Things change constantly…..

celebrate life

Today has been a day of mixed emotions and thoughts. Things to consider and work out, discuss and find a solution that suits everyone, not just me.

There I was this morning basking in the delight of the fact that Heffy is decreasing in size. It’s amazing by how much actually. If only I could lose weight by the same time/weight ratio I’d be one happy woman. Ross, the Registrar visited this morning and was again so thrilled at the smallness of it. When I say smallness, it’s not normal yet. I still have a solid lump there where it shouldn’t be, but now at least it doesn’t lean across to my shoulder blade on the right side and toward my ear on the left.

Things are improving and looking so much better. It has cheered me on in my resolve that this Heffy thing can be beaten and kicked to the kerb and in the not too distant future. I have too much still to do in the world to be sitting around keeping lumps company.

The first indication that things were being bandied around but not been mentioned as yet, was when Justine my Social Worker arrived looking a tad frazzled and tired. She’s a lovely girl and we chatted about the lump’s smaller size, how I was coping with the chemo and steroid treatments and of course life in this enclosed environment in general. Apart from a noticeable lack of energy after breakfast, I had zilch to report.

Then she asked if I had seen my team of doctors this morning. No, only Ross. She bit her lip and I thought ‘Oh oh.’ The crux of her inquiry was due to a mention during a meeting between the various teams of doctors, health professionals and her team of Social Workers, not to mention those from the various assistant funds such as the Cancer Council and Leukemia Foundation to mention a couple.

The leader of my group of doctors had put it out there that they were pleasantly surprised at how well my chemo has worked already,  so it may be okay for me to move to nearby supplied self contained accommodation with a carer in tow of course, for the 21 days between chemo treatments.

Above, just some of the units available close by the hospital used for this purpose. Not too shabby I think you will agree. If this is to be for me, then that is not a problem. The big consideration is who should be the carer?

It has to be someone who is a clean living, sensible adult relative or friend, who is willing to take time to be with me, not necessarily as a maid nurse for example, but someone who will be observant enough to know I need to get back to hospital should my health condition change in any way, like fevers, shakes, severe lethargy and so on. Cooking is done by the residents so that would have to be done/shared as well but everything else is provided.

My mind was whirling. It was still whirling when Tim arrived this afternoon and with what I am sure must have sounded like garbled nonsense, I tried to convey this information to him. Justine returned to meet and speak with Tim in my room, and more was explained ….things began to fall into place a little and I reckon Tim and I had our solution pretty quickly, but didn’t comment at this stage.

But before any of that was made definite, we were reminded that it may not happen…it’s a maybe situation that has to be planned for and looked at because of the time involved organising such a move for me.

Are you feeling bamboozled yet? Well let me tell you, you are not the only one!

The team of doctors arrived at the same time as dinner. I reckon they do that on purpose to see what you have to eat, and tonight they were welcome to anything that took their fancy. Because none of it took mine.

The subject was raised yet again and the question asked if there is a relative or somewhere I could stay other than one of these units. Not really. We have to be realistic here and admit that although my eldest sister lives in Brisbane, the suburb is miles away and quite frankly her health is not fantastic therefore I would not burden her at this stage of my illness.

So the units were explained yet again….honestly the leader of my group of doctors should have been a car salesman of top end machines…he’d be making a killing! He could sell ice to the Eskimos in my view. Finally, feeling bored, I took a bit of the control of the conversation and stated what I thought of the whole situation and how it should be managed if and when it arises. This guy must go home shaking his head at his wife saying things about a pushy woman who steals his thunder.

After all the what ifs, maybes, do you think, how about and so on that went on with this doctor and his team, it was then decided by the illustrious leader that it might not even happen because after Eric has done his last visit to my veins in approx 23 hours’ time, the next few days have to be closely monitored for my reaction and possible severe loss of platelets and all that is entailed with that part of the business. It was expressed that next week would be spent in here anyway under close observation so we would just have to cross the other bridge if and when it came up further down the track.

Yep, I was still feeling a little addled and I could see the tiredness on Tim’s face return as he considered all this conflicting nonsense.

The doctors left wishing me a lovely weekend. Lucky for some. No doubt the leader will be going out for morning coffee in his luxurious car to a pretty tucked away coffee place, with his family tomorrow to read the stock pages and  find where to deposit his next fat pay cheque.

Later my evening nurse Scott came and had a chat with us. He seemed to think we may be worried about the financial side of things. Yes and no, but the carer situation is the main priority. It seemed to me to have been a waste of good bloody time even talking about a situation that might not eventuate for some weeks yet. Tim and I walked to the Patients’ Lounge for a coffee and a peaceful private chat.

 

It was decided that the carer should it all take place in the near future or further on, will be Tim. He is fortunate enough in his line of business that he can work remotely anywhere within the country, as long as he has a computer with his necessary systems installed. Far easier than uprooting anyone else from their lives. One of the major things to be ticked off as passed is the least chance of infection/toxins I will be subjected to during this exercise, both from the carer and the accommodation.

Tim went to my sister’s where he will stay until Sunday, looking tired. He was happy to see such an improvement in my neck and myself in general, although I was sure to remind him that my energy levels are going to go down the drain over the next few days when this first lot of chemo is done. …and that might not look too good. I was sad to think his elation had been crushed somewhat by all this gobbledygook about my moving elsewhere.

gobble

Tomorrow though is another day. Another day that perhaps, just perhaps the food will improve ever so slightly. The Head Dietitian called on me today and asked why I was eating so little. She suggested I needed a high protein and very nutritional diet to sustain my treatment and depletion of energy levels and immunity. Well said dear tall lady with the fake magenta hair, too red lipstick and the worst looking retro glass frames I’ve ever had the misfortune to look at.

As anyone who knows me would tell you: ask a question and you will get an answer….an honest answer and if that hurts, tough.

I told her the fish they serve should be put in cans for cats and that in fact I wouldn’t even consider giving it to my cat who would walk away in disgust at the stench. There is too much cornflour in the soups. Desserts are laden with sugar and are just splodge in a bowl of sugary custard. Breakfast is unpalatable if an omelet, which is too rubbery to even contemplate, and those hash browns from yesterday? Keep them lady, they belong in the fast food outlets, not on a hospital tray. I asked what was wrong with giving fresh fruit salads which would be far better for every patient than the canned crap they serve. She suggested the yoghurt. Yep, that’s fine with me, but give me a good quality natural yoghurt not that milky sugary runny crap in a small container anyone can purchase at a supermarket.

I think I shocked her. The outcome though, with my ward buddy offering encouraging words of support and affirmation, was that we in this ward can alter our menu requests and ask for those particular things. She will ensure they are added to the available foods from now on and will then review the situation at their next meeting with the officials of the hospital….to see if the budget extends to fresh fruit, vegetables and natural yoghurt I guess. Oh and I suggested they get the fish elsewhere because it smells like it comes from a drainpipe somewhere near the sewer.

food

As I said to this woman who by now looked a little deflated and the red lippy was a tad smeared, ‘This is Queensland where fruit and vegetables grow so well and fresh all year round, it can’t be that hard.’ I probably have made an enemy but right now I don’t damn well care. I think it’s slack of the hospital powers that be and the State Government not to be making this a given in this day and age.

So on that note, (just a tiny bit defiant I guess), I will bid you all goodnight. I am looking forward to spending most of tomorrow with my precious husband, who thoughtfully brought framed photos of him and the fur babies, and of Steven ….pity there is little room to display them here, but they are on the window ledge for now where I can see them.

Thank  you all again for being here for me through this. I spoke to a dear friend from Melbourne today and she put a huge smile on my face – it was so lovely talking to her. Start that book Mel!!

Your love and support through this rocky time means the world to me, and indeed to Tim who is still struggling to get his head around the whole rotten deal. Much love and big hugs. xxxxxxx

good night take care

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6 thoughts on “Things change constantly…..

  1. Fran Macilvey May 27, 2016 at 1:25 pm Reply

    I am astonished that in places of recuperation and learning – aka hospitals, schools, colleges – the food is so bad. It stands to reason it should be fresh, and well prepared. Is that so hard? No, but then cooking is not valued as much as accounts admin or something.

    All the best! ((xx))

    • joskehan May 28, 2016 at 4:25 am Reply

      When I did my nurses’ training many years ago, the housekeeper and cook did all the cooking for the hospital and nursing staff in huge kitchens helped by dozens of young girls and boys working there. The wood range was burning 24/7 and there was always food available on the stove top, in the fridge or ready to whisk up for a patient who fancied something after not eating for a number of days. Everyone loved to hang in the kitchen. But that is all gone and it’s not a better thing.

  2. Gerri Bowen May 27, 2016 at 3:08 pm Reply

    Hi Jo! I don’t understand why you can’t stay where you are for the treatments. The worry caused to patients as they try to think of someone healthy, patient and who doesn’t have anything to do for a week?? Also, I suggest their dietitians need to sample the food they serve. I hope good news comes your way soon. Keep sparkling!

    • joskehan May 28, 2016 at 4:22 am Reply

      That was my first thought when it was broached by the Social Worker….why can’t I just stay where I am? They need to monitor my progress closely because of fevers etc and that’s not as easy if you are in another building and have to be transported by the paramedics etc…it all seems pointless to me. It was a lot of worry and confusion that the sick patient and the family really don’t need to be messing with at this stage.
      I’m not hopeful the dietary regime will change much…it all comes down to what is easier, takes less man hours and is cheaper I think. Health is not their first priority when it comes to the task of getting food into stomachs to keep them going.

  3. Kay Burnett May 27, 2016 at 10:39 pm Reply

    Well done for taking control of the conversation. Well done for bring up the quality of the food, It must be the same the world over. When visiting a friend in hospital a few weeks ago I couldn’t help but notice the ‘coca cola’ machine on every floor, what’s wrong with say ‘chilled mineral water’ ! They should have one of those tiny juice bars,you see in shopping malls (even if privately run) but oh no, Coca Cola. Hopefully you got the point across and you get some fresh fruit in the very near future. The accommodation sounds fine (perhaps start that new book while your there) take that step by step nearer the time.

    Keep your energy reserves for the most important things. Listen to some relaxing music. Try not to worry too much. When energy levels are low that’s okay it’s to be expected and it will pass ! Sending you lots of love

  4. joskehan May 28, 2016 at 4:16 am Reply

    Kay you are such a good friend and I’m lucky to have you. I agree about the Coke machines…they are so full of sugar and shouldn’t be anywhere near a hospital full of sick people and kids.
    I am relaxing and taking each day as it comes….stress won’t accomplish anything, so I need to chill out and forget the outside world for a while and concentrate on getting my body’s cells back in order.
    Much love and thanks for being here for me. Hugs. xxx

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