Sunday 30 December 2018

Another year bites the dust.

As another year comes to an end I thought I would contemplate the year that has gone. At the start of 2018 I gave up FB, I was tired of my own envy for other people's lives. My friends all seemed have endless health for themselves and their family, plenty of time and money for holidays and adventures and generally seemed to be having good lives (I do know that the reality might not have been what they portrayed on FB.) I thought that without the envy I would be happier. Of course Mike is still on FB, and he would on occasion tell me what people were up to, so that didn't help. I also realised that without FB I had very little contact with the outside world. Apart from my family and two very dear friends I have heard from no-one. Unless you count staff at the hospital or check-out staff at the supermarket I speak to no-one. I have been so lonely this year that I wonder if the shallowness of FB is worth rejoining. At least there, my screaming into the darkness is sometimes acknowledged. 

Mike's health has not improved despite the chest drain. Yesterday I ordered a wheelchair so we can at least leave the house occasionally. He's still a proud man, and I can see many arguments ensuing as a result. 

As for 2019, I'm scared. Scared of being totally alone. Scared of not knowing what I am to do when I am no longer caring for Mike. Scared of the unknown. 

Sunday 23 December 2018

In brief.

The respite was short. One night in the hospital, 1.5 litres of "fluid" the colour of a gold beer taken from the pleural sac and two antibiotics to take. The first night out he slept like a baby, last night he managed six hours, which is good, except at 5 o'clock this morning his coughing woke me, he was then hungry, and he wanted a coffee, and then at 6 the granddaughter could be heard saying she was hungry (she slept here as her mom was out on her works Christmas do.)

So by half past six, I was up, I had made sausage sandwiches for the pair and on retrieving the plate, Mike was back asleep. He didn't reawaken until nine.

I'm exhausted.

Merry Christmas everyone. 

Thursday 20 December 2018

Respite

Mike is in the respiratory ward this evening. They want to do some investigations, once he has had some platelets. I am glad of the peace and quiet. The constant coughing and breathlessness has a dripping tap effect, it can send a person crazy over months and months.

Top blowing.

Weeks of worry. Sleep deprivation. Unhelpful remarks. Too ill to help. Christmas preparations. Must be normal. Don't tell people I'm not very well. Let's pretend. No presents ready. Christmas Day menu. We've got to have. Too much food not yet bought. Final straw. Spilled drink. Toni playing. I shout at dog. "I'll clean it up tomorrow." I blow my top. Say things I shouldn't. "That'll make a change." "Haven't moved for months." Sleep in separate rooms. Still not talking. Just keep walking.

Tuesday 18 December 2018

If....

If I could have just 24 hours with the man I married I would happily give up the rest of time.

Monday 17 December 2018

Alone.

Today I feel so alone. There is no-one to help with the caring. No-one to help with the day to day tasks. No-one to help with the Christmas preparations. No-one to talk to. 

If you are reading this, just say hi. 

Sunday 16 December 2018

Why do things not turn out as expected?

When Mike and I met we were far from spring chickens, we would often talk lightheartedly about looking after each other in "old age". That time has come rather sooner than expected. Mike and I imagined that we would be caring with good humour and pleasantness, the reality is very different. Mike is miserable and bitter (I know it is hard to be infirm and ill) without so much as a thank you if I do something he has asked, and a far worse mood ensues if I do something he hasn't asked.  All of this adds to my woes, how do I maintain the expected positivity and humour when all I receive is negativity and bad temper? I don't know how others do it. I'm ready to run and keep on running. Poor Toni never gets walked, I never get fresh air (unless you count the air I get walking between the car and the supermarket.). My brain is fried, I can't remember a thing, and my body is struggling to cope with the simplest tasks.  I can't settle down and read, or even relax in the bath. Even as I sit here at the computer I can hear his constant cough......

As promised

This is what I made yesterday, the chocolate brownies probably won't last until Christmas, so I can't really gift them. They only got made as I bought some 95% cocoa chocolate and I couldn't eat it as it was so bitter.


Pecan brittle

Smashed pecan brittle

Pecan brittle in tins.
Not an awful lot for one day, but I used all my eggs on the brownies and as Mike was on the machine, I couldn't exactly go out and buy more 😀.

Saturday 15 December 2018

What have I been doing?

Clearly that is a rhetorical question.Only ten days until Christmas Day and I haven't made a single present. I had such grand plans and then life happened. We spent all morning yesterday at the hospital trying to get Mike some help with his breathing, the day before it was two units of blood. Both have helped in an infinitesimal way. Mike still only manages the stairs once a day, down in the morning, up at night. I had imagined that I would get things done on the days he does dialysis, three hours should be enough time shouldn't it? It would be if I wasn't running up and down the stairs with food, drink, a hot water bottle, hand warmers, a second hot water bottle........ Add into the mix a charming granddaughter three afternoons a week and you have a recipe for failure. 

Will people forgive me? Who knows, most of them have no idea what we are going through, Mike isn't the sort to complain on FB and I'm not on there anymore (huge sigh of relief from everyone who was tired of my "negative" statuses and constant whining.) The staff at the hospital know, Mike is very open about his feelings, some are ready to assist us should the time come. There's that limbo again. 

I promise to come back tomorrow and show you photos of what I have achieved today, I better get started, Mike is on dialysis shortly and little M. is due at 4 p.m.!


Tuesday 11 December 2018

Limbo.

Well we came away from yesterday's appointment pretty much none the wiser. Mike had to be wheeled from the car and back again, I'm becoming quite adept at steering the hospital wheelchairs now. The consultant doesn't know why Mike feels so poorly, he doesn't think it is a haematology problem, The draw back of having multiple things wrong with you is that each consultant can blame one of the others. I don't blame Dr. B., out of them all he is really the only one we truly trust. 
Mike has a bone marrow biopsy scheduled for Tuesday, hopefully that will provide answers one way or the other. We are due to see Dr. B. again in a month, until then we are in limbo (well I feel like I am, I don't know what Mike is thinking anymore.) 

Sunday 9 December 2018

The big one.

Tomorrow we have a very important meeting with the haematology consultant. Mike insisted that he couldn't wait until the end of January and had it brought forward. I feel as if I am in a weird world where I suspect there are no answers, for either of us. Mike knows what he is going to say and I just have to nod my head and support him. 

I will fill you in on any news on Tuesday. 


Wednesday 5 December 2018

Advent fun 2.

Sheena thinks her new earrings make her look festive.

The Tiger twins aren't too sure which star is the one to follow.

Monday 3 December 2018

Advent fun.

Did I tell you my daughter split up with her boyfriend in July and that as a consequence she and my granddaughter were living with us for a couple of months? No obviously I didn't as I wasn't blogging. 😆

They have since moved out, but the house is still full of their stuff, we collect the little darling on a Wednesday from school (she only started in September) and have her until her mom has finished work. We then take her to school and collect her on Thursday and Friday. We fit dialysis and hospital appointments around the new timetable of life.

As we have some of M.'s toys around I thought it might be fun to Instagram what they have been up to while she is away (her mom shows her the photos on her phone). I know the rest of the world have elves, but I have never liked conforming to the norm!

I thought I would share with you all the first three days.  

Somebody's tiger wants to eat the chocolate!

Sheena wanted to help sort the decorations.

The Tiger twins don't seem to understand the idea of an Advent calendar.