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Tuesday, November 29, 2011

The universe provides encouragement and some good advice too!

Last week when I was feeling doubtful about continuing with this blog I sent a message out to the universe asking, ‘What should I do with my blog? Should I stop writing it?’
To my amazement the next morning I awoke to find an email in my inbox that started as follows:
I asked that you contact me after coming across and reading the great content on your blog—your site really caught my eye.”
So, with deep gratitude to the universe for providing encouragement when I needed it most I would like to share with you an article written by Melanie Bowen (the author of the above email).
Melanie Bowen is an awareness advocate for natural health and holistic therapies for cancer patients. You will often find her highlighting the great benefits of different nutritional, emotional, and physical treatments on those with illness in her efforts to increase attentiveness and responsiveness on like topics.
Here is her article:
The Importance of Fitness For All Ages
Perhaps you're feeling down about your doctor's opinion on your life expectancy. Maybe you're feeling glum because - let's face it - being sick is never fun. Whether you're dealing with mesothelioma, leukemia, skin cancer or even diabetes, medical issues can wear you down physically, but emotionally, as well.
You may be under the false impression that exercise is for healthy people, but this isn't true. Even if you're very ill and are exhausted from battling your terminal illness, exercise can help improve the way you view your body, your disease, your physical appearance, and even the world.
While traditional medical treatments may be exhausting and stressful, a bit of relaxing exercises can not only burn up nervous energy and help stimulate your muscles, but can also relax your mind and help you let go of the tensions of the day. You don't need to buy expensive gym memberships or purchase fancy home equipment in order to reap the benefits of exercise. In fact, there are a number of ways you can incorporate fitness and exercise into your daily life that are both inexpensive and simple to get started with.
For example, when you're preparing for a treatment, consider taking a brisk walk outside. You might enjoy watching the sunrise or maybe you're more of a cool evening person. Walking up and down the stairs of your home is also one way to get your blood pumping. While exercise may at first be a bit overwhelming and tiring, you'll soon find that you have increased self-confidence and increased energy levels.
Make sure you discuss any exercise plans with your doctor before you begin since, depending on your health status and treatments, he may have information or suggestions for easing yourself into exercise. Don't be embarrassed or shy to admit that you want to exercise despite your diagnosis. Your doctor will be able to not only help you figure out your current fitness level, but can offer suggestions for increasing your fitness level slowly so you don't injure yourself or become overwhelmed with the idea of fitness.
If you're scared to try something new alone, don't be afraid to grab the help of a friend. Sometimes just having someone who isn't afraid to look silly and dance around the house can be a great way to ease into at-home exercise. Put on some music and shake it loose with your friend. You can eventually work your way up to aerobics or an at-home step exercise program.

Tuesday, November 22, 2011

Bad blood, waiting for wee and I smell poo - our day in hospital

To treat Oscar’s urine infection we were given a course of antibiotics to take 8 hourly for 7 days. Unfortunately, the hospital pharmacy did not put enough antibiotic into the bottle and we ran out this morning on day 5. I rang Dr Margaret to get some more and she said to come to clinic and get it over and done with while we are in there. So that is what we did and this is the story of the comedy of events that followed.

I was well prepared for a considerable wait as Dr Margaret had mentioned it was a GA (general anaesthetic day – meaning lots of kids having bone marrow aspirations and other procedures) so we didn’t hurry. When we got to the hospital car park it was full and we waited and then circled around and around for some time before finding a park on the very top level in the pouring rain. I got the pram out of the Ute and the boys into the pram and then raced down the many ramps and into the hospital. When we arrived in clinic they didn’t have someone to take bloods so we headed down to the general pathology for the hospital and there were only 3 people ahead of us, which was great. When Oscar got called in Auden insisted on coming and was fantastic, sitting still and waiting for Oscar’s blood test to be completed. Oscar likes to pull the little table out that we lean his arm on and then he likes to set up the cotton wool ball, band aids and white swabs himself for the nurse. There was another kid in the room who was autistic and hysterical about having his blood taken which I thought might disturb him but Oscar submitted, with certain controls, happily and we were done. On our way out four staff members were holding down the little boy with autism trying to get his blood test completed while he screamed and fought like mad. Auden was worried about him but Oscar said, “It’s ok, they helping him.” Auden seemed to accept this as the natural law (because Oscar said it) and was happy to go back to Oncology and play while we waited.

Two hours later Dr Margaret tells me Oscar has to have his blood test again as his blood clotted. So we have to head back to Pathology. I leave Auden with a little girl (I will call her X) he always plays with and her mum and the volunteers in the play room at clinic and head to Pathology again. It’s after midday and Oscar is troppo tired and keeps asking for bottle bed but we are lucky and we get one of his favourite nurses for the second blood test and this is enough for him to rally through it.

We head back to wait for the results and to collect a sample of his urine for testing. While waiting with X and her mum we get talking as we do each visit. X has a rarer form of cancer and has had a long 14 month intensive treatment with huge amounts of time spent in hospital. Today is to be her last intensive dose of chemotherapy but X’s mum has been told that her Oncologist is on holidays and hasn’t left any instruction – so the chemo had not been ordered and there is some disagreement about whether she has finished treatment or needs this last dose. X’s mum has spent last night plying her with the necessary medications in preparation for her treatment today and has been told in the past that every chemo treatment is essential. She doesn’t want to leave without the treatment. She has been waiting since 8am for the staff to locate her Oncologist on holiday by phone and verify that the treatment can go ahead and also waiting for the chemo to be made up.

To top all this off, X’s mum is feeling a bit fragile after having found out last week that her daughter has been on an incorrect medication for 9 months. This medication has severe side effects and her daughter has reacted terribly and, despite asking questions at every stage, each of her four specialists including the immunologist failed to realise she didn’t need to be on this medication. If that isn’t bad enough all the staff had a meeting about this issue several weeks ago and not one of the people present at that meeting thought to ring X’s mum and say, “Stop giving her the medication.”. So, let’s just say she is not feeling a strong sense of safety about the care that she is being provided.

I tell X’s mum she is doing so well not to be screaming and yelling at this point in time, having been given a different story by all medical staff involved in today’s confusion and still waiting and giving her daughter preparation medicine for the treatment. She says that she doesn’t like to complain and that she has lost it several times before in this process and feels very close to losing all control. We discuss how awful it is that you have to be pushed and pushed and pushed by the system into a state of unnatural and unnecessary rage against a machine that never listens until you are in their face screaming. X’s mum says the only times she feels she has truly had a sense of getting the correct treatment has been when she has been raising her voice in an extreme fashion that is so far beyond her normal self that it makes her feel like she has been possessed.

This is amazing to hear as from my experience of seeing her every fortnight for the last year she is always so deeply quiet and almost dispossessed – when she talks about her daughter’s prognosis and current status she talks as if it is happening to someone else. I understand this completely and recognise it as the coping mechanism that it is because if you don’t detach from this journey you can’t always do what needs to be done as a mother. I like to call it the iron mask of extreme motherhood and it is an essential mask allowing you to attempt your best at modelling some form of calm and resilience for your sick child.

I don’t tell you all of this to share the grief or burden you but because I think these stories are never told, precisely because the iron mask of motherhood requires us mums to keep it all together for our children at the very least. We try to show everyone we are coping; we are calm, good, attentive role models for our children no matter how much we are pushed beyond our comfort zones or how much we witness our children being forced to submit to all kinds of unspeakable situations.

The combination of trying to find your voice so that you can stand up for your child sufficiently when the system that is inefficient impacts upon their level of care and feeling the intense responsibility of that care being in your hands and the desperate need to shut your voice up in order to stay calm and appear as the model of motherhood is a form of insanity. I feel strongly that more needs to be done to support the parents in hospital. There needs to be an advocate who takes over the role of following up with medical staff about serious questions relating to their care as they arise. As a parent who had to truly push herself to the end of all rational reality to be heard in hospital I can say that just the exhaustion of asking as many people as possible until you find the right resource is hard enough. Surely, there could be an expert who we could delegate this too, especially when we have had no sleep and are in no fit state to do anything other than barely breathe in and out. No wonder there are children who have been abandoned living in hospital. There just isn’t sufficient support for parents and if there is someone out there reading this who knows how to go about changing this I’d love to hear from them.

In the meantime, Oscar’s bloods are improving. We will wait to see if his urine test is clear and continually check it from now on. I have an appointment in January with a paediatrician kidney specialist to follow up on his reflux which we are presuming has not yet healed and to check how his damaged kidneys have held up over these long months of chemo. Next appointment is Thursday 8th December in clinic.

We didn’t get out of there today until 3pm and I had forgotten to eat and Oscar had poo all through his pants, running down his legs and in between his toes and we had to push the pram in the pouring rain back up the many ramps to the top of the car park, which was flooded. We finished up with my shoes immersed in water ferrying the boys from their pram to the Ute and Auden saying over and over, “But I can smell poo Mummy”.

All I could think is how lucky I am that I have found a reliable team of Dr’s for Oscar’s treatment and that these little inconveniences are insignificant when compared with the massive issues so many parents are facing as they hull up for another night in there.

My thoughts are with them and with all of you and your families. x

Wednesday, November 16, 2011

Urine Infection Confirmed

Ok, the hospital rang to say that Oscar has a urine infection. It is the type of infection that usually stays in the gut but can transfer to the urine. I don't know if this means it is related to his urinary reflux or whether it is due to the bout of gastro that we have all had. They are allowing us to treat him at home with oral antibiotics for a week and then we will go back to Clinic next Thursday to see Dr Margaret and review his bloods and treatment. Pete is heading in to the hospital pharmacy after work so we can get the antibiotics into Oscar tonight. Its a great thing that Dr Margaret is so thorough, that we have identified the source of infection before the temperature and resulting trip to emergency and now we have a reason for why the bloods are so high. All in all, all is well. Thanks for checking in on us again and I will update you on the status of Oscar's bloods next week. Love to you and all your families. :)

A huge day in hospital

I'm sorry I haven't blogged for such a long time for all those of you who have been wondering about little Oscar. He is a big 3 year old now and full of mischief. I have been feeling disheartened about writing on the blog for various reasons. I am thinking of ways to change what I write here, to find a different approach that fits the different place we are at on this long journey but I haven't quite reached it yet.

The important thing is its about Oscar and I want to continue it as a record for him. So, today was a huge day. Hospital wait time was long and then they discovered they hadn't taken enough blood and we had to start all over again. Oscar's entire approach to Clinic has changed now he is a bigger boy (as he keeps telling me) and he likes to take control of as much of the process as possible. So, having to break it to him that he would need a second blood test today wasn't ideal, especially as it was midday and his bedtime, but he stepped up and did what had to be done as he always does (although not without telling the nurse very definately - "But you already done blood test. But, you did it. BUT, YOU DID IT ALREADY. OSCAR ALL DONE in very load screams). I just love his ability to stand up for himself.

Auden was an angel and trooped along colouring in, playing with trains and cheering Oscar up when he was sad. Not one whinge or complaint. Its a lot to ask waiting most of the day in hospital but he just knows how to help out when it matters most.

We met up with another mum in clinic who I haven't seen for a while. I am in awe of her. She has two boys 11 months apart who sit quietly eating fruit and drawing for hours without any chaos or harm being inflicted upon each other or anyone else. I have always thought they are twins but they are just 5 and just 4 years old. The most well mannered, quiet, patient little boys you could meet. When we used to see them on hospital stays they would both be sitting up in the hospital bed quietly reading books. No restlessness, no load yelling, no fighting. I always thought to myself, 'How does she do it?'. Today she appraoched me and asked how Auden has coped with Oscar's journey. I said he has struggled more than Oscar. She smiled and sighed saying she had wondered as her boys are close and the sibling has suffered a lot more adverse long term effects and she wanted to know if that was my experience too. She said she has looked all over for books of stories of other mums and asked but the hospital don't provide any support for siblings and she has found her son clinging to the one best friend at preschool and struggling with any separation even though he has had so much separation from her with his brothers treatment. She is from Japan and has no family support and just the calmest, gentlist, caring mum. We had a good chat and it helped us both to know that our sons were having such similar experiences. I told her she is an exceptional mum and her boys are just divine because she is an inspiration to me.

When we were told that Oscar had to have his bloods redone she got most upset on our behalf, which was funny because she is always so reserved and shows how she too can get overwhelmed by the frustration of the system. Usually, the mask of motherhood is so claustrophobic it disguises these feelings but its easier to feel it on behalf of another mum. We had a good laugh at the 'go with the flow' system that we feel deep gratitude for and absolute resentment all at the same time.

Then Dr Margaret tells me Oscar's bloods are very high and she is concerned. I don't have any real reaction to this because I have learned that reacting to blood results is pointless. No one ever really knows what they mean so unless they can tell me something definate I just let it roll off me like water of a ducks back. We took a urine test and we will get the results on Friday. If they come back positive we may have a stay in hospital at the weekend, which messes with the boys combined birthday celebrations, so fingers crossed its just another blood result that makes no sense (or he has a virus or any other number of other things,,).

This is why I don't update you because the updates don't mean anything concrete and I am trying to live a life without focusing on blood results and medical statistics. This journey of medical testing won't finish until Oscar is 9 years old so we have to just get on with it. If we place Oscar's medical status at the focus of everything we miss out on the good stuff.

I am moving on to focusing on different ways to help the people who helped me. I have been learning to run and can now run 5km. I want to start doing some fundraising for Cure Our Kids when I can and working towards the City to Surf next year. I am working now and life is busy with things that include Oscar's health (of course) but are not exclusively centred around it.

We got home today at 2.30pm and collapsed on the lounge together and all three of us slept until 5pm (although it could better be described as 'loosing time'). We awoke wondering where we were, how it got so late and feeling generally out of sorts and confused. Its amazing how exhausting it is in clinic - physically and emotionally - and how so much of what you are taking in is subliminal. There was one child in particular today who was in a diabolical state and it doesn't impact you in any conscious way but somehow the energy of the place infuses you with the suffering and courage and patience and madness of the journey that is also such a deep part of you and your journey. Noises, smells, situations, decisions, negotiations that you don't want to have with your child - all bubbling away under the mask of coping and finding the joy of every second of connection that you have in clinic with anyone and especially with the people who are your central support team (Dr Margaret, Donna, Mary, Sunil, Erin - we love you). Phew, glad its over for another fortnight (hopefully) and glad its always there to help our little Oscar turn 3 and smile and clap and make himself heard.

Thanks for checking in on us. I hope you and all your families are doing well. Take care. x