Sometimes the intensity of events we experience in life leave you short of breath. This has happened to me more than once this year.... I found it hard to write during the second half of the week in hospital. The events of the week, the feeling on the ward, the conversations I had with people all left me feeling winded. Caution - proceed carefully here! If you dont want to read the reality of what cancer does to people stop here! I said very early on in our journey and keeping this blog that I would write about what its like living through the experience and how hard it really is at times. Its not always happy smiley icons and ticks....... Haise and I had a tough week. Chemo continued as the days went on. Haise was sick the last 2 days. Didnt eat or drink for 3 days. Always very concerning for a mother. We shared the room the second half of the week with a family who were tricky. Their body clocks didnt seem to work well with ours....they were up having toast and conversations at 2 in the morning. There is an unspoken etiquette in sharing a room in hospital, these people seemed oblivious in how to share! So frustrating. I guess I was disappointed in many ways. Again I think my expectation is clearly not in line with real life... sadly.... when we arrived the girls up in clinic seemed to indicate that there would be a cake and a mini celebration for H getting to this point when we were down on the ward. This didnt happen. Only our favourite nurses asked were we getting close to finishing. This didnt seem to bother my very logical son, but it did me. He told me Mum the nurses just know what chemo kids are in for and they do their job. Hes right. The sheer volume of children I guess totally prevents nurses from knowing where children are up too. That in itself is sad, way too many children. On Friday evening H started to complain of pain in his hip and leg. This went from just a comment about his leg feeling funny to full blown tears and the need for pain relief. It seems that his muscles have seized up on him from being in bed for the week and not being up and about. He couldnt move his leg without being sent through the roof with pain. He of course got a HUGE fright and left us both feeling very, very unsettled for the evening. The lovely nurse Heather who was looking after us on Friday provided much reassurance and heat packs. The Registrar came and inspected Hs leg. All were of the opinion that he was having cramps and spasms in his leg. I was on the phone to my Dear Chris for support, love you Chris. Over the course of the evening things settled a little. However H is still having to move about very gently. He has regained some movement over the previous 24 hours now that we have left hospital and he is out of a bed. He was not even able to bend his leg on Friday night his muscles seemed to have got that tight. My goodness me.......talk about another stab in the heart for his mother watching him struggle. He is this morning moving about better again so I am sure he just needs to keep moving. And see Chris!!! Again, I think my expectation of a physio seeing him in hospital must be unrealistic as we have not seen a physio since July. Am I wrong in thinking this is wrong? I dont think so...... Haise spent a week in a bed tucked behind a curtain. I kept him tucked behind the curtain to protect him from all the other hideousness going on in the ward. It never ceases to amaze me how completely surreal life in the ward is. It is like a parallel world. Families are trying to live in that ward for periods of time and we are all having to manage and process the events that occur around us. There was a little girl who was very sick, very very sick, who passed away during the week. This was in a room just opposite ours. The grief was overwhelming. So many people everywhere, family members, friends..... I watched other families trying to go about their business with this all unfolding around them. I found it hard as I always do when we have been on the ward and this happens but this time I found it very hard. There were parents and family members of the other children on the ward who were clearly moved and there was a terrible sadness that didnt lift. I met another fabulous Mum whose son is so sick words fail me to adequately explain to you what they are facing. I caught up with a couple of my ward Mum friends who are lovely and still managing such traumatic situations with their children. Big fat sigh. Then the icing on the cake was this event - we had to wait until about midday yesterday for Harrison to be unhooked from fluids and receive his GCSF injection. We were all ready for this to happen and then leave. I heard his voice before I saw him, Doctor Kellie. That mans voice gives me shivers, I automatically prickle when I hear him. Yesterday reminded me why I asked to be moved to Luces care. Doctor Kellie amongst other things things told me to keep on top of Harrisons needs for scans as he will fall off the radar as we are not a local family. He told me to keep an eye on the lymph nodes in Hs groin which were enlarged at diagnosis...... he went on and on. Needless to say I kept it together until it was time to go. Then I burst into tears. I know Dr Kellie has a very impersonal manner but yesterday was too, too much. Thank goodness our favourite nurse was team leader yesterday, Fiona heard all of this as she was on rounds with him. She provided reassurance and hugs. I was shell shocked. The conversation was obviously more than what I have written about. It was just a terrible terrible way to finish up at Camperdown. I know Doctors have to develop their own mechanisms for dealing with the nature of their work. But man alive, can I tell you .... too much. I wrote an email to Luce and sent it last night to give my head a rest from rehashing the conversation. I know Harrison wont fall off the radar....our fabulous Outreach nursing team wouldnt let it happen, Luce wouldnt let it happen. Phill and I wouldnt let it happen. We have been through too much this year to let anything fall off the radar. So we are home. I am exhausted. My brain has no room at the moment. Harrison is exhausted. He now starts the process of getting through the effects of IE treatment. Next week will see us at Canberra Hospital every day. I imagine Red Cells and platelets will be on the agenda throughout the week. Harrison now has to work on physio and getting his leg moving. We have an appointment with Dr Stalley on December 17th. I wish I could be more upbeat for you peeps. Its been hard and I dont feel like I will recover from this winded feeling anytime soon. I am grateful we dont have hospital admissions anymore, I am grateful Harrisons are complete. I am though feeling the pain of all the Mums I know and care about whose childrens treatment are no where near the point we are. There is no sense to be made from these situations. I know its about accepting it and then dealing with it. I think I have done this very well all year but sometimes I just dont want to accept that children and families have to endure what they do. I think my intense post this morning really reflects the intensity of the week Harrison and I have just experienced. I hope as they hours today pass and I realign with my family these intense feelings will subside a little. I long for days where my heart feels light and I dont feel like I have the worries of the world on my shoulders. I hope those days arent far away. Em xx
Posted on: Sat, 29 Nov 2014 21:56:27 +0000
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