Harry has been in the best spirits today than he has all week. We went to the shoe shop and his feet actually have not grown since May, but since his trainers are not fit for this winter weather we have ordered a pair as I wanted brown shoes and they are not in stock. Luckily, Harry agreed to brown too. Some proper winter shoes that are water resistant and warm fabric inside. Better to keep his feet warm, even if he does not walk that far. He does get cold and has a lovely new winter hat to keep his ears and head warm. In fact Grandad Buckley liked it so much he bought a nearly identical one to it yesterday.
We have a wheelchair arriving tomorrow, so walks out in the cold wher we come, just need to warp Harry up!
Harry enjoyed bossing Granny and Grandad around at our house today and organising them to help with his Christmas card making and later playing post offices. He has been fine on a level with family, but when his friends Evie and Leo visited he seem to become withdrawn again and wanted me to sit next to him. This is hard as I know he wants to see his friends and was excited about Evie coming, but he takes time to warm up to the new situation. By the end of the visit he was proudly showing off Harry the hedgehog application on my phone to Evie. It copies what you say so they were both shouting at the phone!!!!
Harry came with me to pick Callum up from nursery which was nice and he saw the outdoor Christmas lights lit up.
It is good to keep him in contact with his nursery I feel.
Prior to shoe shopping we did have a stressful time, as Harry's NG tube had come off its sticky place on his face and we think came out of where it should be a little bit, but don't know how much. We also have to use a syringe to check the end of the tube is positioned ok, whereby we extract some of his stomach content. But we seem to struggle getting anything out, so then he has to have a drink, wait a while and then see if the drink comes out. Only a little came out and after 2 phone calls to the community nurses they seem to be satisfied with what we were describing over the phone. However, we would have prefered that they came out, but you feel over precious. To them they deal with this all daily and for us its only been a week. They are based in Hunslett - the other side of Leeds, so that does not make access easy.
It again makes me very aware of my practice as a social worker. Whereby people have telephoned concerned about their family member and request urgent respite for example, which is very hard to get hold of at times and you go through a series of questions - producing a mini assessment in your mind as to the actual urgency and often you may say well, see how so and so is tomorrow. Having quizzed the caller and got further info or referred onto a G.P. etc you often leave it for the time being unless gauged as being urgent. But Now I really can empathise with the stress the caller must be going through, even though the assessment from the professional may be that urgent help is not actually required. I feel today that I am not a nurse and how do I know really what should be what, I may be an expert in a few months, but today we did feel lost and helpless.
I think we both feel down tonight, it is very, very hard coping with all of this and keeping up appearances, when sometimes you want to shout at everybody or curl up in a corner and bawl your eyes out, not that it will do any good really.
On the positive front Harry has not had to return overnight to hospital since coming out last Wed and that we are grateful for, although perhaps the down feeling tonight is partly due to the fact Harrry has to go back into hospital tomorrow, but hopefuly for only 2 - 3 nights.
I think the discussion today with my parents as to what to do re- Christmas, meals etc, as my sister is coming up just beforehand and Harry is likely to still be groggy from previous chemo session hit home a bit. I do think positively about Harry's outcome most of the time, but interestingly when my brother-in- law is seeing his mum on Christmas day as it may be her last, I think this could be Harry's last. But then so could it be all our lasts as nobody knows what is round the corner, so we must not give that much thought, however it is still in the back of my mind!
I had previously said it does not matter what day we have Christmas on, but when planning the logistics of family, some plan has to be made re; when to have Christmas dinner. I know it all does not really matter in the grand scheme of things, but prior to Harry's diagnosis I had envisaged this large family dinner in our new home, but Harry could not cope with any of that now. Nor could I cope with organising and cooking it. Its just that you have to give yourself time to alter your mindset and plans and get used to the alternatives. When TV and magazines all hit you in the face with Christmas and planning and decorations etc. its hard not to feel a bit flat about it this year. However, in reality who really has those glossy Christmas's. I think those that portray they do, miss out the arguments about when to put the Turkey in, or which side of the family to visit or how much time to take off work, or managing the kids Christmas holidays, I'm sure the list is endless!