Catch up 31 May 2011 at 20:31
Not been able to get online here at Poole until this evening so just catching up with our last 4 days. The move from the Oncology Unit at Southampton has been a bit of a double edged sword. It's been great to be nearer home for friends & family to visit, particularly my Mum who can now drive to see us for a few hours at a time. We're so grateful to friends who gave her lifts to and from Southampton. The downside is I've felt quite alone at times, missing the company and support of the other families that were in the unit at Southampton, you got to know them and 'cancer' was the norm there. It was also reassuring to hear them tell me that things that Charlotte was going through they had experienced and helped me to know what to expect. We're on a general ward with 6 individual rooms, all of the others changing occupants regularly as they've been admitted mainly overnight for observations etc. Therefore, everyone pretty much stays in their room and may say hello in passing in the corridor or whilst in the kitchen but thats pretty much it. One visiting Grandad chatted to me and it was my first time of telling someone outside of the unit at Southampton about Charlotte's illness and I guess its a taste of what I may have to come when we 'face the outside world again' and I have to tell people, he was very apologetic and very dismissive of his granddaughters illness. The other plus points is we have our own room with an ensuite...so no snoring dad or disturbances when staff were attending to his son. Unfortunately Charlotte has IV meds & obs at 11 which usually wakes her, & IV meds, blood taken & obs at 5am...which again usually wakes her, and as its daylight by then its hard work to get her back to sleep...very frustrating & which left me last night only getting sleep between about 11.30 & 5..zzz
Charlottes nausea & sickness has been much worse Sunday & Monday with her waking in the night and being sick as well. This seems to have put her off her food a bit now which is a bit of a concern as if she keeps losing weight they will consider a nasal gastric tube which I really don't think she will like at all. She also has a very sore throat and the entry & exit 'wounds' for her central line in her chest are very sore & swollen...all of which has given us a couple of miserable days...on top of us being in different surroundings, with on call staff covering the bank holiday weekend.
I'm glad to say I survived a rough couple of days and today has been really good. Charlotte has been up & about a lot more, we met the Specialist here at Poole and had a chat. We do have to stay in for at least another 10 days because its really important for Charlotte to really get to know all the different staff, be very familiar with her surroundings and 'used' to what she is going to go through...the time here now will help her find it easier in the future. Thankfully we were told she can go into the playroom as long as there are no other children in there who would be a risk to her as she has virtually no immune system at the moment. This is a great relief we were defintely getting 'cabin' fever being stuck in our room and very tired of pacing the corridor outside of it. I tried to explain why she couldn't go in the playroom as other poorly children might make her more poorly...she said "what will they give me lots more leukaemia?", bless her. Her blood results are starting to slowly improve by themsleves without the aid of transfusions this week, this is because the bone marrow is starting to kick in again as the leukaemia is reducing with the chemo. The little girl I know & love has been starting to show through again today, she's been a little chatterbox, playing & talking to staff and its been so lovely to see. I managed to have a couple of hours out today while Heather 'babysat' at the Hospital, it was lovely to get out in the fresh air & see a bit of the outside world.
By Sundqy evening I was so fed up & tired I started to feel angry that after a getting through a lot of tough times recently we are now going through our toughest & biggest yet and wondering why, and it doesn't seem fair. But God has his purpose for this and I have to Trust in that and try not to worry about what is to come. A father on the unit at Southampton said to me you can't count on anything that should happen, as it often doesn't, you can only really take one day at a time and said that was the best piece of advice he could give anyone. Recently, before any of this happened I talked with Clive & with my care group about strength. Particularly in view of my work position there seems a lot of uncertainty in my life, which I'm not used to, and although I trust in God that whatever happens I know we'll be ok I find it hard to transfer that to a daily basis and it doesn't seem to stop me worrying about short term things or getting 'down' about certain things. So I had started to focus a lot on the words that God will give me enough Strength to get through today...and this helped prepare me for what is happening now. I'm just hoping with 'just enough strength' he also gives me the energy and also doesn't under-estimate how much strength I need! lol Matt 6:34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own :-)
No comments:
Post a Comment