Five weeks strong…

My posts have been few and far between in the last few weeks. It’s not what I wanted but sometimes you have to resign yourself to life not flowing in the direction you want to take. I’m learning that this is ok and you have to go with it for a while and hope you find a way back to your course. If not, then make the most of the direction you are traveling. Don’t get fretful about it, but embrace what you have and the people you are doing it with – it’s these people that are important and nothing else really matters.

With regards to the blog, I just haven’t been able to finish anything. Writing has been a cathartic experience and helpful in making some sense of our situation, but recently it has been difficult to find the words. I have started writing lots of different posts, but have been unable to tie them together to produce something solid to publish. But now, with the stresses and strains of the last few weeks starting to subside, my mind is feeling less like cotton wool allowing me to attempt a coherent sentence or two.

We are still in hospital having been here for almost five weeks. Our days go by in a haze of tests, observations, examinations, discussions and sometimes procedures which often carry on through the night. It’s hectic and leaves us exhausted. We are all inexplicably tired – not least Eleri. Testament to her tiredness was her taking a nap in an MRI scanner – anyone who has had an MRI knows that it ain’t quiet or peaceful. She really needs sleep to recuperate but, in hospital, that isn’t always possible.

What we have learned is that hospitals are not actually conducive with rest. I mean, they are places you come to be healed, but not to rest; home, a spa, a warm sunny beach are where you go to rest. We had a stint in the Paediatric High Dependancy Unit, where the staff work incredibly hard and take very good care of the patients, but it is busy, noisy and not at all private. This was absolutely fine when Eleri was drowsy from the anaesthetic but, as she became more alert, the hustle and bustle were over stimulating and made her anxious. We were relived when they found us a bed on a surgical ward and she was able to settle down. Hospitals are stressful and being in one for an extended period of time does nothing to bring the stress levels down. We have found the best way to deal with said stress is to get out. This has been particularly difficult for Eleri, but vitally important for the rest of us. Just walking down to the Clic Sargent house and having a sit of the sofa, can help lift some of the weight from our shoulders – especially if Owen is there to make us laugh.

Oxford has a wonderful set up where each of the bays or rooms have a sofa bed for a parent to stay; these are so much better than the reclining chairs that non-specialist hospitals usually provide. For the most part, it has been me that stays in with Eleri but Rob and my sister have also taken a night shift on occasion. If I’m honest, I struggle leaving as much and Eleri doesn’t want me to, but there are times when I have no choice. I have to leave to sleep so I can keep taking care of her.

It’s not just me that’s tired, Rob is traveling back a forth to the hospital and looking after Owen, which is also exhausting. We do have support with Owen from nursery and more importantly my wonderful Aunty Ev, but Rob still has to juggle the little man and hospital visits at the weekend. Most of the time he carries on regardless of how he feels or how much sleep he needs. Although he is only human and there are days where he is struggling to balance a toddler, traveling, washing, organising meetings, picking up equipment, cancelling plans and the reality of a very poorly child. It’s on these days I glimpse just how much this is having an impact on him and that he feels the strain like the rest of us. However, he is stoic in his commitment to getting Eleri well and without him doing the ‘admin’, I wouldn’t be able to devote all my time to being at the hospital – I wouldn’t want to be doing this with anyone else.

All that said, in the last few days Eleri has started to sleep for longer periods during the night and is awake more in the day. Surgery has been a huge success; her pain has reduced significantly, even with the removal one of the biggest bones in her body. The medics are thrilled with her progress and are impressed that she is healing so well. Now that she is in considerably less pain, she isn’t waking in agony, which in turn means I get longer stretches of sleep too. Amazing! We can’t quite believe the difference in her. It has been remarkable. I have had niggling misgivings around it being the right decision – those fears have been quashed by her recovery. There was clearly no other option.

She has recovered so well that on Saturday we started the high dose methotrexate. She has tolerated it and the doctors are hopeful that we will be allowed to go home on Wednesday. We can’t wait to get out of hospital with a daughter that is far better placed to fight her cancer without excruciating pain and agony. Going home in a better state than which she came in is all we could have asked for. The NHS superheroes have done it again!