Friday, 9 December 2011

How can you help yourself?

I've just done such a bad thing.  I thought I'd shut my eyes for a minute, and fell asleep for over an hour.  Meanwhile, childminder tried to return little boy early as she's going to see her daughter's Nativity at her school.  I didn't hear her first knock.  It was only after ten, frantic minutes I woke up.  I feel so guilty!  

He still has a childcare routine at the moment as I'm still planning to go back to work when she is more settled.  I don't know if I'm kidding myself, but we are going to try again with school in January.  I heard from them today. They've said she can do 3 days to start with, so they've planned a timetable for her.  She's dropping a school year, which will be quite tough for her.  She's missed a full year of school now though, so we've had to accept it's for the best.  She loves the academic side of school, but, because of her autism, she struggles with the social side.  I think she will thrive as she gets older and into the more academic circles of Sixth Form and uni, should she choose to go.

So, how can parents help themselves when they have a child with cancer?

I am not the best person to answer this question as I've been pretty shocking this year, and I've had some serious downs.  I've developed an anxiety problem and I've been medicated for depression.  But, there's a few things that I've learned now that might be of use to someone at an earlier stage than I currently am.

Firstly, be very kind to yourself.  This is very hard for me to do, but  have to try.  I have to forgive myself for gaining as much weight as I have; I have to keep telling myself it is because I have medicated myself and I have got through, so far.  We have to do what we can to survive.

But, I eat because I repress things.  So, if you can, talk to somebody.  I don't think this should be a partner or friend or relative.  Of course you can talk to these people, but you need to find yourself somebody who you can be completely honest with, someone who asks you the questions these people would never want to, for fear of opening the floodgates.  I have only recently found myself a lovely therapist, and I really appreciate my time with him.  I strongly recommend that anyone whose child is diagnosed does this too, whether you go through your GP and get a referral for counselling, or you source someone privately.  We were also allocated a Macmillan Social Worker, she is amazing with daughter and often has little private chats with her; I am sure if I asked, she would make time for me too.

When we are in hospital, complementary therapists often volunteer their time to giving parents little treats.  Many parents turn down this offer.  I actually found them rather wonderful, and I am very grateful to the lady who volunteers her time each Friday at LGI.  I had both Indian Head Massages and Reflexology.  These are both things I wouldn't usually bother with, but they helped me to relax at times which were very stressful indeed.  Her dad used to go for them too.  We would get quite competitive about who would go first.  Occasionally daughter had reflexology on her feet.  This also helped her to relax.  I think the message here is to try what is on offer as you might find it helpful.

Make time for your partner.  This has been so difficult this year, and I feel my poor husband has been very neglected.  He has essentially become my carer.  We have managed to sneak off for the odd meal.  At one point we were even going to go away for a weekend, but when the time came I couldn't leave daughter as she wasn't up to it.  Planning things is very difficult.  I'd love nothing more than to take my family away somewhere sunny for a fortnight but (a) daughter's cancer prohibits it (for example, she can only drink cooled boiled water, not tap water or bottled water, which makes staying hydrated from a hotel room quite tricky, let alone what happens if she gets ill abroad) and (b) we are skint.  At least we can look forward to doing something nice to celebrate once she finishes treatment.

I digress a lot.  Apologies.  I will write more later about the cans and can'ts of cancer, as it is a bit of a minefield.

Finally, parents, take care of yourself.  Eat well, sleep as well as you can, try not to become hooked again on things that might be damaging to you in order to get by, although, if you do, forgive yourself.  Nobody on Earth would want to trade places with you.  You are in the worst place and entitled to get by any way that you can.


  1. Joanne- what a wonderful, inspiring, honest blog. I am so sorry for your family and for your poor daughter and her illness. You are living every parent' worst nightmare but recording your experience will hopefully give you some clarity and will most certainly help others. You are absolutely right to be kind to yourself and if that means medicating with food- you go for it. You could be doing much worse things! When life settles down for you, you can tackle your weight if you so wish. I've had an enduring battle with weight myself over the years so I know how it can bring you down. God bless and thank you for sharing, emmaxxx

  2. Thank you so much for your lovely comment. It is nice to be no longer talking to myself! Best wishes xx