My Macmillan Angel

I wanted to write a post about my Macmillan nurse Tracy Connor she is such an inspiration I just had to share her story!  She's truly become a friend I hope I will have for the rest of my life.  For me she sums up everything a Macmillan nurse should be!  Also because I want you to know that when you donate your hard earned money to the charity and aren't sure where it goes...well I am just one example!  Macmillan fund the first two years salary for all new nurse posts, after this the NHS trust takes on this cost.

Tracy...I forgot to mention her fab hair -
I have an obsession with hair see my post about Rapunzel!

The story of how Macmillan was founded is so touching, how happy would
Douglas Macmillan be if he were alive to see its work today!

I wasn't in the best frame of mind when Tracy first walked into my hospital room and luckily she hasn't held it against me!  She was a huge support to my husband and family before I really noticed her as I was so poorly!  What I do remember was her manner, always smiling, calm and reassuring. At such a dark time it gave me and my family the confidence that the care and treatment I was having was going to save my life!  She knew the answers to every single question no matter how random and now I know her story I am so grateful to her and Macmillan.

When I recently met with her we discussed her career and she told me that she's always wanted to be a Macmillan nurse!  This to me was so heart warming as I know she was such a comfort to me and hundreds of other patients past and future!

Tracy started her nurse training at the age of 27 having had a variety of jobs including clerical, dental receptionist, mothers help and voluntary worker with heroin addicts in Hong Kong!

"I loved my training and every single area I worked on I thought 'this is what I want to specialise in'.  In the third year I worked on a ward with patients diagnosed with haematology cancers and found it really interesting and rewarding.  Thus began my passion for haematology!  Around the same time I met the retired army major who worked in the Macmillan fundraising office which I walked past most days on my from the nurses home down to the wards.  This is when I decided that I wanted to be a Macmillan Nurse!  Everything I did from thereon in was with this aim in sight!"

"Nowadays, on order to apply for a Macmillan post one has to meet the essential criteria of; 2 - 5 years experience working at a junior sisters level or above in a relevant cancer setting; have a post registration qualification in cancer; a first degree and either working towards an MSc degree or have a MSc."

"When I went for the job (16 years ago) I had worked as the ward sister of the haematology ward for 5 years; had a qualification in haematology and bone marrow transplantation.  At the time I applied you had to be working towards a first degree which I was.  Prior to being the ward sister I had been a junior staff nurse and senior staff nurse on a haematology ward, set up The Medical Day Unit and been a junior sister on the haematology ward.  I had to apply for and be interviewed for all of these posts...a lot of work!  But worth it as in my opinion I have the best job in nursing!  I feel so privileged to be able to work with people at a time when they are at their most vulnerable.  I have met so many lovely people over the years (including Anna and her family!)."

"I am now in my third year of my MSc in Mindfulness Studies and have qualified as a Mindfulness Meditation Teacher.  I am going to teach my first 8 week course to patients starting in April this year."

I have so much respect and admiration for Tracy and am so lucky to have her at my side on this cancer journey!  It also very good to hear the Macmillan put so much into recruiting the right people to become their nurses.  The charity does so much more than this but when you think of them their nurses are the first thing that springs to mind, they really are most people's first experience of Macmillan.

I will be posting more about the very diverse and wonderful work Macmillan do so please follow my blog and keep coming back!!  Also if you would like to get in touch I would love to hear from you, there is a form on my blog page!

BBC Radio Chat! I Feel Like I've Been Given A Second Chance!

This week I had my first ever live radio interview and I think it went quite well!  I've had some really positive feedback and encouraging messages!

Outside the Radio Station

We were warmly greeted on our arrival by the lady on reception and offered a hot drink...I do love a cuppa and was even more happy to have it in a BBC mug...I'm a collector of mugs amongst other things!  I didn't get to keep it though :-((

My Cuppa or Mugga really!

Reception

I sat with Mum and Dad in the reception area waiting for my slot and we could hear the live radio being broadcast so when my name was mentioned it was really strange!

When the time came I was taken through to the studio and introduced to Melvyn who welcomed me warmly and I felt more relaxed!  We'd actually met before at the Louth Run for Life where he'd interviewed me as there were over 100 people doing it in my name!  I remember him being really kind to me then, putting his arm around me as we chatted in front of the big crowd!  Thank you Melvyn for being such a gent!

Me with Melvyn at the Run for Life

Being interviewed by Melvyn

We took a selfie or 'Melfie' as he calls them in the studio and I am proud to be in one of his photos!

Our 'Melfie'

Click here to have a listen and let me know what you think!!
http://bbc.in/23Ut9O1

With BBC's Melvyn Prior

Taken from the station's Facebook Page!

Remission Quote #Leukaemia

I love being creative with words and today relapse has been dominating my thoughts so I wrote this to illustrate my feelings! 

For those of you in remission does this make sense to you? Let me know via my blog! Thanks!

Hello and Welcome!!

Thank you so much for taking the time to visit my blog, I really do appreciate you taking the time out of your hectic lives to read it!  I am currently in remission from Acute Myeloid Leukaemia which is a blood cancer!

Me feelin tough

So what happened??

This time last year I was a normal 39 year old mother, wife, daughter, sister, friend, colleague...then very suddenly I was rushed into hospital and diagnosed with Acute Myeloid Leukaemia!  Yep it was literally all in the space of 24 hours!  I had been feeling unwell for about two weeks with flu like symptoms, never in a million years did I think it was cancer.  One day I was at home, the next I was in hospital being told I had very aggressive Leukaemia, had to start chemotherapy immediately, wouldn't be going home for weeks, wouldn't be able to have anymore children, would need lots of blood transfusions, needed a heart scan due to potential damage, needed antibiotics as I had no immunity so sepsis had set in and lots more that just blew my mind!

There are many different dimensions to being a cancer fighter, before it came and tapped me on the shoulder I certainly had no idea! I have been faced with my own mortality and can no longer hide under that comfort blanket of 'it will never happen to me' anymore.  We all know there is a chance something like this could happen to us, but when it actually does it is shattering.  

There were times when my world was pretty bleak with nothing but storm clouds above me. However, I can honestly say that even after what I had to endure the sun did shine again and lots of positives have come out it.  

The pictures above were taken during my first few days in hospital...before my hair started to fall out. As you can see I was seriously ill by the time I was admitted and have since learned that only 10% of my bone marrow contained normal cells!  At one point I had 10 lines into my body, in the last picture I am receiving chemotherapy, fluids, blood, have a tube in my nose to my stomach and am connected to a heart monitor.

Why am I doing this??

I decided to write the blog several reasons, to share my personal experience as well as information and advice on what has helped me and those around me cope. I am not sure where this will take me, but will write what I feel is relevant. I am also hoping to reach out to others as well as helping to raise awareness of blood cancer and it's symptoms.  Not forgetting how it impacts on those around us, it's tough for them too, feeling utterly helpless. They didn't have the cancer or have to fight it, but can be left traumatised by what they witnessed. When I was suffering terrible pain my husband would often say that he wished to take it away. Another time he said that our house didn't feel like a home anymore.

I am hoping that doing this will help to clear my head of all the thoughts and emotions swirling around, it has dawned on me that the mental scars may still be there long after the physical damage has healed.  And finally I've dreamed of being a writer since I was very young, perhaps now it will come true!

Here I am before Cancer!

In my dark hair days

Not long before diagnosis, my usual blonde hair

During my battle!!

Trying to smile

First few days in hospital...I look awful

Exhausted

With my amazing husband

With my super brave daughter

There are lots, lots more posts to come so please keep coming back, I have lots of ideas and things to write about.

You can contact me via the form on my blog if you want to get in touch, I would love to hear from you!  Follow via Bloglovin (link on this blog) to be notified of my updates, there is also a Facebook page 'Butterfly In Leukaemia Remission'.  I would also be extremely grateful if you would help me and my cause by sharing it too.

Many thanks & much love, Butterfly xx

Sometimes a windy day is good!

So I know today most of you are fed up with this awful windy weather caused by Storm Imogen but I just had to share this!


I LOVE the feeling of the wind blowing my hair...it reminds me that it's growing back!!  It also feels longer when the wind blows it...yeah I know...strange!!


This is one of the sensations that's new to me like when I first touched my head once all my hair had fallen out!  And this will make you smile...during the summer when it was hot I used to have to wipe my head as it got sweaty!!  I've never said this out loud before so I really hope you are smiling now otherwise my total mortification at admitting this will not be worth it!


By the way my daughter is called Imogen and she's super happy to have a storm named after her!!!

Quote on Life!

I love creative writing and this is one of my quotes!  Hope you like it!!

Bloodwise - The Blood Cancer Charity

I have to admit that before I was diagnosed with Leukaemia I wasn't aware of the Charity, Bloodwise, formally known as Leukaemia and Lymphoma Research.  I am honoured to be asked by the charity to be a media ambassador and am really looking forward to doing everything I can to help raise money and awareness!

Bloodwise was founded in 1960 by the Eastwood family after they lost their daughter, Susan to Leukaemia. In those days there was not much hope for anyone diagnosed with Leukaemia however if Susan had been diagnosed today there is a 9 in 10 chance that she'd survive!  Her parents set up the charity to try to prevent any more families going through what they had to!  It's thanks to them and all the people who have donated and helped the charity that the prognosis for a lot of patients now is a lot better.

You can read the full story by clicking on this link!
https://bloodwise.org.uk/page/sylvia%E2%80%99s-story

I feel now that I have been given a second chance that I want to make it count!  

In my role as Ambassador I will be doing lots of things to help including fundraising, raising awareness, helping with future research and lots more!  I will update my blog about anything I can!

My husband is doing the London Prudential 100 for Bloodwise and we are organising a charity ball in Louth to raise funds in October this year.  He is also planning some more bike rides. My daughter is raising money at her school by selling pin badges and last year her dance school make a generous donation to the charity after I was diagnosed!  We are now quite the fundraising family!

'I felt so poorly' - Lincolnshire cancer patients talk about their experiences on World Cancer Day | Lincolnshire Echo

'I felt so poorly' - Lincolnshire cancer patients talk about their experiences on World Cancer Day | Lincolnshire Echo

My Mother's Story

I asked my Mum to put together her thoughts on my Leukaemia diagnosis and treatment as I think it will help other mothers going through a cancer journey with their child.  Although it was extremely tough for my mum to revisit it all it was also helpful for her to write it down so that she could start to deal with her feelings too!

This is what she wrote;

How does a mother react when she gets the news that her daughter has been diagnosed with Leukaemia?

The first thoughts that come to mind are;

• Shock and devastation - Have I heard right? 
• Disbelief - This can't be happening.
• Despair - On no...what if? What a nightmare, what does the future hold?
• Guilt - Is this my fault (I have had breast cancer)?
• Numbness - I don't know what to think, can't think of anything else. Can I rewind the clock and pretend this isn't happening?
• Horror - No, not my darling daughter, she didn't deserve this!
• Life in our family will never be the same!

Me & Mum not long before I was diagnosed

Before diagnosis Anna hadn't been feeling very well and one day I sent her a text message asking if she was feeling any better. The answer came back...'No...but you're my Mummy, you're supposed to make everything better'!  I felt so helpless and inadequate.  A mother's instinct rules that when your child is hurting you hurt as well and would change places if you could.  Sadly I knew this couldn't happen which just adds to the frustration!

During Anna's treatment I was so thankful that her husband was by her side as much as he was and gave her all the support she needed day and quite a few nights.  His devotion to her and her every need was amazing and heart warming to see and because of this it made the situation for me more bearable.  Each morning I would await a text update from Lee and on one occasion what he said really worried me.  Anna had 10 lines into her poor body and because of this Lee was struggling to get her to the toilet.  We rang her Macmillan nurse and she said 'Don't worry, there's nothing happening that we can't deal with'.  I was so relieved to hear this because I was extremely worried and afraid of what was going on.  Also a one to one nurse was arranged to be with Anna overnight.

It was extremely hard to say the right thing to Anna all through her treatment as she was on a very short fuse and would often snap back at me.  It wasn't her fault, she was really hurting, but this was very upsetting and I often went home in tears feeling inadequate, but I knew it wasn't the real Anna.

I felt compelled to be by her side, but dreaded the first sight of her on each visit, wishing that today she would look better than the previous visit.  Sadly, the opposite was usually the case...especially during the colitis episodes.  She was in so much pain and hearing her call out was heart wrenching.  A mother should never hear her daughter suffer so much...

I always tried to look nice when visiting Anna (I don't know why but I thought if I looked nice it would help her...silly really).  In a funny way I looked for some approval from her which on occasion I did get and that made me happy that she liked what I was wearing...daft!

Almost the worst thing was being unable to cuddle her.  We both needed it but, the possibility of transferring any infection make this impossible.  I just sat at the bottom of her bed most of the time...many times for hours on end.  Sometimes she didn't know I was there (or maybe she did?).  Very often she hardly responded to my presence and sometimes I just got a pained look (which made me think I'd done or said something wrong or she didn't want me there)!

Anna's hair had always been very long and it had been cut into a bob so that when it fell out it wouldn't be so traumatic.  She'd been in hospital for a while when she wanted it washed and brushed (it was coming out a lot by then).  After washing she sat on the side of the bed and Lee put some paper towels down on the bed beside her.  Lee and I proceeded to (try to!) comb through it without hurting her.  This was a horrendous task and as I started thoughts were coming into my head, this was the worst thing I have ever done, I can't do this, this is impossible.  At one point I thought I'm going to have to tell her it's too difficult and we'll just have to cut it off near to her scalp.  It was just like dreadlocks, I kept saying 'tell me if I'm hurting you' (which I have subsequently been told was annoying her intensely).  At one point Lee sat down for a rest but by now I was on a mission to do this for Anna so carried on.  In the end there was a pile of hair beside her but, by now she was resigned to her hair loss and didn't make any comment that I can remember.  She was so brave and I was and still am so proud of her.

Although I felt helpless most of the time there were some practical things I could do!  Getting her to eat was a struggle on quite a few occasions so to help I took sandwiches into hospital, cutting the crusts off and I also cut them into small portions which really helped her as she could eat a little at a time.  When she needed some covering for her head I walked all over Lincoln and frustratingly couldn't find anything.  The next day her dad and I went to a shop in Woodhall Spa and brought her two turbans, I was over the moon that I had managed to do something positive.  When she was at home between her treatments she was feeling low so I suggested a short walk telling her that we wouldn't go far.  This was a turning point for her and gave her a little more confidence in her body which she hadn't got at the time.

At the end of July, just as Anna was recovering in hospital after her chemo cycle I was hit by a double whammy when her father suffered an AAA.  I was in turmoil when this happened, nobody will ever understand how I felt.  My whole world came crashing down and I didn't know which way to turn, my daughter and my husband both needed me to be strong but how could I?  I felt very vulnerable, I still suffer flashbacks now and this is particularly bad in the middle of the night.  

Me, Mum and Dad not long after we'd been discharged from hospital

The Future

Since Anna has finished her chemo treatment I have watched her gradually recover her appetite, her strength (both physical and mental), including her normal day to day interaction with Imogen and Lee.

Anna has good and bad days which is to be expected and I have tried to help her cope with her anxiety with suggestions to divert her mind like her photography, blogging, craft work, Collabro, etc.

I often think to myself that the old Anna has gone and I wish we could have her back, but I know that she has gone forever; she is a changed person due to the experiences she had endured with such fortitude and bravery.  But I am devoted to the new Anna and will support her in all she wishes to do.  I still worry that she shouldn't take on too much and should pace herself and rest whenever possible.  She is an amazing person and I am proud of her, in fact I am in awe of her!!

Privileged to have such an amazing NHS team!

I feel very privileged and lucky to be able to write about the incredible team who cared for me during my life saving Leukaemia treatment.  Over the many weeks I was under their care they became so special to me, always treating me with incredible care and dignity.  At what was, without doubt, the worst time in my life I was able to put my life in their hands without question. Many times I was too ill to be in control of what was going on yet at the back of my mind I knew I could rely on them and believe me this really did help me cope.  It was obvious that most of the time they were under a lot of pressure but, not once did it affect the way they did their work.  

Me and my husband

When I arrived for each chemotherapy cycle I was greeted by smiles and 'hello Anna' really putting me at ease.  We are all on first name terms now and there is always a laugh and joke between us.  I nicknamed my registrar 'The Vampire' and have a brilliant relationship with my consultant whose called Kandee (pronounced candy) which always makes me smile as the stuff he was prescribing me was nothing like sweets!

As the Leukaemia had affected my immunity I suffered lots of infections and one time I had one in a gland in the side of my face.  Causing unending, intense pain it was only dulled by morphine which was given to me regularly by an injection.  During the night when the nurse told me I couldn't have any more I was so distressed that she sat and held me while I sobbed, a moment of kindness I will never forget. Another time I was comforted by the ward sister, who took precious time out to sit with me when my daughter had clung to me, distressed, when it was time for her to go home.

When I collapsed in the bathroom, managing to pull the emergency cord before I blacked out, they were by my side straight away.  A few times they were unable to wake me and would calmly but firmly bring me round without panicking.

I screamed at them once while suffering excruciating pain as I'd developed colitis, refusing any more treatment until it was under control.  They calmly dealt with my concerns and when I later apologised to one of them she immediately asked me to stop saying sorry.  Whenever I did refuse any intervention they always listened to my concerns, allowing me to feel in control and understand why I had to carry on.  No matter what questions I asked and whether it was to a nurse or consultant I was given an honest and comprehensive answer.

My family and friends were always made to feel welcome and treated with such courtesy.  In fact if the nurses need them to move in order to give me any treatment they would apologise even though my visitors were the ones in the way.  At a time like this allowing my family to be by my side day and night without question was a great comfort.  A bed was arranged at one point so my husband and his sisters could stay over night with me.  

Whenever patients complained, mainly due to being so ill or in pain, their medication having been delayed they listened apologised and resolved it straight away.  I remember being really impressed by this knowing how hard working and under pressure they were throughout their shift.

The other staff I am grateful to are the cleaners and health care assistants, I got to know them really well during my stay, they would chat away while working making me laugh. When you are in hospital and fighting something like Leukaemia it is little things like this that mean so much.  It's the unseen, small acts of kindness that aren't in people's job descriptions that have a positive effect on people like me.  They would often happily get ice for me for my food supplement drinks, change my bed whenever needed, get me toast at random times and much more!  In these circumstances its the little things that mean so much.

It was always evident at how much pressure they were under and sometimes when I pressed by bell it would take a while for assistance but this is not their fault.  They never took their frustrations out on me, nothing was ever too much and me, my family and friends owe them so much.

I have a check up every 8 weeks so I always pop back to the ward to say hello as they like to see me and its nice for them to see the result of all their hard work - Me looking so well!

There are so many more examples I could write about so I will have to do another post as this one it long enough!!

Torn between two Hospitals!

So I have put off writing this post for a while as I knew it would be an emotional one to face!  Life can be so tough, heartbreaking and unfair, no family knows this more than mine!  Previously my mum had survived two incidents of breast cancer, my Dad a triple heart bypass and my father-in-law had passed away from stomach cancer.  We were again reminded of this when our family endured even more distressing health scares!

On top of my Leukaemia diagnosis and the brutal treatment my family had to witness me enduring my Dad suffered an abdominal aortic aneurysm or AAA!  This is extremely dangerous, in fact his consultant has subsequently told us that he only had a 20% chance of survival and the aneurysm was the largest he'd ever dealt with!  The surgeon had never seen anything like it and was amazed and delighted at Dad's recovery.

Taken when Dad had just been discharged and before my 4th chemo cycle

On the day it happened Mum and Dad were just getting in the car to come and visit me when he'd suffered acute pain in his abdomen so he went back into the house to sit down thinking it would pass. Soon after this he collapsed, Mum had to dial 999 and is still quite traumatised by what happened next.  It was not long before a first responder arrived and started life saving treatment on their lounge floor. Initially, due to my Dad's previous heart condition, they thought it was a heart attack and Mum was asked to assist by holding the fluid they were pushing into him as his BP was very low.  The ambulance arrived shortly after this and they did an ECG which indicated that it wasn't his heart but a suspected AAA!  They stopped the fluids and immediately took him in the ambulance to the nearest A&E in Grimsby where they did an emergency CT scan confirming the AAA.  The A&E doctor told my family that it was life threatening and he might not make it to the nearest vascular unit which was in Hull.

He was rapidly transferred to Hull Royal Infirmary where a vascular surgical team were ready and waiting.  During the journey the ambulance crew were in constant contact with the team, Mum was told they didn't know if they would make it in time.  

When they arrived Dad was rushed straight into theatre and was operated on for 4 hours; after an extremely anxious wait my family was informed that he'd pulled through despite the condition he'd arrived in!  He spent 3 days in intensive care and a further two weeks in hospital.  

This is another example of how lucky we are to have the NHS and how amazing it is...this all happened on a Sunday!  The whole system worked fantastically from the first responder, ambulance crew, A&E team and radiology department in Grimsby to the surgical team on standby in Hull!  Dad had excellent care by the vascular unit in Hull and as a family we are so grateful!

All the time this was going on I was oblivious in hospital; my family had decided not to tell me straight away.  I remember feeling annoyed as I was waiting for Mum and Dad to arrive for their visit!  For me visitors were extremely important, they really helped keep my spirits up which at times were pretty low.  Lee had to sit by my bedside reading updates via text without me knowing all the time worried out of his mind!  He told me later that day once they knew Dad would pull through!

I was in shock and couldn't comprehend losing my Dad or that this could be happening, I tried to keep calm prayed we wouldn't be so unlucky.  Then suddenly all I wanted to do was get out of hospital so I could be with my Dad but...it wasn't that easy.  I was still neutropenic and even under these circumstances my consultants wouldn't put my health at risk.  

My family were torn between two hospitals having to split their time between Lincoln hospital and Hull Royal Infirmary, it was tough and they were past breaking point (these hospitals are not close to each other)!  Once I was well enough to be discharged and I was at home I sat and cried, so weak, ill and too scared to visit Dad.  However, after a few days I talked myself into going over to Hull with my Mum and Sister.  Even though I was so pleased to see Dad I spent the whole time feeling overwhelmingly anxious with a feeling of dread hanging over me.  I still had more ghastly treatment to go through and what had happened to Dad had really shaken me.  I know it meant a lot to Dad that I made it over to the hospital and I'm certainly glad I went as it was something I could do to support him and my family after they'd been at my bedside so much. For once I wasn't the patient in the bed!! 

Dad has always had such an amazingly positive attitude and even after this he said "someone is smiling down on us because I survived and you are going to be ok." I thought 'are you kidding?' but, he has a point! 

Our Family also had another cancer scare involving my nephew and at the time I was worried that, as he'd seen what I was going through, he would be really scared.  I remember telling him that his treatment wouldn't be as hard as mine hoping it would help.  I knew exactly how terrified he must have been, I'd always tried to keep my fear hidden from the children so hoped he hadn't seen through me.  Once he'd been to his consultant at Nottingham's Queens Medical Hospital and been given the all clear I remember I cried with relief as I couldn't bear the thought of him having to go through treatment.  I knew how hard it was for me, an adult and to see a child go through it must be absolutely heartbreaking.  I really feel for those parents who have or are currently going through this.

With Mum and Dad on one of my rare trips outside during my treatment!