose my fertility. At that point it was still a blur to me and everyone including myself were crying and still in shock. I had so many things running through my mind. 
what was chemotherapy? would I die? why me? how did i get this? what am i going to tell my friends? 
The doctors told me that my cancer was treatable and they have treated it in the past they were just unsure how high risk the cancer was. They told me that I would need three rounds of chemotherapy to clear the cancer. (That wasn't quite the case.) 

I started my first round of chemotherapy after 2 days in hospital. It made me feel horribly sick but luckily anti sick drugs worked wonders. I had lots of thoughts running through my head and one I could not stop thinking about was that my hair was going to fall out. I said to mum 'if I'm going to loose my hair, I want it cut really short first so it wouldn't be such a huge shock from going really long hair to being completely bald.'
Here is a photo of my lovely blonde locks.
 I actually had cancer when this photo was taken and didn't have a clue!
Luckily my hairdresser is also my best friends sister so she came in and cut my hair for me. At first I hated it as i thought it looked really stupid but looking back I think this was because I never cut my hair short. I didn't let it bother me too much.
  
Having chemotherapy meant that my immune system would be dampened and I was prone to catching infections. This meant I had to stay in an isolated room with a constant pressure fan, the reason for the pressure van was to destroy that any germs that came into my room by keeping the air circulating. Unfortunately this meant I could only have 4 chosen visitors that were allowed to enter my room, these special chosen four were my Mum, Nan, Dad and best friend Kate. The one thing I found hard was that I didn't have a toilet in my room and had to use a commode to go to the toilet. This was the worst part of my journey, being a 19 year old and having to use a commode to go to the loo and not having any shower facilities. I tried hard to stay positive throughout and didn't let it bother me too much. I was lucky to be allowed home for a week at a time between treatment and I spent a lot of this time with friends and family.
Family meals 
First cuddles with my Niece 
Fun with my Girls 
 I responded to the first round of chemotherapy really well and went into remission after ....this was amazing news. I was allowed home for a few weeks to let my counts recover (blood, white cells etc). Unfortunately a bombshell was dropped when I had a routine blood test and I was told that my chemotherapy wasn't as successful as they thought and the evil cancer fought it's little way back into my blood! This confirmed that I had an aggressive form of cancer. The consultants and doctors then had to think of another treatment plan for me. They came to the conclusion that having a stem cell transplant was the best option for me. It was a huge shock as me and my family were told transplant was the last option for treatment and at the time of my diagnosis my consultant said that there was a rare chance I would need one.
 I  thought that anyone could be my transplant donor but it wasn't that easy. 
When looking for a stem cell donor firstly your siblings are tested to see if they are a match. I have a brother who was 16 now 19 and a sister who was 8 now 11. They said my sister was too young but they tested my brother and Thank God he was a perfect match. Me and my family were not expecting this great news at all as doctors told us there is was only a 1 in 4 chance of a sibling being a match! They said you could have 10 children and none of them be a match so I felt extremely lucky. If he wasn't a match I would have had an unrelated donor and the success rate can vary but the process is the same. Before preparing for my transplant I had 2 final rounds of chemotherapy. 


Preparation for my transplant took a few weeks. I had lots of tests on my organs to see if I was healthy enough to have a transplant. I also had an MRI and CT scans. I was then given a very high dose of chemotherapy and total body Irradiation which totally wiped me out!  ( this killed my bone marrow completely) I had 9 minutes of TBI twice a day, for 3 days and on my final day, I had my brothers cells transfused in me to rescue me (very confusing but I will blog in detail). Next I had to stay in isolation to recover. It took a few weeks for my brothers cells to start to engraft, then it was just a waiting game to see if it worked or not.  
Now I take each day as it comes. I started off having weekly blood tests, then monthly and now I have just hit the every 3 months mark. I also have a clinic appointment every 3 months where my consultants check me over and talk about my blood test results.