Friday, 31 January 2014


Yesterday, felt like a very bad day. It commenced with a phone call from a charity that provide bicycles to children whom have had or have cancer. We had made an application and yesterday we got the call that the application had been processed, but I had to explain that currently it needs to put on hold as there is no way Harry can ride a bike at the moment. The charity do adapted bikes, but currently we need to see if Harry is going to regain any feeling back in his legs.
Suddenly everything hit me in the face yesterday. Having to admit that Harry isn't going to ride a bike again in the near future made me feel so very sad. Only days ago Harry was very proficient on his bike and was looking forward to bike club restarting in march.
We also had a demonstration from the stair climbing company. An interesting piece of equipment. It will be slow and cumbersome to get Harry up and down the stairs, but it will protect our backs from lifting him. We are going to get training on this gadget next week and hope there is one in stock for us to have and learn to use. I guess, accepting such equipment again, is hard to comprehend how in such a short space of time things have changed so very dramatically. 
Suddenly our home is being filled with equipment and their is an expectation that if Harry can't get up the stairs, that our living room should be given up for his bedroom. The same living room,which last   summer we put a lot of labour of love into transforming into a cosy and comfortable space for us to chill out in. 
I am again hit by a reality whom many people have faced during my professional life as a social worker. I've been the one assessing and in conjunction with the occupational therapist discussed turning communal spaces into bedrooms and littering the place with equipment. 
Now I am on the receiving end and I have a much greater understanding of the adjustments one has to go through mentally in accepting all of this. Physical changes to the home and equipment means there is no denial of the situation and few places to hide from the fact that a once able bodied person has come to need such aids to try and remain as independent and included within the family environment as possible. 
Currently we don't need to convert our living room into a bedroom as Harry is just about manageable to lift upstairs. This creates continued normality for Harry on being able to enjoy his own bedroom and belongings around him. Although his beloved mid height bed is going to have to be shortened and turned into a normal height bed, as it is too difficult to continue to transfer him into this height of bed. 
We continue to adjust to this new situation.
Harry has been quite unsettled this week in the night and thus tired and teary at many times in the day this week. He's been on a steroid and apparently restlessness can be a side effect. He has had his last dose today, so I hope he has a more comfortable night tonight, we so need it. 
Harry struggles to change his position too on a night due to paralysis, so needs help with this. Neither can he access a drink on his own. 
Our night time regime is time consuming as Harry cannot open his bowels without the aid of medication and some assistance and thus can mean him spending quite a while on his wheelie commode, hoping gravity helps too. This  is because he has lost control of his bowel muscles due to paralysis. Bath time takes 2 of us too, to make sure one of us remains hold of Harry to prevent him falling backwards in the bath. We have been promised a delivery of a raised bathing seat next week, so thus should help. 
Harry has been borrowing his friend's wheelchair, which has given Him such independence. The wheels are his legs, however the height isn't quite right to get a banana board (plastic board for Harry to slide on to aid transfers) across. He really needs assessing by wheelchair service to see if a more appropriate chair is available, plus we can't get pressure relieving cushions for a child's wheelchair without wheelchair services ordering these. We have been waiting over a week and our Occupational Therapist says they are given the 'short staffed' line re no appt. yet. So I kick ass today and ring wheelchair services myself, the result is an appt. next Tuesday, 9 am in Sescroft. Not ideal timing and location, but we'll take it thank you.
You see I have become obsessed about checking Harry's skin for red patches as he spends so long in one position, sat on his bottom. Without appropriate pressure relieving cushions there is a greater chance that his skin will break down and ulcers will appear. Life is hard enough without more to contend with. 
We are staying once again at Martin house hospice. This time for a planned stay. It should be 4 of us, but Callum, whom is never poorly, has been struck down by a sickness bug. It never rains but pours! Hopefully he and daddy can join us later tomorrow. Again plans have to be adapted as Paul and I were going to head out for lunch tomorrow, whilst the boys were occupied here. Hopefully we can have some time out together on Sunday.
I think we need some chill out time together as the last week plus has been quite traumatic. We need to regroup and move on. 
I came to martin house today with Harry as he was being reviewed by the palliative care and oncology consultants. It seems that they had hoped Harry would have had some sensation back In His legs by now, but he has none. They fear the spinal chord could be damaged and it is beyond self repair even if the tumour has shrink to alleviate pressure on it. However, time will tell. They have no plans to give him more radiotherapy as of yet anyhow.
The sensible part of me, is aware that Harry's paralysis prevents him from Feeling the pain that could be there from the existing cancer in his leg and pelvis. I am also aware that there is widespread disease in Harry's spine and if he regained his mobility, walking could be painful and bent due to this.
Today Harry has been happy, he has enjoyed school, attending for 3/4 of a day. He is happy to be at Martin house and we very quickly ended up in the art room making a terminal building for the airport he started last week. Harry has been very charismatic this  evening and Loved the banter with the staff. 
Harry is currently comfortable and pain free. That has become our main focus and priority. Let's face it, a cheerful, happy Harry makes us all smile with him. 

1 comment:

  1. Happy and cheerful is all we want for our kids when times are tough. You too deserve to be happy and cheerful but I know that this is impossible at this time. Take all the practical help around you to give you the energy needed to enjoy your time with Harry. Help is here if you need it- practical or otherwise. You're an amazing person doing what no one should be faced with doing but also doing exactly what I would do if ever faced with this god awful situation you know what I mean when I say that. Thoughts are with you as always x