D+21 - What About The Carer?

What about the carer?

Although I can never really know what it is like to have gone through everything D has had to face since diagnosis back at the end of April, I also went through the shock and the fears, the denial of what was happening. Nothing can ever prepare you for something like that. The speed at which it happened, information being thrown at you by the consultant warning you of the worst scenarios, the immediate admission and start of treatment does not leave you time to digest the rapidity of events. 

Cancer in general is always a shock for anyone but AML tops the chart in many ways. The first few weeks, well actually, the first month was truly awful. I became more or less "paralysed", unable to get going, cook or feed myself. I only survived thanks to our close family, a few loyal friends we are blessed to know, some members of D's family and our extended family who all fed me in turn or provided some food easy to eat without the hassle of cooking. Some of these friends and close family also offered time to be with me, to keep me company, sometimes sleep over or have a short walk with me. I am so thankful to these friends and family, you'll know who you are if you are reading this. 

Some people are well intentioned and keep saying: "let us know if you need anything" but even if asking them little things, you don't really see them again. Either they don't really mean it or are unable to offer true support. This is sad but hey, not everyone has a Samaritan soul.

Eventually, results indicated some improvement and a better prognosis and life moved on but the twirling of doing everything on my own went on. I suddenly became no 1 chief organiser ranging through cooking, cleaning, gardening, accounting, caring, coming and going to and fro between home and hospital, etc, etc...no rest for the weary, whether I wanted it or not, I just had to get on. Getting up in an empty house and returning to the same empty house day in, day out, week in, week out was not nice at all. 

As David mentioned, when he was allowed some time at home in between treatments it was so nice for me too despite having to tend and care to his needs. 

Anyway, by necessity I became expert at " sanitising" the house so well, sterilising utensils, pots and cutlery, that you could probably eat a meal on the floor without risk of infection!!! I also became expert at providing meals both at lunch times and evenings and carting it to hospital in my newly acquired battery of wide neck Thermos flasks and insulating bags. 

Don't kid yourself though, this is all extremely tiring and exhausting for the "carer". You may see someone doing well and coping well but at times I was screaming at the unfairness of it all, wishing I could just catch a plane and get a sunny warm break somewhere with D or just be able to do normal things as and when I could instead of just collapsing in a chair or in bed for short periods (and falling asleep at short notice!)

All in all, it is not just the life of the patient that goes upside down or topsy turvy but also the life of the person left to deal with everything that used to be shared before it all happened.

When the patient is finally home, it is certainly nice but unlike nurses and doctors at the hospital who, although they work long hours, have time off between their days on duty or even manage some holidays, the carer does not. It is a 150% all on your own full time job without the support of a back up team. 

Having said all this, David has only lots of praise for the Haematology teams and we are certainly blessed to live in Nottingham with a centre of excellence, the offer of the best treatments and the expertise of renowned consultants.

As for me, I certainly appreciated being able to go to the Maggie's Centre, it is not just for patients or ex patients in recovery but for anyone living or knowing someone with cancer. It is a haven of caring people who take time to listen. You can go there just for a quiet time or to join in some of the activities on offer. It became like a second home to me and I am grateful for the people I encounter there on my numerous visits.

That's it folks. End of carer chapter. I'm handing it all back to no 1 patient from now on.

May be in few months time D & I should start a family support group for carers/partners/relatives of patients going through AML specifically as this lady did http://www.leukaemiacare.org.uk/inspirational-stories/amanda-menage