Friday 29 April 2016

Why I LOVE the NHS!!

The NHS is never out of the press these days and most of the time it's for negative reasons, but I want to stand at the top of the highest mountain and scream 'THE NHS SAVED MY LIFE, I CANNOT FAULT MY TREATMENT... THERE ARE POSITIVES ABOUT THE NHS AS WELL!!'

There are thousands of unsung heroes working within the NHS who are so caring and talented, for them saving lives is much more than a just a job.  They are passionate about medicine, people and the future of our NHS.  Most of the time they are overlooked and rarely receive any thanks, so I would like to thank each and every one of them for doing such a phenomenal job!  It's so easy to be negative and of course there are a lot of things we'd all like to improve but I am so thankful that when my life was in danger the whole system worked remarkably well. From the minute the pathologist tested my blood on 20th April 2015 and noticed my dangerously high white blood cell count, to the present day I have had fantastic treatment and support.  Whenever I have asked for information I have been given it without delay or question.

My GP, who rang me to tell me I needed to go to hospital immediately, gave me his mobile number in case we needed to contact him and dealt with what was a very difficult situation calmly and efficiently.  He has offered me unending support, helping my recovery and enabling me to slowly get my life back to some sort of normality.

My consultant has also been incredible, always putting my life first; when I was unsure as to whether I could endure a 4th cycle of chemotherapy he reassured me by taking my concerns seriously.  He took the time to contact a Professor of Haematology and Oncology to find out what the lastest information was on the current clinical trials and discuss the best way forward. Doing everything he could to help me make an informed decision. I did have the 4th cycle and now I cannot thank him enough, it was 100% the right thing to do.  I have since learnt from my own research that it gives me a much better prognosis.  It is important and comforting to be able to trust your medical team when you are being treated for something like Leukaemia.

Over the past few months I have heard from other patients who have had similar experiences to me. My Dad is one of them, while I was enduring a third cycle of chemo he suffered a AAA and we have since been told only had a 20% chance of survival!  However his life was saved by the NHS, on a Sunday.  The whole system swung into action from the first responder and ambulance crew to the vascular surgical team called to action at the hospital ?? miles away.

Another patent who also had AML and has gone to on have a stem cell transplant told me 'The NHS really kicked in for me'.

I am well aware that sometimes things go dreadfully wrong for patients and acknowledge that too but I also want to make my experience known as it deserves to be heard.  I think we all have to appreciate that rightly or wrongly every part of the NHS is under pressure and think what we as individuals can do to help.  For example, there is so much wasted medication by people in general but, I will leave my thoughts on that for another day!

Tuesday 26 April 2016

Tom Cruise to the Rescue!

Obviously when I was diagnosed with AML it didn't just affect my family; my friends were also deeply upset.  After speaking to a couple of my friends recently I decided that their stories would make a valuable addition to my blog.  So here is my first post from my friend Jane whom I've known since childhood when we met at Dance School!

In Jane's Words
Anna and I, London Southbank by The Eye (Aug '14)
One Sunday, last spring Louth and London were having a catch up phone call.  Anna and I were chatting, concerned about one of our best friends whose sibling was battling cancer. Little did we know at the time what was happening inside Anna's body!  We nattered away, Anna also let me know of her husband's charity cycle ride in London when they would be joining him for the weekend in the coming summer so I made a note of the date.  During our conversation Anna mentioned how she'd been feeling unwell recently but, hadn't been able to put her finger on what it was as it didn't seem to be anything specific.  She thought she was bit run down, overdoing things and that she was going to see her GP the next day (Monday).

The next day, via our usual WhatsApp 'old school mates' group we get a photo from Anna of her hospital room with the caption 'My view this morning'. She had been rushed into hospital the night before and was undergoing tests, we waited to hear what was wrong.  Then the news came...Leukaemia! What?! Stunned, shocked and frozen with fear for Anna and her family our group of friends were knocked for six.  We were phoning from London to Louth to Australia with our friends there ready to jump on the next plane home!  I didn't know what to say or do, so many questions, what did this mean for Anna?  I had heard of Leukaemia but hardly knew anything about it and initially I was too scared to 'Google it'.  I knew some friends had Googled it straight away and it is rare for someone our age, we had all been planning our 40th birthdays and suddenly this had hit us!

During the days, weeks and months that followed our group kept in contact with updates of Anna's condition. From visits we'd made to her husband, Lee keeping us informed.  I visited Anna on several occasions and as I write this now I have tears in my eyes having witnessed what she went through. I often hoped for a glimmer of our mate in between bouts of consciousness, willing her to pipe up with all the talk she is always so full of.  One of the toughest things for Anna in the early stages was the thought of loosing her hair.  We knew that throughout our years of growing up together how she was always 'growing her hair' it was never long enough, she always wanted it longer even when it was long!

July and the London bike ride came up, I kept the date free with the hope Anna would somehow be strong enough.  But the timing wasn't to be with her cycles of treatment so with Lee already committed to the event meaning he and their daughter would be in London.  It was also the time when her Dad had been taken into hospital so her family would be split between caring for Anna and visits to him in Hull which was a 3 hour round trip.  I offered to stay with her and 'Anna sit'.  I knew Anna would be tired most of the time but I wanted to be there for her anyway and look after her.  We called it our 'Tom Cruise' weekend as it happened to be back to back Tom Cruise films on TV, both of us being fans of Mr Cruise this was spot on for us!  Anna slept on and off and I felt comforted that she was able to rest.  Watching these films together was a very special time and I like to think Tom Cruise came to the rescue and gave us a little escapism from the harsh reality of life at the time! Why else were there back to back Cruise films on TV that particular weekend?! 

We spent some time with her Mum too as her Dad was in hospital, we took fish and chips round to her Mum's one evening, we were all so pleased when Anna ate a plate of chips!  As she's had very little appetite this was a relief to see.

November came and it was time for Anna's 40th birthday party, an emotional occasion but we celebrated in style!  Anna has come so far and looked absolutely amazing, it was wonderful to see her with her family and friends being the belle of the ball.  I am in awe of Anna's strength and bravery, her enthusiasm is admirable.  She is embracing this life changing experience and turning it around to raise awareness and offer support to other sufferers.  I am excited to hear of her new ventures and look forward to seeing them flourish.  Having known Anna since our childhood, from our involvement with the local dance school to her Dad being my Art teacher at secondary school.  I am proud to have you as my dear friend, I know that part of you is now a 'new Anna' but, you will always be 'our Anna' to me.

Love Jane xx

Our 'old school chums' at Anna's 40th birthday party!

Monday 18 April 2016

Not Always Happy Anniversary!

I have been thinking about the word 'anniversary' lately as it's coming up to the time when I was knocked sideways by Leukaemia and my life would never be the same again.  When I think of 'anniversary' to me used to represent happy events however, I've come to realise that for many, not just people like me, it is not always something to celebrate.  Often it is the day when their life was turned upside down, a diagnosis, death or life changing event.

The dictionary definition states that anniversary means 'the yearly recurrence of the date of a past event'.  We have come to think of this word as a happy one and the date something to be proud of and celebrate.

Last year on the 20th April I was rushed into hospital and given the diagnosis the next day!  This is actually my niece's birthday, she will be 10, we will all be happy on this day but, behind our smiles, I know what everyone will be thinking too.

I have been looking at photos on my mobile phone that I took near to this time and the chilling thing is that I do not look ill.  I look into the eyes of that person and feel overwhelmingly sad, the old me could not have imagined in a million years what was about to happen.  I find myself staring at these pictures in disbelief with feelings of fear and panic rising up from where I have buried them.  I don't feel like that person anymore, it's like I am looking at someone else, I cannot reach that person anymore.

I took this picture about two weeks before I was rushed into hospital!

Those who have had stem cell transplants call the day they had their procedure their re-birthday and I love this, it's a happy event!  Perhaps I need to come up with a different word as from now on a lot more 'anniversary' reminders are coming up! I have a lot of 'This time last year this happened...' moments coming up.  Remembrance day feels more appropriate as it will be a day for reflection, being thankful that I am still here but sad for what I have lost too.

As I have been writing this feelings of fear and anxiety have come flooding back!  Hopefully, it will help me process these memories and understand them so that I can continue to look forward.

Losing my old life is like a bereavement and I am still grieving for it, that person feels like a stranger to me.  It's like I have lived three lives, one before Leukaemia, one during and one after!  I have a new life now and try to be positive about what I have gained, all the great things that are happening for me, this really helps...most of the time!

This was taken on the 3rd April when Thomas from Collabro and his family popped
in for a catch up!  Collabro have been very supportive during my illness.
This was taken a month before, a girlie night away!  I cannot get my head
around it all when I look at myself here!

Tuesday 12 April 2016

Be Aware of Blood Cancer!

As part of my mission to raise awareness of the signs and symptoms of blood cancers I have created this! Please help me by sharing, many thanks!

My Very Small World!!

So we've all heard the phrase...'It's a small world' right???  Well my experience was not the usual meaning of the phrase but the fact that my world had literally become very, very small.  With Leukaemia your body's immunity is extremely compromised meaning weeks and weeks in hospital. At times I was so vulnerable that I was kept in isolation, not able to eat certain things in case I caught an infection from it.  I had to be careful not to catch any germs from anyone meaning I often didn't have physical contact even with my daughter, it was heartbreaking.  

A lot of the time my only view of the outside world was the balcony situated off the ward I was staying on.  It was only small but the nursing staff with donations from patients had tried their best to make it nice with some benches and pot plants.

  

The feeling of being trapped and going 'stir crazy' was at times unbearable having been used to be able to come and go as I pleased, my freedom is another thing that I took for granted!   I was occasionally allowed to go to the hospital shop and sit in the main reception if my neutrophil count was above a certain level, this was my only 'break' from the ward. Apart from feeling a little uncomfortable as I was in my pyjamas and dressing gown I did enjoy this little bit of freedom.  We would sit and people watch while having a drink and sometimes see people that we knew. However, at times I would become so anxious as I felt so scared, vulnerable and exhausted that I would panic and want to go back to the ward!

When I arrived back on the ward after my 'day trip' I would often joke with the Doctors and Nurses that I had missed them and decided not to escape...this time!  One of the things that I love about my medical team including my consultant, registrar and nurses is that we always manage to have some banter and laugh a lot, it's was great that they join in understanding my sense of humour!  When you are going through this hell laughing really is a good thing, it brings people together no matter what their position, background or the treatment they are enduring.  Sometimes we all find the same things funny, I would find that cracking a joke would often break the ice.

My daughter was due to perform in a Dance Show which unfortunately I missed as I was in hospital so often practised while we were out here.






Admiring the view!

Sunday 10 April 2016

I could be a Spy!?!

In case you didn't know I've had a bit of an image change...reluctantly!  I lost my long blonde locks thanks to chemo and now have short dark hair...bit of a contrast!  And yeah everyone says it suits me and why don't I keep it like this but no matter how hard I try I just cannot grow to like it (no pun intended!)

The other day I went to a funeral which was tough enough anyway and several times people who I'd seen on a regular basis before Leukaemia just looked straight through me!! I just wanted to cry and had to sit there with awful flashbacks racing through my mind, it doesn't take much to trigger them off!   Of course once I later spoke to each of them they said 'of course I can see its you now but, I wouldn't have recognised you.'   They were only being kind and not realising how much this hurts and this is by no means the first time this has happened!   You see I didn't want to change my image, I liked...no I loved my long blonde hair, I spent hours looking after it and all my life growing it!  My image change was forced upon me and yeah the chemo saved my life and I shouldn't complain but, I really miss my hair especially when people don't to see 'me'.

When I see people for the first time since I lost my hair I often feel too anxious to say hello so regularly just walk on by!  Sometimes I step in front of them faking bravado reintroducing myself!

Of course this would all be great if I was working undercover for MI5 but unfortunately its nothing as exciting as that! However, if anyone recruiting is reading I am available and looking for a new challenge!!