Harry was discharged home Sunday. He was disconnected from all machines in the morning and once he had woken up and come round, he was racing round his room like a loony tune! We were awaiting the doctor to review Harry as only the night before, the discharge date was going to be Monday. Since Harry presented so well he was allowed to go home in the afternoon. This was great news. My parents had visited with Callum, as I wasn't sure when discharge would be. Callum had a great time racing around the ward and proposition a bemused doctor with a petrol pump, which he decided was a joker soaker. With relief i packed Harry's room up, including all the decorations he had made and we get home around 4, just as CAllum comes home from creepy crawley party, one where there are insects, spiders, reptiles and rabbits to touch. He had a fabulous time. Both boys giddy, i unpack, which is always very time conuming, whilst my parents stay and entertain the boys. Paul is working and has managed to complete all his shifts, whilst Harry has been in hospital, which has meant I have done all the time in hospital this episode.
Hopsital was hard, dealing with all the side effects Harry had from the drugs. The pain was hard for Harry to endure at times, as it was for me to watch. However, with a hospital team around us, our private room as well, hospital in many ways wasn't so bad and i just try and get on with it and focus on Harry.
However, being at home is soooooo much harder. The fantasy is, that it is all roses, happiness and fun. The reality is that as Paul carries on with the rest of his set of 7 shifts, I'm the main one dealing with the aftermath of a hospital stay. This leaves Harry in the centre of attention mode, very demanding, it leaves Callum demanding for my attention as he has hardly seen me too. I want to scream get me out of here and there is a competition as to who can have the loudest tantrum, me included, not very good parenting I know, but perhaps come Monday, the week of sleepless nights, the worry and stress of managing Harry's side effects, the fact that Harry never started on a particular pain killer prior to his treatment called gabapentin, that he should have done, angers me, as i begin to reflect on the past week of events. Harry was so well prior to this admission, he was rocking on life! As said, Sunday he was running around like a loony, but i think he exhausted himself. He is also having a come down from morphine, which can give you mood swings. He is fatigued from the treatment, still having slight intermittant pain in his joints. He cries at the drop of a hat when things don't go right for him, its exhausting. On Monday I was thankful we had a nurse coming for a couple of hours in the afternoon to look after Harry. He was so exhausted come Monday lunchtime, so tearful, screaming about everything, but I managed to get him to go back to bed and he fell asleep. This enabled me to take Callum out to the park, whilst the nurse sat with Harry. This was lovely to have time just with Callum. Harry was in a better mood when I arrived back fortunately. At 6.15pm, the boys were actually playing nicely together, but bedtime alas! However, tears returned for Harry as bathtime ended and Harry was clearly exhausted again.
We never saw Harry's consultant last week, not sure if she was off, so I never got the chance to pursue the fact Harry was missed on getting the gabapentin, prior to treatment. I discussed it with another doctor, junior to our consultant and he thought that Harry should have been on it a week prior to the commencement of the immunotherapy. The charge nurses I felt was trying to cover up and said well sometimes they are started on it and sometimes they are not. I think again Harry has just been forgotten, like when the retests were rushed through prior to radiotherapy. I am now following up this fundamental flaw. We will never know how much the drug would have limited Harry's pain, he didn't start it until the Wednesday and then doses are built up, so the effects of this drug not really felt this time, but he is renaining on it until March, so it can't be forgotten! I think on reflection I feel angry that Harry probably went through greater pain than need be. This upsets me too. I think in general this week my emotions are all over the place. Possible also due to the fact I now realise that this immunotherapy can never be given as a day patient, as the ammount of infusions through Harry's port are too great, plus the morphine infusion too. The treatment can only be managed through a hospital stay. I had been told that perhaps, Harry could have the treatemennt as an outpatient later on, if the side effects were more minimal. I think the information I was being told was for the drug that Harry was put in for, but the computer said no, that would have been an injection and that could have been administered as a day patient after the first couple of sets of treatment. Maybe I got the info mixed up? Anyway, the implications are that every 4 th week, till March Harry will be hospitalised. This therefore has a real impact on my ideal to return to work. Couple this, with the fact I am only getting Harry into school for a few hours a day, I have no childcare anyhow to be able to work. Harry should be well enough to go to school much of next week and I have pushed for the school to be signed off giving Harry his medicines tomorrow, yay, but no yay on the other hand. I will explain. Prior to this hospital stay Harry was on 1 medication at lunch time, so the school knew this, but as always with a hospital stay Harry has come home with more medicine to take! His magnesium levels are low, so he is back on this 3 times a day, then there is the gabapentin, this is 3 x day too and it needs to be kept in a fridge. Well on discussion with the community nurse, she says the school will only administer 1. Well I blow my top, what difference does it make giving all 3!!!!!!! After much discussion, I conclude that the magnesium could be given after school, as long as the 3 doses are got in, it does not matter so much on the spacing out of this. The gabapentin, needs to be evenly spaced though, but the nurse is adamant on the softly, softly approach, where i am always a lets go straight in there kind of person! Anyway, since Harry is unlikley next week to start school till 10.15 am, I agree to give the gabapentine after school too, however, this is because there is only next week then its half term, then Harry is in hospital for a week, so by the time he returns mid November, I then want the nurses to push Harry having the gabapentine, as I am hoping he may start school sometimes at 9! The medication the school will give is needed 4 x day, so definately needs to be given at lunch time. The nurses did query this one, but when I asked how do I fit 4 x day in, if lunch time is missed, there was no answer! So nothing is easy as always.
The other thing is that Harry doesn't want to go to school now, as he has missed it for a period and going in again, means resettling. I am sure he'll like it when he gets there!
So this week I feel an emotional wreck, tearful at times, as i come to terms with being unlikley to realisticly get back to work until March next year, though I am still thinking of other child care avenues. I feel I have lost my identity, lost my self esteem, lost myself really. Maybe the past year is taking its toll as we keep trying to plough on. And it is a year. 10.10.11 is the day Harry's leg pain kicked in, I dismissed it as cramp! The sleepless nights set in with avengence then and we have not had many nights in the past year that we have not had an undisturbed night. If Harry actually sleeps well, then you can bet his feed machine beeps for some reason. Like last night, Paul was working nights, I want an early night, but sadly disturbed at 11.45pm by a beeping feed machine. It took me 30 minutes to sort out, having tried all the usual techniques, I had finally put a new feeding tube on, which sorted it. However, though exhausted I had an array of strange dreams, so woke up none the less benefitted sadly and my temper and tolerence is much shortened! Though again this afternoon, I had a nurse provide a couple of hours respite and I met a freind for coffee, Callum was in nursery. This was lovely, but the house is in a tip and paperwork, which only Paul and I can deal with is gradually becoming probably the best centre for a bonfire, we just need a Guy!
I think extreme fatigue is to blame, but again loss of my fantasy of working and creating some normality for another few months. In my heart i guess I know work is unlikley, but I find it hard to be a stay at home mum and need distraction. I know emotionally I am not at a point currently of being fit for work. I keep thinking it will get easier, but each treatment has its own set of rules and we have to try and adapt to them and the way they knock Harry each time. I do also find myself wandering what life will hold for us at the end of this. It could be likley that Harry still needs regular transfusions of red blood or platelets for months following the so called end. Plus the regular 3 monthy retests. I guess as the end nears and thoughts progress to life beyond the hospital and that one should return to work and life resumes, then that also scares me. Although I want to resume to 'normaility' I am not the same person I was, you can't be. As much as I don't want to dwell on Harry's cancer journey for the rest of our lives, nor do I want people to be dismissive of the journey that rocked our boat and turned our world upside down. I find that hard now, for example I said to someone that I never thought Harry would start school and the response was, well he has and he is here now,end of! As much as there is a time and place for dwelling on the past, I find this hard, as to gloss over the last year, as if the journey has not happened, to me is to deny the fight Harry and ourselves have gone through and made Harry the boy he is today.
We have started back on Harry's retinoic aid, which is in tablet form and has to be taken morning and eveing for 14 days. I don't think I have gone into the administration of this before, but apologise if I have. Harry had 3 tablets to take initially each twice a day, but as he has thankfully gained weight, he now has 4 tablets to take morning and evening. Since swallowing these tablets about the size of an olive oil capsule is not an option, the original plan was as told by the pharmacist, was to cut the top off the tablet, squeeze the contents out into yoghurt, stir and voila, Harry swallows the mixture. However, the first administration of this back in September was up there in comedy classics! I had rubber gloves on, which is a must to protect my skin, the centre which is jelly and not oil is very hard to extract, getting a skewer I try and scrape the contents out, but most ends up on my glove and the slippery tablet the other side of the room! There I am worrying that if I can't get the content out, then Harrys cancer will just come back, I am also worrying how long the contects is exposed to light, as this slowly weakens the effectiveness of the drug! I therefore abandon the job after the first tablet and yes, despite being told children won't swallow these tablets, I say to Harry he has to swallow it!!!! So i put the tablet in his mouth, with yoghurt and tell him to drink is juice! He won't swallow it and he is in tears, I am as said worried about the whole affair and his cancer returning. However, we have a break through, Harry cracks the tablet with his teeth, gets the content out with his tonge, I spoon yoghurt into his mouth, he then spits the shell out, Voila! Job done and he repeats that step with each tablet, cracking them with his teeth and spitting the empty shell out. Harry is such a good lad at times, it save me having one nervous breakdown anyhow!!!! It also means Harry is getting the entire content of the drug and I feel more relaxed, that we are doing everythinng to prevent his cancer returning!
On reflecting the past week of events, I also reflect on the many doctors we come across. I could write a dissertation on the rightful treatment of patients and that they are people and not just a figure to be treated! Doctors need a new module in their training, how to be empathetic, respectful and person centered! We do have the lovely Kevin, who is a top oncology doctor, who I hope makes a consultant one day. He has all the right qualities. He talks to Harry, includes him in the consultation, asks him where the pain is, he also remembers and knows Harry's history! The junior doctors who have just started in August have soooooo much to learn. I have probably said this before too, but I question whether some have been dragged off the street, as their knowledge appears to be minimal. The doctor who saw Harry at the weekend, to be fair was not an oncology doctor, but more the need to read Harry's notes before entering. She didn't know what medicines Harry was on, she didn't know that we had the resuts of his cultures, saying that there was no infection present, in fact she denied the cultures could possible be assessed, thinking his first temperature was the night before not Tuesday night! She had no idea really about the plan for Harry, the protocol as to when his hydration infusion should end, she also had a poor ability to engage with Harry. Admittedly he was grumpy at the time! Then there is the docor who is summoned to reassess Harry medically in the middle of the night. I am awoken to take part in this of course! Half asleep I hold Harry's hand whilst he cries in disagreement at being prodded at 1.30 am as his oxygen levels are lower than they should be. Oxygen is wafted in front of his face to bring his sats up. My eyelids keep drooping to close and the doctor asks me if I have any questions, my only one is, can I go back to bed! There are too many instances to jot down here of doctors coming at meal times for example and wanting to poke Harry, they say they can't come back and Harry just ends up upset, the last time this happened I put my foot down and the doctor had to wait the 5 minutes until Harry had finished lunch, then he was very ammeniable and the job was probably finished in the same amount of time, to had she purseued her first attempt, a screaming Harry would have taken longer and harder to assess! I often think about people in hospital alone, without anyone to advocate for them, often poeple with dementia or a learning disability or too unwell to speak up. I often think of the patient labelled as aggressive, if they would be so, if more empathy, understanding and timely assessmennts by doctors were made. Inteventions are invasive and often approached very matter of factly and obviously necessary, but the way they are expedited effects the patience whole experience. I know it can't always be exactly how it should be, but if most of the time it was, that would be a great leap forward!!!!!!
So as I witter on and on, I feel better for writing this all down. I started writing this with tears rolling down my cheeks and finish having I think counselled myself to some degree, well until tomorrow and the kids awake screaming at me. Again that pile of paper work is still there, but I think it is vino and relax time now! Sometimes i think of post traumatic stress disorder and to some degree, I think that I diagnose myself as having that. Each treatment is like a trauma and as life evens out afterwards, it enables me time to reflect, I get angry at the suffering Harry has to endure, get cross with the systems I have to deal with, I try and re evaluate where life is for us and deal with the loss of my fantasy of 'normaility', working etc, anything but being a stay at home mum. I think, if life was even, then actually being a stay at home mum, does actually have its advantages and I could like it, but if life was even, Harry would be in school mon to fri, I would have time just with Callum, he would be approaching getting his 15 hours a week free nursery place come January and I would have a few hours to be entirely me. But life isn't an even playing field and so currently being a stay at home mum is none of the above and managing my boys through this whole process and I include my husband in that, well it can be the most challenging of jobs I have ever had!