12.3.14

Well, having continued with my fight for services between health and social care, which culminated in me writing a heart felt email to the deputy director of children's services last week, I have finally achieved a 1 hour service on an evening 7 days a week! It just shouldn't be that exhausting and hard to get a service that meets Harry's basic need to get into bed safely on a night. I felt I needed one last shot at getting the service I felt we needed, but realised I couldn't keep fighting as I would be ill and no help to Harry. I am aware there has to be a limit to any fight, otherwise boundaries are crossed as to how much it is worth and it can take over ones life and the very reason I started it, to give Harry and our family a better quality of life gets forfitted. However, having set myself a limit of achieving what was needed, by the end of last week, we had the answer by Thursday tea time. It's also strange how managers change their tone to you once higher management intervene! All of a sudden I could have had workers both from health and social care last Friday! 

The agency we have, have given us 2 ladies, whom are sharing the 7 days, so one is doing 3 nights and the other is doing 4 nights. I have to say that, they are lovely. In fact the first lady whom came on Monday after an introductory visit with her manager, was so helpful. I could have cried, when she offered to wash up, whilst I got my tea. She could have just gone home, after putting Harry to bed, but no she went that extra mile. This lady is being paid an unqualified rate, but her compassion goes above many of the nurses we have had, being paid a lot more than herself. The other lady, whom came last night, overwhelmed me again as she had really listened to Harry's interests and again went above her remit and brought Harry several balls of cake icing, for him to use, when baking again. 

It makes me realise that qualifications are meaningless, only in the sense of the rate of pay does it make a difference, but not in the quality of the care.

In fact we have had the best care from those, that have no nursing qualification. Don't get me wrong, we have also had a couple of really good nurses too, but their qualification, seems to make them so rigid in their remit. Though that goes through to the ethos of the department they work in, whereby their managers only see Harry being their remit, not the washing up or any other small way they can make a difference to our lives and make things easier. 

Last week, saw a decline in Harry too. He had his bloods taken last Tuesday and his red blood count was very low, 5.4. It hasn't been this low since January 2012 when Harry was on his initial chemo therapy program and when the disease was still present in his bone marrow. His platelets had deflated to 18 too having reached the dizzy heights of 100+ back in January this year. This is all indicative that the disease has spread to Harry's bone marrow, though only a bone marrow aspirate would confirm this, which is a pointless test now. Harry has previously had 6 bone marrow aspirates and it is an invasive test, which involves an anaesthetic. 

Harry underwent 2 transfusions last Wednesday, a red blood one and a platelet one. Due to the transfusions not starting till 2.30 pm, we were based on the ward and not clinic. It was strange being on the ward again. I find it hard being there, with the knowledge that Harry has relapsed. I sit there and wonder if the other parents think Harry is newly diagnosed, because he has hair. I remember using that as an indicator. 

I got talking to a parent and her son in the playroom. I was eaves dropping on her conversation with her social worker, which was underway only about 3 feet from us, so hard to ignor. I was struck how all the things she was talking about, such as trying to return to work, but life being unpredictable re her son's treatment made it difficult to plan etc. etc. it was like hearing me 18+ months ago! I realised I'm not alone in the way I think about things and we got chatting! Although when you get to the bit about swapping where on the ladder with treatment each of our children is, I find it difficult to deliver the information that Harry has relapsed, as I feel I am taking their hope away and we are the harsh reality that treatment fails. It is also hard to reiterate when asked if surgery could be undertaken  to remove Harry's tumour from his spine, that no, Harry has no lifelines left, just pain management. 

Having had the transfusions, Harry didn't perk up like hoped on Thursday and Friday, in fact he has had intermittent temperatures. Thursday night, he was saturated with sweat and I had to change his pyjama top. This is how it all began in October 2011. Though then the constant temperatures were put down to a viral infection. Back then I was crying on the phone trying to get a home visit from a GP, but was denied this. Therefore yesterday, was taken aback to see a GP on our doorstep to give Harry the once over, having spoken earlier in the day to our McMillan nurse re Harry's temperatures. I am sure the temperatures are down to the disease progressing within Harry's body and the GP could find no other cause, so we are still of that mindset. Perhaps being palliative care, has the advantage of home visits from GPs without me actually requesting one! However, back in October 2011, I would have greatly appreciated a home visit, but the general consensus of a viral infection, led to none! 

I do feel we are very much, back at the stage Harry was in October 2011. This has caused me much searching within me, to feel that we have led this life of cancer for nearly 2 1/2 years, to be back at first base, but this time to have no lifelines. To watch my beautiful Harry deteriorate so cruelly and slowly right before my eyes is so excruciatingly heartbreaking. The grief is overwhelming at times. As the weather brightens the needs of my boys are getting further apart, particularly as outdoor activities resume, the fact that Harry can't cycle, gets very cold quickly and can't enjoy the park, rules out the past times we used to enjoy as a family. As I hear and read on FB of other families enjoying the sunshine in the great outdoors and grieving as I relive the fantasies I had for us, it all becomes so hard at times. The age of the boys now, 4 and 6 are wonderful. They both have so much about them and it was an age I had felt would be perfect for the commencement of so many things. Callum can now ride his bike well without stabilises and at the beginning of January we embarked on a short ride on the spofforth - Wetherby cycle path albeit very muddy. Back then I had longed for sunshine and dry days, to complete the return journey, enjoying a picnic and play in the lovely park at Spofforth. Alas, this is never going to happen as a family of 4. This is hard to come to terms with and is part of our journey in this mine field that is grief. I say minefield, because, just as one can be laughing and joking and making the best of things, we do not know where and how the next explosion will quite hit us. 

We did make the best of the sunshine on Sunday and having a nurse with us 9-2 I decided instead of being housebound we could head to church. This was actually a really good decision and the nurse assisted Harry in Sunday school whilst I could sit in church, to half listen  to the service, but have a breather from the hectic ness of our lives! Then after the service, the nurse watched both my boys, whilst i chatted to friends and updated them. Harry was on really good form that day and as he wheeled himself down the isle to communion, I know everyone feels inspired by his determination. 

Once home, I decide that we should head to saltire and in particular Roberts park. The nurse goes home and we embark on a family outing! We queue for ice creams and hot dough nuts, then I take Callum to the park and daddy takes Harry for a walk, before we meet up again and head to the nearby bowling alley, an activity we could all participate in.

Due to Harry being in intermittent pain and being variable with how he feels, it is hard to choose activities for him to join in with. I have been researching places that are wheelchair friendly, but ultimately, Harry is really quite poorly now, that the big days out are numbered.

I think again about what I wrote in my last blogg though about parallel planning and just as the next day can be one for staying in doors, with the main focus being about keeping Harry comfortable, it can also be one where a little fun and activity can still be the order of the day. Harry made it to school this afternoon, for the first time this week. I am learning that dying has no remit, there is no ryhme or reason, but even as the end draws closer, there is still windows of opportunity for memory making. The goals change and our world becomes smaller, it is how we choose to view it that makes the difference. Just as we encounter so many negative experiences from professionals involved with us and the system itself, there are also so many lovely people involved in our lives too that make a positive difference. I had a huge smile on my face today as we are another step closer to actually being able to print a short story that Harry has composed and written with the help of Janey. Watch this space for more info on it! I actually looked up today and soaked in the beautiful sun kissed countryside we live amongst and the sight of lambs, jumping about, amongst the daffodils. I love spring!