Becoming Butterfly in Remission: August 2016

Wednesday 31 August 2016

Bloodwise Impact Day! Sharing my Story!

As part of my Bloodwise Ambassador role I was asked to talk about my experience of blood cancer. I immediately accepted even though I had never done anything like this before as I want to do what I can to help raise awareness etc. At first I didn't know what to include as I only had a 15 minute slot and so much has happened to me since my diagnosis I couldn't decide which aspect to focus on.

The way I was diagnosed and what could be learned from it and the impact of such a sudden diagnosis, the impact on my family especially my daughter and how we are dealing with it, the gruelling treatment and how it felt to spend 5 months in hospital ,living with blood cancer and how it feels to be in remission and regular hospital appointments, what I want to do with my future and how it has changed me.

Eventually I decided to give a brief summary of what had happened to me and then focus on my Ambassador role, my blog and being positive about my future. I put together some pictures to illustrate my experience and one in particular received some gasps from the audience. I also included a quote I have written to express how I feel about being in remission and was approached by John who had lost his son to Leukaemia. I was so touched and meeting him was great, they have done a lot to raise money for Bloodwise despite what they have been though. He loved my quote and asked if he could use it at an upcoming event he was speaking at. We are now in touch and I will be following his fundraising.

You can read about what they are doing here; Link to John's story

I saw this quote recently and it reminded me of him, his family, along with others I've met along the way who are so selfless and even though have been through hell still reach out to help others.

At the event I met some of the Bloodwise people who I have been corresponding with and other Ambassadors. We were able to talk about our experiences which was great for me as it was one of the first times I'd met other patients like me. One lady in particular who has been in remission from AML for 8 years really helped my as she reassured me that my feelings will fade in time. I went home feeling less alone and a lot more positive.

I found the presentations by Prof C Harrison and Alasdair Rankin really interesting and what I learnt will definitely help me understand the disease and help with the Ambassador role. Prof Harrison spoke about the genetics of the disease in a way that was easy to understand, as I had read a lot about this a lot of it made sense and my understanding improved. Alasdair Rankin who is the Director of Research spoke about what Bloodwise are currently doing and what their future plans are. I was able to chat to them, they were both very happy to answer my questions and were interested in my story.

My Bloodwise Candle with Bloodwise Information

Catriona Taylor from Bloodwise North

Cathy Gilman CEO Bloodwise

Alasdair Rankin - Director of Research

One of Alasdair Rankin's slides

Prof Christine Harrison

Diana Jupp - Director of Patient Experience

Three of the original Calendar Girls

Me chatting to the calendar girls

I was really touched when the Calendar girls who were attending asked me to join them for a chat as they were really impressed by the speech...it was the first time I had done anything like this and they have done lots of these things so I was relieved to hear this. We talked about what happened to me and I explained why I am driven to do what I am doing, their story and things they've done along the way. They are still amazed at how their story struck a chord and took off in the way that it has, to date they have raised around £4 million for Bloodwise. If they had given up and thought, as many of us do, 'what can we do? we're just a small group of people' then all that money and awareness wouldn't have been raised! We spoke about this and I told them that my feelings are that even though I can only do so much, if we all do our little bit it will add up to something really big! I had to ask them about Gary Barlow...I know, not very cool but I did. Their story has now been turned into a musical by him so they've met a few times and had nothing but good things to say about him. I am hoping to go an see the musical soon, I haven't watched the film since I was diagnosed, so far I've avoided it. When I look back to when I first watched it little did I know that one day I would be fighting the disease!

With 3 of the Calendar Girls

Talking about my experience

If you get the chance to go to one of these events next year I strongly recommend you go...maybe I will see you there next time??

Monday 29 August 2016

To grow or not to grow...that is the question! Shakespeare for Hair!!

To grow or not to grow...that is the question! So my hair started growing back a year ago and then I couldn't imagine being in a position to ask myself this. All I wanted then was hair, didn't care what colour, straight or curly...just hair.

Fast forward a year and I am now starting to ask myself whether to keep it short or grow it long like it used to be. I have a hair appointment coming up so I find myself debating whether to carry on growing it or keep it as it is!

My hair was a big part of my personality, confidence and femininity before I lost it which actually I had been totally unaware of until it happened. I was never massively confident or full of myself but my hair was the one thing I liked about my appearance. I found the hairbrush I had taken to hospital when I was first admitted, it still had my old hair in it, I felt sick as the memories flooded back.

At first my reaction was to grow it back to the length it was before, never crossing my mind that I might like it short. However, now I find myself starting to like it after months of just tolerating it, I can do different styles, use nice accessories and choose what I want to do with it. Over the years I had often looked at short styles and really loved them but, I would never have had the guts to cut my hair off...so that's a positive. Everyone has said it suits me and they prefer it to before...are they just humouring me? It dawned on me the other day, thinking about how much it has grown in the past year, that it would take about 5 years to get it to the length it was before. Not sure I have the patience for that!

I know to some people this may seem a little shallow when my health is what really matters, so what I lost my hair, small price to pay right? Yes of course but, it's not the only thing I have lost. Some I have no control over, this is something I can. I know how it feels to go out in public with 'chemo hair' or with my 'chemo hat' on and it was tough at times. People look at you differently, not in a bad way, always sympathetically but still I felt very self conscious. Often when I met people for the first time, who didn't know what had happened, I wanted to explain to them that my hair style wasn't my choice and that I didn't like it. It wasn't me...

It's a very personal thing and everyones experience will be different, I get that, this is mine. One thing that upset me the most was people I knew not recognising me, it got so bad that I didn't bother to say hello to avoid the embarrassment of blank looks. I am always honest about how I feel when writing my blog otherwise I don't see the point.

I came up with this list a while ago, the simple day to day things about hair that we take for granted yet once you've been through chemo hair loss become quite significant.

Hair milestones,
The first time...

I needed to wash my hair, after using a baby wipe to wash my head during treatment...yeah baby wipes are also head wipes
I went out without my hat on
I felt the wind moving my fluffy baby hair
I needed to dry my hair with a towel
I had to wrap a towel around my wet hair
I wore a headband and clip
I needed to visit my hairdresser
I used my hairdryer and straighteners
I needed to use a hairbrush rather than just my fingers
Used product on my hair
My daughter was brave enough to touch my hair and it was long enough to play hairdressers again

Friday 26 August 2016

Riding 100 miles in London for Bloodwise!

Back in July 2015 I had just finished another gruelling cycle of high dose chemotherapy which as a Leukaemia patient means spending around a month in hospital.

My husband had signed up for the Prudential Ride London before my shock diagnosis for the charity Children with Cancer as close friends of ours had lost their beloved son to this. At the time when he had registered we never dreamed what lay ahead, planning a family weekend in London and booking a hotel.

When the time came my husband took my daughter with his sister and family while I stayed at home with a friend looking after me. I remember speaking to him after he'd finished and he sounded really flat as I wasn't there to meet him. We were both really emotional but neither cried probably not wanting to upset the other!

So fast forward through the most traumatic year of our lives to the Prudential London 100 2016 and here we are together as a family. I think we are still a little shell shocked from it all as my diagnosis was so sudden and I'd only been unwell for a couple of weeks.

We went to the Excel centre the day before to register where we listened to Sir Chris Hoy chatting about cycling and had the opportunity to meet him at the end.

Meeting Cycling legend Sir Chris Hoy

While waiting for my husband on the Mall, there was a great atmosphere with a DJ playing brilliant tunes! I had a great time dancing around embarrassing my daughter and nephew, it struck me that I can probably count on one hand the amount of times I've felt relaxed and really laughed since my diagnosis. I find myself holding back my emotions...not daring to be happy again in case I relapse, I cannot let myself believe that I will truly be ok. Everything gets so serious and you get used to seeing everyday as a struggle.

We were approached by a French lady as she saw my daughters Bloodwise t-shirt and although she didn't speak much English she was able to communicate that she understood what it meant and had been touched by blood cancer.

The trusty steed!

Outside Buckingham Palace after completing the Ride London

When we at Buckingham Palace another cyclist came up to us as he's spotted our Bloodwise tops and told us he does triathlons etc for Bloodwise, it was lovely to chat to him. Although I saw lots of Bloodwise riders while waiting on the Mall we didn't see anymore after this and unfortunately we were unable to go to the after party. Next year we will definately be going as we'd love to meet others who've been through what we have.

Very important to check your Strava after a big ride!

Later on once my husband had recovered and we'd had something to eat we were in Leicester Square with my family when my daughter was approached by a man who it turned out had lost a close friend to blood cancer. He'd noticed that she was wearing a Bloodwise t-shirt and wanted to say thank you, it was heartwarming to be able to share stories and even though his wasn't a positive one I am glad we were able to tell him that we are doing all we can to beat blood cancer.

My husband was really happy with his time and will be signing up for next year, since he's done it several of his cycling buddies have told us they want to sign up for next year and will be cycling for Bloodwise too! Words cannot express how much this means to me.

Tuesday 9 August 2016

Testing my stamina being a Tourist #lifeaftercancer

Last weekend we visited London which was a bit of a milestone for us. This time last year I was still enduring the brutal AML treatment making me so weak I wasn't allowed to climb my stairs without a chaperone! Sadly my Husband and Daughter had to make the trip without me. This trip was the first time I had really tested my stamina since finishing treatment and it failed after day one! Since my diagnosis I've developed this need to be near home where I feel safe so haven't ventured far. The thought of travelling abroad fills me with sheer panic, yes it seems irrational but that's me!

These feet have walked miles and miles

The main reason for our trip was for my husband to take part in the Prudential London 100 riding for Bloodwise, he raised £700. When he finished last year there was no one there to cheer him on or meet him at the end, at the time I asked him how it felt to finish such a great ride and he replied 'it's a bit of an anticlimax as I'm all alone...' I will write a separate post about the London ride and all the good things that came out of it.

On our train journey we met and got talking to a lady about everything that's happened, she was really interested and asked lots of questions about blood cancer and Bloodwise. The conversation started when she asked why we were travelling to London and just developed naturally, people are usually really interested which is always heart warming.

I love London, the history, culture and buzz...normally but this was my first time since being ill and I did find it overwhelmingly tiring very quickly. I enjoyed our time so don't get me wrong it was just hard for me to at times...I was on a rollercoaster of emotions. From being on a high at coming so far to fighting back tears of frustration at still being so physically and emotionally drained. With flashbacks from the most random triggers to wanting to run and jump for joy as I had spent months trapped in hospital craving the outside world. Memories of how dejected I felt when I had lost total confidence in my own body, that awful feeling of being out of breath at the smallest activity. Buried feelings of panic and fear began to rise up.

While we were walking on the Mall I saw a young woman on crutches with no hair, I assume from some sort of cancer treatment, slowing making her way along, immediately my mind went back to when I was so weak I couldn't go to the bathroom unaided or get out of bed. A picture flashed into my mind of me laid on the settee looking like a skeleton. I really hope things get better for her soon whoever she was.

My Aunt, Uncle and Cousins made the trip in to meet with us which was lovely, my illness has meant that we have seen a lot more of each other. My Aunt and I talked about what I am doing with my life now and it was lovely to hear how proud of me she is and how she admires the way I have turned this awful experience into something positive. This is always lovely to hear and I'm always interested to hear how I come across to others taking note of any points they make.

Ma Famille Selfie!

The whole weekend was a reminder that even though I have come a long way I still have a lot more recovering to do, my energy levels are so low it's ridiculous after one day, this was a three day trip. Where most people revived after a good night's sleep my legs still felt like lead and part of me just wanted to give up and surrender to the black cloud of hopelessness that follows so close to me most of the time. I have no idea where I found the strength not to have a complete melt down at times when going up and down steps in the tube, walking the busy streets and thoughts flying around in my mind.

Another problem is the mental fatigue, my inability at times to process information and think clearly. Sometimes this is hard for those around me to understand as I am normally pretty switched on and they have been used to me being in control. I have to keep reminding them why sometimes I need to be led and not be the leader. This is where adjusting to the 'new you' comes in...for you and your husband, family and friends. When you finish your treatment and have hair again it is easy for them to relax back into the old relationship dynamics...I am going to write a separate post on this!

So this little trip is another step in my recovery, another little milestone to celebrate...I did it even though it was tough, guess it also means yet again I have proved to myself how strong I can be! It was a weekend of mixed emotions, quality time with my loving family therefore feeling emotional and happy yet at the same time worrying that I will ever 'get over this'. We are going to visit again next year so it will be interesting to see how I feel then...