And so with a bang....

So it’s the Monday after my Birthday, the couple of days after I’ve been zonked out by taking by my standards a huge 10ml dose of Morphine, Aaron went back yesterday, more tears, they’re totally unavoidable now, whilst I am fighting fluff for all my worth I truly know any day could be my last, I love being here but this must be what playing Russian Roulette is like and pulling the trigger each morning, the odds are stacked against me and one day there will ‘be a bullet in the gun’s chamber’.. It’s a horrible way to live your life but life I want despite the pain, the agitation and my irritability. It’s my brother, Phil’s turn to leave now and with his departure more tears as we say probably our last goodbye’s, there are no good goodbye’s now.

My fretting continues, I am taking slightly more and more morphine to control my pain, Jayne from MacMillan has been out again and between Jayne, Andy & myself it’s been decided that I need Morphine to be added to my syringe driver cocktail. So now it is a mix of Morphine and Midazolam, the idea is that a steadily applied dose should take the edge off the pain and the anxiety, my ultimate fear is I’ll end up on a dose so high I’ll sleep most days by, ultimately I realise this will happen but I don’t want to be rushed to that point. Jayne assures the dose of Morphine going into my syringe driver at 5ml is less than the 7.5ml that I’m already taking orally so it won’t make me anymore sleepy, it’s logical but again I fret. I’m certainly more relaxed even if only for a short period of time, I know we are fighting a losing battle here Fluff will get stronger the drugs will be increased to control it and the harm it is causing and this will continue until fluff has its final charge and the drugs can no longer contain it.

As the weekend approaches I’m, looking forwards to seeing my dear friend Tara and her amazing fella Pete, Tara and I worked together many years ago in a care home in Grimsby, we’ve stayed in touch, Tara even came to see me on Xmas day when we were in Grimsby and it was the day I ended up in Scunthorpe Hospital with my huge seizure, wow hard to believe as I type that this was eight months ago, so much has happened since.

Friday night and our guests arrive, any excuse for a Chinese takeaway for Andy hehe, he and Pete shot out to order it and to grab a rare pint. Andy nor I have ever been large drinkers but the odd social drink, this is nice that he can grab an hour away from me, hehe I’m still ranting when he gets home though! “Where’s my tea Mr Shute?” hehe.

As we eat Andy is suggesting plans for tomorrow, its Saturday and we are planning on going to the Marino lounge to introduce Tara & Pete to this beautiful area and ‘Café’.. I’m still full of scaredy-catness, what if we get stuck down there again?

Saturday morning comes, I have breakfast, I have a small top up dose of morphine for I need to prepare for the moving and handling in the hoist, the carers are lovely but my left side is paralysed, my arm is heavy and pulls on my shoulder, the slightest touch can be mega painful. The girls are so gentle with me I’m such a wuss these days. I like to sit in my all singing - all dancing chair, I think I mentioned it broke, we had a replacement delivered, mysteriously although the same you can feel the difference in the quality and sturdiness. So after the girls have got me out of bed and onto the commode washed me and I’m putting a dress on today! I sit in my chair for a few hours, chatting to Tara & Pete and Maureen, still running Andy ragged hehe. After the carers an hour later it’s the nurses to sort out my syringe driver, I’m excited now so I tell them about going to New Brighton, I am looking forwards to this trip. Bless Pete and Tara and Maureen, every time a team comes in as I can’t just wander off to the loo I have to plan my trips to ‘my bathroom’ (Commode) I obviously don’t want an audience so everyone plays musical chairs and heads to the lounge whilst my personal needs are attended to. Hehe there is no escape from Andy, he’s seen it all before and I’m still shy even though the care team have seen me in my naked totality but this is me using the loo so even the carers step out of the room until I’m ready for them to come back in and at that point Andy calls them. Today I’m not going back into bed, I’m going into my swanky wheelchair ready for my lunch time jaunt. After I’ve been tidied and freshened up in the hoist harness suspended mid-air Andy moved the chair just underneath me, parts of my poor bottom now are tender and getting caught on just a sheet is painful, so painful I want to cry. Chair in position, brakes on Andy and the girls have the sling in position and Andy has the remote to lower the hoist. As he lowers me I had the weirdest feeling come over me, I’ll let Andy tell this bit or he’ll be sulking if I don’t let him hehe.. (It’s MY blog Mr Shute!) hehe.

She’s a cheeky sod at times but I’ll let her off this time. So about to lower Julie into the all singing all dancing wheelchair and Julie said “My mouth, my tongue”, I asked “What”, She replied my tongue is tingling, my lip feels numb” I looked at her and her left lower lip was drooping slightly, as I lowered her another six inches into the chair I realised what was happening, or I thought I did. I asked her to smile, she could just, I asked her to tell me how she was feeling, her words were slightly slurred, I dialled 999asked for an ambulance, this had all the hallmarks of a stroke, remember with a stroke its all about acting FAST, do not delay, look stupid if you have to but every second counts. I explained all the symptoms to the operator she assured assistance was on its way but she still wanted me to take Julie through the stroke tests all of which I’d done, again she reassured help is on the way but we need to do this it will not delay things. Within 2 minutes we had a RRV and an ambulance crew here. Maureen, Pete and Tara were oblivious to these events. Again remain focussed if this is you or your partner. I explained to the paramedics they were checking Julie out and slowly she was returning to normal, she was still going to need admitting to A&E though.  I’d already let the carers go and I popped in to Maureen, Pete & Tara and explained about the ambulance crew.  Tara went with Julie, Pete and I would follow, Maureen was staying at home. We spent the afternoon in A&E before it was eventually decided what we thought was a stroke was in fact a seizure, scary for us all for this is the first seizure in her head or above her shoulders. Before discharging her; the Doctor explained Julie’s blood tests showed no infections but they did show her Haemoglobin levels were lower than they should be and he would ask our GP to get more tests done soon and to follow it up.

Okies me again, that's his fifteen minutes of fame this week hehehe. It’s almost six pm and I am being ambulanced home so much for the Marino lounge, Andy had been feeding me hospital food sandwiches and crisps and water hardly what I had planned. I’m crying again I’ve caused so much disruption, Tara and Pete reassure me but I’m so sorry. We made it home but I was washed out by the experience, it was frightening, I keep asking Andy, “Why is this happening to me?” Once in the house, the ambulance men love my ramp hehe. Once in the house the ambulance crew wonder how they’re going to get me into bed as ”we’re not trained to use the hoist and harness” good job Andy is now the master of the sling or should that be swing? Hehe. The ambulance men were stunned by Andy’s proficiency as he safely got me on to the bed. Tara and Andy helped position all of my pillows, poor Pete was relegated to the lounge again. Soon as I was wrapped up snugly everyone was back in to see me especially Maureen, she hugged me tight…. I slept the night away.

Early Sunday morning I woke Andy from his blow up mattress bed, well he heard me as I call it ‘jiffling’, “What’s up hunny?” “ I don’t think my catheter is working, is there wee in my night bag?” sleepily Andy struggled out of his ‘bed’ and came and checked me out, there was only a small amount, nothing compared to what I’d drank.. Its 02.00 and Andy is calling the night Nurses, at three they are with us and they flush my catheter, slowly it started working, I don’t think I mentioned it but on top of everything else I have a urinary tract infection! The team don’t like to change catheters during infection if they can help it. So we bid them goodnight and our thanks and its back to sleep, I’m still restless though and I don’t feel like I’m weeing, I ask Andy and I can hear his impatience at being disturbed barely forty mins after the nurses left. He shone his torch on my bag and he said there was some pee in the bag but again not lots so back to sleep ha! Thirty mins later I’m saying to Andy, I feel wet, I think I’m bypassing the catheter, sure enough I am. Another call to the nurses and its now 04.30 and they try flushing it again, no joy, I really don’t want this changing, one of the team, suggested trying to deflate the air bubble/tiny balloon they use to keep the catheter in place, yay, success I was peeing for England, I peed around one and a half litres in less than an hour! Andy and the nurses changed my special night absorbent sheet nicknamed a kylie (dunno before you ask) . Changes of sheets and things like Kylies are an art form when you can’t be moved out of bed.  First I was asked to roll towards Andy on the one side of the bed, as I held on to him for grim death the nurses push the damp kylie as far under me as they can and they place a partly rolled replacement in underneath it.  Once in place me saying “Mind my bottom” (It’s sore!!) I then roll flat and the team pull me towards them (I’ve got no left side usage), this enables Andy to remove the damp kylie and then pull the rolled up one flat underneath me. I’m soon covered with my cushions sheets and blankets, Winston is in position and so let’s try and sleep.  It’s been a rough weekend, I feel bad for buggering up Pete & Tara’s weekend, they reassure me but I’m so sorry.

Well the weekend ends on a bit of a high, I’d been telling Andy I wanted my nails varnished and I needed to lose my Nanny McPhee look (Sodding whiskers everywhere!) I needed waxing. In the week Andy stumbled across an amazing young lady…. (No not like that!!). We’ve fast realised getting a mobile anything or anybody into your house is almost like Mission Impossible, a friend of Letty’s Jacky came and waxed me a few weeks ago but she lives north of Liverpool and much as I love her I didn’t feel it was right to be dragging her over on a Sunday. Andy made a few calls eventually he spoke to a young lady called Rebecca. He explained my circumstances and although she now had her own salon and didn’t really do mobile work she was prepared to come and see me and sort me out, she had to check with her nail technician to see if she could make it on the next Sunday, ten minutes later Rebecca called Andy back and confirmed they could both make it., how lovely is this? Andy messaged Rebecca, they’d not mentioned fees not that Andy was bothered for whatever the cost he (and I) feel it is worth it. So Andy messaged Rebecca basically saying “thank you and by the way I’ll pay you in cash on the day, please let me know how much”, the reply was astonishing…. Rebecca responded, ”Andy there will be no fee, we won’t be charging you!” We’ve not met or heard of Rebecca, a total stranger and her colleague want to give up their Sunday to spruce me up, they don’t know me and they want to do it for free??? This world is full of amazing people but this I can tell you is humbling. Those that know Andy  know he is full of old fashioned values, lol this troubled him. He responded and told Rebecca that had we known her he would reluctantly accept their generous offer but as a first time he would be paying her, the response went like this: “Rebecca, If this is your position then I will give you an envelope with what I consider a fair fee in it, if you choose to keep it I am more than happy, If you feel uncomfortable about this and would like to donate some or all of it to say a charity, Julie has been supporting Clatterbridge Cancer Charity” That was the end of the subject. Sunday came and these two ladies are here and sorting me out, they are amazing, so friendly soooo very pretty too! So accommodating, they too had to play musical chairs as I had the carers arrive.  They were with me well over two hours, Andy had put £100 into the sealed envelope, and as they left me all sparkly and actually feeling like a woman again saying they’ll gladly come back. Andy handed the envelope to Rebecca and thanked the girls immensely. Andy came in and I thanked him I told him I felt feminine again, it’s such a simple thing and yes guys, it makes us feel better, it costs a lot but we are worth it, hehe treat your lady’s occasionally.

Pete and Tara set off home promising they’d be back in two weeks; they’re from my home town and they’re promising to bring me fresh Grimsby Fish on their return, trust me when I say there is no fish like freshly landed Grimsby fish, once the biggest fishing port in the UK now just a shadow of its former self. We waved  Tara & Pete off, my bed goes high in the air so I can get a birds eye view of the world. I’ll miss them, but ive got their next visit and fish to look forwards to, I’ve got my nails done, my nanny McPhee beard hehe has gone, (steroids cause hair growth except on Andy’s head, hehe nothing is going to help that one).

It’s the middle of the week and Andy called me, I can hear emotion in his voice, I asked “What’s wrong?”, “Nothing” came the answer something was, he was gulping another sign he’s fighting back tears the softy, it turns out Rebecca had sent Andy a picture text message and a short message with it. Here it is…..

 

 

It gets incredibly better, not only had this ‘Angel’ donated hers and her colleague's full fee to Clatterbridge Cancer Charity (gift aided it too!) Rebecca informed Andy that she intended to give up one Sunday a month to help other ladies in similar situations to mine… This world has some amazing women in it, none more Amazing than Rebecca and her associate…