Your prayers please...

Andy again, sadly Julie is too ill in hospital to even look at the blogs currently..


Monday 27th April 2015, its been a long day, sod June 21st being the longest day, today is for me.


I've had less than an hours sleep since 08.00 Sunday morning, this isn't a time to sleep I've a very poorly wife and she needs me before I need my bed..


June and I headed in to the ward its Called the Short Stay Surgical Ward, Julie has her own side ward, in itself that's ominous. she's asleep, I was there for five hours, well I did my usual lets make the staff my friends in case I need to grab extra time with Julie, amazing what two dozen iced lollies or lollie ices as they call them here can do in terms of good will.

 
Sadly there were no Doctors about, Julie explained one had seen her earlier in the day and he said they would be doing ultrasound tests on her over the next couple of days and they intend to do an MRI scan on her brain. Julie said "He asked me what I want to do if we find anything on any of the ultrasounds or scans? She answered "I don't know right now, ask me when you find something." I knew instantly the relevance of what he was asking, Julie did too, she may be ill, she may have brain cancer but she hasn't lost her mental capacity. The next words I spoke were some of the hardest I've ever uttered. "Hunny, a few weeks ago you wanted to decline the Chemo and I begged you to fight it, a combination of June and myself willed you to carry on because you seemed fit enough to fight on, I also said at the time if I ever felt the time had come that your quality of life was falling away and that in my view you should probably reconsider all of your treatment options I would honestly tell you............., I truly feel after the last day that time has come" She looked at me and responded "I am not ready to give in yet, I want to fight it, IF Dr Haylock was to say to me that the tumour was growing and the chemo wasn't working on it then I'll call it a day". Its so hard being prepared to let the one you love, your soul mate know that you're prepared to let her go to stop her suffering, I feel guilty too in raising it, I am pro-life but I'm anti suffering, right now she has suffered more than most of us could ever handle....I told her that she had my full unconditional support and I felt she was being so brave, I held her hand briefly as she slipped in to another bout of sleep. Of the five hours I spent with her she was mainly asleep for four and a half of them. Part of me is questioning whether I did the right thing those few weeks ago in asking her to fight, I look at her today and feel I was being selfish, at the time I felt it was the right decision. I do not think Julie realises just how poorly she is right now, her breathing is shallow, she is constantly asleep and she is not eating food, it is a recipe for a situation that is far from wanting to fight this. Julie has made her decision though and I will continue to fight for the best for her no matter how little or long she has remaining.


During a short bout of awakeness her phone buzzed, "That's been buzzing all day" she had me check who it was, there were only three messages, she said "read them to me" basically she's lost interest in her phone, I asked her did she want her ipad bringing in? "No",


7pm came and I went to kiss her goodnight, visiting is over, "Please don't leave me, I don't want to be alone" she begged. I held her hand and sat back into my chair. she dozed off again soon her breathing was consistent with a heavy sleep, I left around 7.45 I'm exhausted i've been awake 36 hours all but and I have to update the family now. My bed, my empty bed was soon calling me.

 
I woke Tuesday morning, I headed into work, I called the ward to see what sort of night Julie had had. "Julie who?" came the response..... Err I'm not impressed. "Julie Shute, she's in room nine" the response was Julie had been moved to another ward. It turned out to be Ward 26 up one floor.. I considered getting off at the next junction and driving back to the hospital. Its a sign of Julie's illness that she is too tired, too ill to let me know. Again Hospital Staff... Moving a patient, surely a call informing the next of kin isn't too much trouble? Clearly it is....


I spoke to one of the staff nurses on 26, she said Julie had had an ok night but "She has pulled out her Vemplom line so she's missed two courses of her antibiotics" Doesn't sound like Julie to me. The staff nurse wanted to ask me some questions as "Julie is mainly asleep so we haven't been able to ask her". Two questions, 1) How does Julie cope with the stairs at home and 2) is she able to prepare her own food and feed herself? I gave her the answers, I need to get my head around what is happening here, so far as I know the MRI scan hasn't happened the Ultrasounds have found nothing conclusive.. The answers to the questions by the way are 1) She cannot walk stairs now hence I've had two stair lifts put in. The answer to 2) is She could (if she so wanted but she didn't want pre admission) have made her way to the kitchen to fetch a cold plated meal but hot foods, and cooking are too dangerous for her now AND besides that she has 24/7 someone with her, she cannot be left alone.

 I called the district nurses as they were meant to be visiting Julie today at home so I needed to cancel their visit (remember consider others even though you are focussed on your patient) . I used it as an opportunity to discuss options, if Julie is to be discharged with no treatment I need to plan for her comfort at home, I'm not sure I've got my head around this yet, am I jumping the gun on the strength of two questions?..... For sure now I'm going to need commodes upstairs and down stairs. The easy option would be to 'isolate Julie to our bedroom, its got all the comforts of downstairs and it would be easier to move her super dooper all dancing chair to the bedroom but I want to keep her life as normal as possible.

 
I worked until 1.30 and drove to the hospital Julie is in and out of sleep, she's not eating, she's blaming it on the bed, she can't sit upright. They've got her an air mattress to prevent bed sores there is a electrically adjustable bed outside her room ready to swap over for her, suddenly she is in panic, she doesn't want to get out of her bed because of her left leg, she's still of the view it wont work. Not long after and two physiotherapists come to visit Julie, what followed left me speechless. The lead physio introduced herself to Julie and explained they wanted to help her up and to see her with a walking frame. Julie just pointed at me and bellowed "Get him out of here now!" Wow, where the hell did that come from? I just backed out of the room and leant against the far corridor slightly up from her room, I wasn't watching or listening I was just checking my tweets etc when suddenly "Make him go away! Now!" I felt uncomfortable in my wife's presence for the first time in my life. One of the Nurses came over and rightly enquired as to my relationship to Julie, I explained "I'm her husband".. The Nurse wondered if Julie had been admitted with a stroke, I explained brain tumour and brain cancer. Julie's later justification for her outbursts was "You always speak for me, you always tell them how I am feeling" I explained I only (normally) get involved if she asks me to comment and I cannot possibly explain to anyone how she feels, only she knows that.

 

It turned out the physio was happy with Julie's left leg working ok-ish. As she left she said "you can go back in now" "If I dare", I stood at the door and asked "Well, can I come in?" she answered "of course"  whilst all this had been going on the Nurses had switched Julie's bed and she was straight back in it. She soon dozed off, I shot out to buy her  couple of night dresses. On returning a meal had been left for her and she was awake, despite the changing of the beds and being able to sit up, the meal remained untouched.. "I'm not hungry" .  I'm concerned by the lack of food intake.. I left not long after, I cant go straight home, our house is big, spacious and despite my size at times like this I feel tiny in it, I headed to the mouth of the Mersey to watch the Sun set over the Irish sea, I can just zone out here, I stay in my car for its still cold....Eventually I drove home straight to bed, On previous nights alone like this Julie's favourite 'non-stieff teddy 'Winston' has been a comfort for a 58 year softy however I took him in to Julie to watch over her for me...  

 
Wednesday and I'm in the lift and Julie messages me, apparently the Doctor was on the ward, he I wanted to see!

 
Again nothing could prepare me for what was to come when the Dr appeared. I asked him for an update on where we are... Ok; his boss was concerned at Julie's continuing low Oxygen levels, something is causing it so he sent Julie for X-rays and a CT scan. A Blood Clot has been located on Julie's lung close to one of the main arteries! Will this madness never end was my first thought?, then common sense kicked in.. "So the symptoms of a blood clot are low oxygen levels, breathing difficulties,  racing heart beat and low oxygen levels leads to tiredness?" yes they are all symptoms! It's probably the only time I can envisage saying finding a blood clot is a good thing, is this the break we've been hoping for? The team have already started to treat the clot, the Dr said "we'd hope to see an improvement from tomorrow!" I asked how long for the clot to dissipate? 7-10 days but no guarantees. It seems the power of prayer has found us some temporary respite... Its hard to describe the feeling, we still don't know if this is the sole reason for Julie's problems this week but we do know they were/are a significant contributor. Julie has said previously before the last tumour was confirmed that she knew it was back and that she knows her body, this makes it easier to accept her decision to want to fight on but why won't she eat??? I mentioned it to the Dr suggested food supplement/Nutritional  drinks like Ensure, he either hadn't been made aware of the lack of eating or he hadn't thought about it but he agreed with my suggestion, he's going to prescribe some for her.

 
Today (Thurs) Julie has perked up just a little, is it the drug tackling the blood clot or was it her visitors who did put a smile on her face? Adele & her Mum who travelled from Doncaster and Rebecca who travelled over from Liverpool. she (Julie) is still not eating though, she is still sleeping heavily and a lot, I tried to lighten the mood with some of my daft humour but its not appreciated and one comment I made she just looked at me and said "I might just as well shut up".. I'm sensing she is beginning to 'push me away' I might be paranoid, but I've sadly seen this before. They're all the  classic symptoms of cancer I'm afraid and part of a downward spiral that needs to be broken is the refusal to eat if its not well the future looks short & bleak. I thought it might be the hospital food so I dashed to Sainsbury's and food shopped, half a spit roast chicken, salad, a mix of fruits that she loves, pears, grapes, raspberries, blueberries, sliced pineapple, despite all of this she either fears the acidity in them on her stomach and she still 'wasn't hungry'... Despite saying she wants to fight, currently Julie's actions are anything but the fight she said she wanted to continue, Its still very early days, so many factors so confusing.... I still feel I'm on a rollercoaster, I'm still convinced our time together is limited...I keep asking myself ... Where does this leave me or us?  So many questions, so few answers......... I'd ask for more of your prayers please...