Saturday 22 October 2011

Both Carer and Patient

I have been thinking a lot over the last few days about being a carer and also being cared for.  As you may or may not know I am able to look at this from both sides having been a carer for my husband and also now the one being cared for as I fight Cancer. 
Granted that the illness is the same but the severity is completely different, my husband was already terminal when he was diagnosed and the time I cared for him was short and very intense, it was literally a baptism of fire, he became so ill so quickly so my role as a carer was full on from the word go.  But as soul destroying as it was to watch my husband struggle and become frail I never once wavered - I was going to be there for him every step of the way, I think if you asked any carer, there would never be a question no matter what your relationship that you will be there to see the journey through no matter the outcome.
After my husband passed away I often questioned myself - did I do well enough, was I right or wrong in the decisions I made, and mostly did I become too much the carer and not his wife and friend anymore?  It really upset me to think that I might have lost myself in the organising and the doing things to look after my husband and never stopped to take a breath and just appreciate that he was with me and the love we shared.
Its something I think I would tell anyone now who cares for someone, stop and appreciate the little things, when the person you care for has a good day revel in it and look at it as hope for what will be in the future, or for someone like me a blessing that I had this time even if I didn't get to keep it.
I remember that my husband actually told his Brother that he could not have asked for anyone better to take care of him - its something that breaks my heart, even now.

Now, two years later I struggle with wishing my husband was here to help me but also glad that he is not because I would not want him to have to cope with all this - this is the flip side, as the person who is now being looked after I find it hard - I hate putting my family and friends through this, I hate that they see me at my worst and I know how they feel because sometimes there is nothing you can do to help. 
I think any carer patient relationship has difficult elements to it, as a carer you have to be strong but you can't put aside all the feelings you have - in my case that the man I loved was going to die and I would be without him, but you have to keep it separate in a way because at the end of the day he was the one dying not me. It is a very difficult dynamic to cope with, I think I only cried once in front of my husband and I felt bad for doing it - he should not have had the added pressure of comforting me as well as coping with everything else.  This is why I think it is so important to support people that care for others in this way, the pressure and stress is immense and you need people to help and give you a break, even if its just having a gossip about silly things for five minutes.

I hope that I am not too much of a burden on my parents who are my carers at the moment, luckily I have not been too bad with my side effects so I do not need to lean on them too much - but I am glad they are both here and have each other for support. 

Carers give so much, so the only message I can send out from this entry is if you do know anyone, see if you can give a bit of support as being a carer can often be a lonely and isolated place to be.

Sunday 2 October 2011

Being Bald

I have to say, I was not sure at all about how I was going to feel about being bald.  Unfortunately with chemo its just part of the territory but I do get why for some its a big deal.  I mean your hair is part of your identity, it certainly was part of mine - I'd always pretty much had the long flowing locks thing going on so when you are told its all going to drop out it's a bit of a wrench.

I thankfully turned it in to a positive thing for me which I think helped, firstly I had it cut short which just helps you get used to it not being there but what I had cut off I donated to a charity called The Little Princess Trust, they make wigs for children who also have to deal with Cancer/Alopecia etc.  Cancer is full of battles small and large and I think where you can turn one of these into a positive thing it can only be a good for everyone.

It is odd however being bald.  My hair started to fall out about 3 weeks after my first chemo - I was literally able to pull clumps out and was starting to leave a trail around the house - I had to bite the bullet and go and have it shaved off - it was actually all part of the service, there is a shop called Pink not far from where I live and the nurses at the hospital told me about it - I had no idea it even existed! Anyway they helped me chose a wig & when my hair started to go they shaved my head for me & cut & styled my wig on the same day so I went in with hair and came out with hair - albeit detachable.

So now I have a wig and various headscarves but do occasionally wander about with a naked head - actually it makes quite good air con especially in the warm weather. 

Of course its not just the hair off your head that goes, some people lose eyebrows and lashes (not yet thankfully) and pretty much all of your other body hair...how was it put by my friends husband - ah yes, "no grass on the pitch".   I must be saving a small fortune I just naturally look like a pre-pubescent teen, no waxing required...low level maintenance, you have to love it.

So all in all its not the end of the world, my hair will grow back apparently thicker and possibly curly which will be an interesting change of pace - its probably a good thing, I had pretty much ruined my hair with constant colour changes so it will be nice to have a new crop to start on. 

Being bald for a while is actually pretty liberating....maybe you should try it?