Butterfly Anna
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From My Mum's point of view

Butterfly Anna
Posted by
15 Jul 2016

I asked my Mum to write about how it felt to see her daughter battle Leukaemia
This is in her words

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!!


Eleanor Baggley

Anna, thank you so much for sharing this from your mum. It's a fantastic blog and really demonstrates the huge affect a diagnosis can have on the whole family. It's wonderful that you've had such a supportive person with you throughout your experience. All the best to you both, Eleanor


Thank you!