Monday 28 November 2016

Honestly & Openly how Cancer affected my Child #Leukaemia
















Smiling again
I was diagnosed with Acute Leukaemia in April 2015, it was very sudden and I was admitted to hospital one night and didn't come home after that for the best part of six months.  Obviously every situation is different, but things that helped us cope as a family may help others who have just had a cancer diagnosis.  There are bleak and overwhelming times when I felt completely hopeless and really couldn't see an end to my daughter's devastation, but now I am glad to say she has come out of the other side. Although recently when I was leaving for the hospital to have my bloods checked she was anxious to know that someone would come and get her from school if my cancer had returned, she knows enough about it to know that I would need immediate treatment as an in patient.



Visiting me in hospital

This has turned out to be a fairly long post but I would ask you to take the time to read it all if you find yourself in a similar position as I was.   This is an open and honest account of our experience, what worked and what we tried out. If I'd have found a post such as this I would have felt less anxious about my child's emotional state.

I found it hard to get help and advice as most is aimed at children who have cancer or a sibling who has cancer.  While these did help explaining what cancer is and some of the procedures they didn't give any coping strategies.  Unfortunately the NHS referral from her GP meant being passed around as funding is an issue at the moment.  I am working on some tools which I hope to publish online to share what we learnt especially from a child's point of view...from my daughter to another child who's parent is going through cancer treatment.

This is something I have actually lived through and comes from the heart, not a booklet or healthcare professional.  Of course all of these sources have their place, but I believe that nothing helps more than hearing from someone who has actually walked in your shoes.  I did listen Macmillan, looked online and read leaflets to give myself some background on where to start helping my daughter to cope.  However, I knew my child better than anyone, what would and wouldn't help us. It's was the same when she was a baby, I listened to advice but my instincts as a mother often took over.

My daughter is bright and doesn't miss and thing so I knew I wouldn't be able to hide anything from her.  The one time I did she said 'I knew you were hiding something from me Mummy.'  I found that keeping things from her just made her worry more so being honest was best and talking it through, answering her questions and reassuring her.

I have to admit that I was a bit of a coward when I first told my 8 year old about my diagnosis.  As she sat by my hospital bed I did tell her I had Leukaemia as I couldn't bring myself to say the word cancer and I knew she wouldn't know what Leukaemia was.   I'd only known myself a few days so saying it out loud seemed wrong and it was my way of gauging her reaction. She took it really well, I told her that I was very ill but the doctors were doing all they could to make me better.  It turned out later though that she hadn't wanted to cry in front of me as she didn't want to upset me.  My Macmillan nurse did tell me to be honest from the start as children worry more if they don't know the facts and pick things up from fragments of conversations, she was absolutely right.  It was only a few days later that she came back to me telling me that she knew Leukaemia was cancer.  

Through my treatment it was tough, she cried herself to sleep many times, had to stay and friends and family's houses over the weeks but still went to school and dance classes.  Keeping these things going was important so that she had normality and could forget for a short time.  There was one occasion when she was leaving the ward that she did break down and cling to me refusing to leave.  It broke my heart and I did wonder if we were doing the right thing letting her visit me, but in time she got used to it and got to know all of the staff on the ward who were brilliant at making us all feel 'at home'.

Sitting by my bedside reading to me helped Imogen feel involved and that she was helping 
Doing her homework by my hospital bed
Once I finished my treatment and had been recovering at home for a few weeks things did start to deteriorate.  She'd been so strong most of the time through my treatment that now she knew I was at home and getting better all her built up emotions came pouring out.  She didn't want to be apart from me so getting her to school was hard, she would even follow me around the house.  She needed to know where I was going and when I would be back home, sometimes being naughty which I think was to stop me going out.  If I showed attention to another child she would get really jealous, another sign of her insecurity.

Whenever an advert would come on the television relating to cancer I could see her watching me out of the corner of my eye.  Even though these adverts really distressed me I managed to hold it together in front of her.  Her reaction made me realise that it was time to face up to what might be going on in her little head.  Up to this point we'd decided to let things settle before pushing her to open up.

I started by reassuring her that it was alright for her to say whatever she was feeling.  Her reply to this was that she'd been hiding her worries because she didn't want to make me cry...my heart ached to find that she'd been trying to protect me!  Mixed emotions of pride that she was such a kind hearted girl and failure that I hadn't been able to protect her from the harsh realities of life.  My first step was reassuring her that she didn't need to worry about my feelings, that as her Mummy, I needed to help her.   I added that I too had someone to talk to about my worries.

In the beginning it did open up a can of worms and sometimes I'd be lost for words, but she seemed to accept that I didn't have all the answers, I have realised that sometimes just about it was enough.

She took a book to school so that when she was worrying about anything she could write it in the book then I would look at it and we would talk about it at home.  She also had a small white board and would write something on that if she found it too hard to say out loud...one of those things was 'I'm scared you're going to die of cancer'... that was hard to see and I had to swallow a lump in my throat!  However, this was the moment I knew she trusted me and I would be able to do what every mother wants to do...make her feel better.  Don't get me wrong there were some difficult questions to answer and some that would never have crossed my mind.

Sometimes she wrote letters, in one of them she expressed that she was worried about my legs being weak (my muscles had wasted from the chemo and months spent in hospital), it's surprising what was going on in her mind.  Also she had been scared by my PICC line and the things she seen done to me in hospital so we talked about them and why I needed them to make me better.  Another thing that bothers her is that I have my bloods checked every 8 weeks for the next 5 years...'it's just such a long time away Mummy.' she told me.

We also found that letting her get involved with our fundraising helped, it gave her something to focus on as she spent quite a bit of time planning it.  It was all her idea, I was really proud of her as she talked about me and Bloodwise in front of the whole school raising £165, it gave her a such a boost.  She's been involved in lots of things since.

With her certificate from Bloodwise

Sometimes it strikes me just how strange our life is now, how its changed beyond recognition, how surreal things are at times, how the cancer word just pops into conversation like discussing the weather or whats for tea.

Time's a great healer and things have improved...believe me at one time I was seriously worried. Like when she started sleeping with a picture of me and cry every single night I really did think we'd never get past it.  Now I want to do my best to make her life a happy one, for her to experience lots different things and encourage her to have the confidence to try even if she fails.

Life is a gift and should be lived fiercely and used wisely...

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I am putting together a 'hints and tips' sheet which I will add to my blog shortly and I have more to write but I'll have to do a separate post for that!

Friday 25 November 2016

My I Had Cancer Blog Post - Surviving Cancer


Image result for i had cancer

TeamIHadCancer's picture



I feel very privileged to be asked to write a post to be published on the I Had Cancer website based in New York! This is a website I have followed and admired for a while so when they contacted me I was more than happy to work with them.

Here is the link;

The three biggest milestones I want to celebrate


Monday 31 October 2016

When getting a cold is frightening!


Now that I am just about over this cold I've been suffering with I decided to write about my first experience of an illness since my diagnosis.  Something most people take in their stride but for me it meant the realisation that I cannot rely on my health like I used to.  Not knowing how my body would deal with this was very unsettling.

Even though I knew its very common at this time of year with the weather changing from summer to winter it was still a big reminder of my compromised health. It dragged on for two weeks and though I'm now happy that it was just a bad cold for the first week my thoughts were constantly dragged back to that fateful day in April 2015. The day I was rushed into hospital with what I thought was some sort of nasty flu actually turned out to be Acute Myeloid Leukaemia.



I tried to remember how I'd felt then compared to now but my memory kept failing...probably deep down I didn't want to relive those early days in hospital. l kept thinking 'could this really be happening again?  Yes I know it can, this has actually happened to people I know, I have no where to hide...I really am out in the open...unprotected...it got me once...it can get me again.'  

When I first started to feel unwell I knew this would be the first big test for my new immune system and chemo battered body. Not only was I worried I had relapsed but, also would I end up back in hospital because my body was unable to fight off infection.  Then I started thinking about the damage that the very toxic, high dose chemotherapy has done to my body. I know from other patients that its long term effects are life changing and it scares me to think of what might come for me.  The insecurity of not trusting your own body's ability to recover from an everyday cold was a real set back and yet another hurdle I've had to overcome.  At times my mind would wander back to when I was in hospital, sick from the chemo, exhausted from lack of food and sleep.  

Having these symptoms again meant I had to be really honest with myself, my biggest fear is that if it comes back it's more than likely a death sentence and very rapidly too.  This is the reality of AML and why it is described as one of the most deadly of the blood cancers.
 
With another cruel coincidence I started my period which had also happened last time and is a Leukaemia symptom if it is heavier than normal. I was kicking myself that I wasn't sure if it was due or not as I've not really tracked it since being in remission...I now have an app so next time I can reassure myself. This tipped me over the edge and I ended up contacting my Macmillan nurse just for reassurance that I was letting my negative thoughts get the better of me.

When I took some paracetamol I felt better meaning was running a temperature, a sign of infection and again a flashback to when I was in hospital. During treatment my temperature would be taken every 4 hours everyday, even through the night as Leukaemia severely compromises the immune system so any infection can be life threatening. If I spiked a temperature IV antibiotics were started immediately and blood samples sent to the lab.  I wasn't allowed to take paracetamol during my treatment as it could mask symptoms of an infection so when I was at home between chemo cycles the nurses really stressed not to take any.  

During my treatment so many everyday things became dangerous to me, even food (I was given a list by the nurses of foods to avoid because they carried bacteria), I became very paranoid about a lot of things.  I stopped eating, drinking and even taking the numerous medications I had was very difficult. When they'd have to put me on IV fluids because of this I would be relieved as it meant I wasn't forced to drink anything. I wouldn't touch door handles, using tissues to turn on lights and taps!  I think when these basic everyday things become the enemy it really messes with your mind and I still have the scars.

Another blow came when I was unbelievably saddened to hear that a fellow AML patient who had been in remission had passed away. He'd relapsed and the end came very quickly...there aren't words to explain how sorry I am this happened to them and as I was already feeling low and emotional it hit me hard so I cannot imagine how the family are feeling. 

So what for others is just an annoying cold for me was actually terrifying and another stark reminder that I'm in remission not cured.  A diagnosis like mine is certainly life changing and in many ways.  Thankfully it wasn't the return of the Leukaemia...this time.

I hope sharing how this felt for me helps others with similar experiences and that perhaps I will get to hear your feelings on this too?

Tuesday 6 September 2016

Remission - One Year On #Leukaemia

I decided to write this as a year has gone by and I'm still trying to make some sense of it all and I warn you this might end up rambling on!  I feel like I have lived several lives in the past year, so many changes, lots of new experiences packed into just twelve months.

It seems very apt that #BloodCancerAwareness month has coincided with the anniversary of the end of my treatment a year ago for Acute Myeloid Leukaemia.

When I left the hospital on the day when my neutrophils were finally high enough all I could think about was getting home and never having to leave it again.  Still caught in a whirlwind, in denial and waiting to wake up from the nightmare I didn't look too far ahead.  I didn't want to know anything about AML, read anyones blog or face up to the whole thing...oh how things have changed!  I never dreamed I would be working with Bloodwise, doing radio interviews, attending events, writing a blog, creating quotes, comforting other patients, etc

I have been thrown into this cancer world which I've done my best to embrace, taking a step back to breathe sometimes and at other times running headlong into it.  Mostly it has been kind to me however, I find myself using the phrase 'double edged sword' more and more.  It's a world I was so naive about even though people close to me had been through different cancers I totally underestimated the ripple effect of it and how it changes you.  Before, I winged it, like we all do, telling myself 'it won't happen to me'.  Looking back my husband and I often had conversations after hearing of someone's diagnosis ending them by saying 'you never know who is next' yet still I never dreamed it would be me.



During the many hours I spent in hospital I fantasized about when my life would get back to normal assuming this would be the case.  Well that never happened and I am coming to terms with the fact that I have to build a 'new normal'.   I know I have changed, it would be impossible to have been brought back from the brink of death without it having any affect on me.  I see things are lot clearer now, what I want to achieve and things I don't want in my life anymore.  Emotionally, while I was away from my loved ones...not even being able to hug them at times due to my compromised immunity, I cut myself off.  I've struggled to open myself up to affection again and deep down I know I do it to protect them in case I relapse and have to leave them again...possibly forever.  Even a year on I don't know if I will ever be able to fully open up and I haven't really cried that much considering, always stopping myself from really letting the emotional me back in. I really don't know how my daughter would cope as I've only just managed to put her back together again.

Making new friends has been something unexpected but absolutely wonderful, I now have some exceptional, brave, caring and like minded people in my life.  I would not know them if it wasn't for this disease.  There are some amazing people out there and going through the worst time in my life has definitely restored my faith in humanity.  I have experienced some acts of kindness that have really touched me, from the young man who helped push my wheelchair into hospital on the fateful night,  I doubt he even remembers!  Some have been so generous with money, time and gifts, this means more to me then they will ever know. 

As a child I was always writing, loved stationery and was obsessed with butterflies...was it fate that this happened to me?  Now I am writing which means using lots of stationery and while I was in hospital my mum would call me 'Butterfly'.  Next the Butterfly logo was created for me and I started calling myself 'Butterfly In Remission'.  Not only am I writing this blog but, it has given me the confidence to write original quotes about my feelings and life after my experience.  I am also planning to write a book...


Some survivors see their disease as a blessing and I can relate to that, then it hits...the Leukaemia is still lurking in the shadows!  I must be mad, unhinged, crazy right?  My reasons for relating to what some say is I've always had this need to help others and now I have something that I can really use to help others.  If I can help another person going through cancer treatment and make them feel confident and reassured then great.  On several occasions I've been contacted by people from all over the UK and abroad, offering the help and advice.  They have had nothing but praise for my blog, it's meant they've felt less along...my job is done.

Learning about my disease and blood cancer in general has reminded me of my passion for discovering new things.  Although, don't get me wrong, there has been heart stopping moments like reading the words Palliative Care amongst other scary stuff in my GP notes, finding out that AML is rapidly fatal meaning I had only days to live, what remission really means, survival statistics, etc. Overall though I have really enjoyed researching, talking to my consultant, Macmillan nurse, Bloodwise colleagues and other cancer patients about it.  For me understanding and knowing absolutely everything feels empowering and has helped me feel in control of it, I am fully aware of what might happen to me in the future.  When I was diagnosed with Leukaemia it was totally out of the blue, such a shock, with what I know now there is nothing that can happen that I am not aware of.

Even though lately the fatigue and physical weakness has been really getting me down I suppose really I've come a long way compared to where I was this time last year.  A year ago my back was sore from spending so long in one place. I couldn't be left alone so had 'baby sitters' all of the time...lately I have missed this even though it was a tough time I look back with very fond memories that I will cherish.

Right...better stop there...

Saturday 3 September 2016

#Leukaemia Flyer

There are 137 different types of blood cancer so I wouldn't be able to fit all the information about them on one flyer.  This one I have created is for Leukaemia...I am planning on creating more on other types of blood cancers.


Here is the link, click here;  Leukaemia Flyer



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...

More walking

Cousins
Waiting for the train

There is a similar picture taken of
my husband and daughter last
year which always makes me
sad so I'm happy to get this one.