Tuesday 8th may

Harry vomited green bile again last Wednesday, so I rand the ward to get their advice. They told me to bring him in through A and E and once their if they bleeped ward 41 they would come down and assess him. They wanted Harry to have an x ray to see if his bowel was blocked. So down to LGI again. I must admit I was in a foul mood on arrival as the nearest car park machine would not accept cards to pay and I only had change for 2 hours of parking! I had a bee in my bonnet with regards the morality of charging people for unplanned visits and in situations whereby A and E was to be the destination, as actually you have no idea how long your stay will be! On the whole most people access A and E through their own methods of transport, but if more people relied on ambulances then the cost would far exceed the gain in car parking charges! I am ranting I know, but it is things like trying to find change and deal with car parking charges when you are in a stressful situation that quite frankly can be the ones that push you over the edge. I know I am not alone as their was another very stressed out lady in A and E whom was also ranting about exactly the same thing! I remembered taking Harry to A and E in November, when he was in such a bad way and Paul came with me to assist me. We parked in an emergency bay! I think we left it their for some time, before Paul drove it home later that night when we knew we would be transferred to a ward. I have to say the visit to A and E last wednesday brought back a lot of memories and feelings of our initial visit to LGI A and E in November 2011. It seems a lifetime ago as our journey has taken such a different course since then. So on arrival at A and E we booked Harry in and went to the assessment clinic. I explained on arrival about how I'd been in touch with ward 41 and they should bleep them on arrival, but I was ignored. At least we diDn't wait long to see a triage nurse. Again, I explained that we had come following a telephone conversation with ward 41 and they should bleep them. However, again I was dismissed and told inititial assessments had to be completed first. Thinking of my car parking situation and also not wanting to be there longer than necessary I got angry and told the nurse I did not want to spend all day there, for which she replied I wouldn't and I replied of course it would be a maximum of 4 hours! So not the best of starts. I wasn't trying to take over her job and tell her what to do, but since we have been in and out of hospital for months and are well known to oncology and also known to the surgical team I was the expert with my son's situation I have to say and what was the point in wasting A and E's staff on assessments! It did astound me that despite the money put into IT systems that nobody could go on the computer and get a summary of Harry's situation. Everyone we spoke to was 'blind' to our previous history! This is so unnecessary in this day and age of technology. I know the oncology unit is building up a hefty file that will soon need it's own health and safety warning on it, for a minimum of 2 to carry it safely! However, it seems none of these notes are scanned into a computer for other professionals to see. Thus creating time delays and loss of staff time whilst inappropriate questions are asked in A and E, such as was Harry a term baby? I mean what has that got to do with him vomiting green bile following a major operation? Ranting again, but I point this situation out as I know so many people will be in the same situation, thick or multiple files in some darkened room in the hospital and in the unfortunate event that a visit to A and E is required, well those notes are in that darkened room, not where they are needed and so stupid repetitive questions are asked. I so feel for the vulnable, frail and those who have no advocate to support them. The system is like the thickest, squidgiest, sticky mud at times, that takes a lot of energy to pass through! Anyway, the long and short of it all is that Harry had an x ray and no blockage was identified, the vomiting was probably associated with his insides still settling down. Oh and we got back to the car with about 30 seconds to spare on the car parking! So enough, I hear you say, that is if you are still reading as you may have switched off literally! At least you can do that politely to a blog and not so politely when in person! The joys of technology! So that was the last time Harry vomited green bile. I think he told his insides to behave as he knew his mother would blow a gasket if another trip to A and E preempted further stupid question! Enough, i did say! So Harry has recovered well and is on amazing form to say that he is only 2 weeks post op! We had a clinic appointment last Friday with Sue Picton the oncology consultant and Mr Squires the surgical consultant also checked Harry out. He was impressed with Harry's progress and felt he was well enough to move on with the next stage. So - the Next Stage. We agreed with Sue, and yes Sue wanted to make the decision on the date of the next stage with us, which felt good! We could have promptly moved onto the next stage this week, but agreed together that next week would give Harry more time to recover, physically improve, become stronger and for his appetite to improve. So we agreed on May 16 th to be the date Harry goes back into hospital for his week of high dose chemo therapy, which targets any remaining cancerous cells in his bones and bone marrow, but in doing this it wipes his bone marrow out. So then his stem cells are put back in to enable his bone marrow to regrow. The time Harry will be in hospital is an unknown quantity, it could be as short as 3 weeks and as long as months, but the majority of people are out in about 6 weeks. Basically, Harry's immune system will be stripped to dangerous levels and only once these come up to acceptable levels can he come home. He is strong and a fighter, so fingers cross he manages well and the time is as short as possible. Harry will have be very careful for the 3 months after the stem cell transplant, as his immune system will take a while to build up and he is to avoid crowded areas. So nursery will be out! Whether he starts school when planned is up in the air too, it all depends on his immunity, his treatment etc. I think we felt somewhat relieved and elated that the tumour had been removed. As said another hurdle over. However, we were brought back down to earth with the extent of treatment left for Harry to endure over the coming months, till march 2013 at the earliest. Also, being brought back down to earth on the impact this treatment may have on Harry. Man children are hospitalised for periods in the latter phase of treatment. Basically, not to get complacent that Harry will be able to attend school regularly. however, this next few weeks is what we need to focus on. Small steps at a time! taking it all in, in one chunk is too much and makes the mind explode! So we have been busy doing things locally and seeing some of Harry's friends. Harry has Been out on his bike twice, which is fantastic! We are so keen to enable Harry to socialise with his friends and keep relationships going and also for his friends to see him. I know many of them ask questions about Harry and so it is good that they see for themselves that Harry is doing ok. So a long, long journey still ahead and if we stopped Harry's treatment here, then the cancer would just come back. He still has microscopic cells in him, which would multiply at a frightening rate if we don't press on with treatment. Harry himself understands that there is a long way to go and has said that he doesn't want his lump to return. he knows he is not better yet. We have a plan though, which I so dearly love, so onwards and upwards!