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. 

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. 

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 😀.

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.!

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.) 

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. 

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.

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.

When the wind blows.

The weather here is a tad blustery (I don't want to exaggerate!). Gale force gusts had taken down a couple of fences when I woke this morning. On a World scale this is nothing, two fence panels on the floor (broken of course), the only problem really being that Toni could easily go for a wander around the neighbourhood (watch out cats!)

I kept her locked in and after breakfast set about securing the perimeter with all the flair of  Heath Robinson. The panels are supported now by various crates full of stone and a couple of poles at jaunty angles which are weighted at one end with heavy bags. 

I should be proud / pleased that I have proven my self-sufficiency, I don't need a man in a crisis (the builder will be replacing the panels when the wind dies down.) Instead I am a blubbering wreck, it's a job that Mike would have done just a couple of years ago. It's the little things that set me off.

Fundamental error?

Okay so I made a fundamental error. Any of you out there who are crafty will know that: 

• Four weeks isn't enough time to make everyone a present.
• You can't make biscuits or sweets a month in advance unless you can freeze them (my freezer is teeny tiny and full). 
• I'm not fast enough at doing stuff these days.

That doesn't mean I am giving up, it just means I will have to wait a couple of weeks and then go on a made cooking spree (I have more chance with edible presents than I do knitted / crocheted / sewn.)

The plan is:

• Chocolate truffles (various flavours).
• Toffee (various flavours).
• Coffee cups (can I really temper chocolate?!?)
• Cranberry and white chocolate cookies (they are divine).
• Pebernødder (done these before and Toni loves them).

I just have to be patient now.

Let the countdown begin.

Despite all our troubles, I am determined to make Christmas special. With only five weeks to go I need to start thinking about the gifts I am going to give. 

I plan to give everyone gifts that are at least in part homemade, be that blackcurrant gin (more a liqueur than a gin), sweets or biscuits. 

These are ready to wrap.

I am busy looking for recipes now, for things I can make that will keep until Christmas. 

Reality check.

It's a strange world. We all know that we will die one day, and yet no-one wants to actually talk about death. We brush the subject under the carpet, imagine there isn't an elephant in the room, pretend that medical science will find a cure next week...... People don't like having to face up to it, even the medical profession try and gloss over things. When Mike told the CNS that after eighteen months of no progress he had had enough her first response was "would you like to see a counsellor?" Er no, not unless they have a magic wand / cure for Mike's lack of progress. Can they make his haemaglobin normal? Can they increase his platelets? Can they make him feel fit enough to walk around the park with the dog? Of course they can't. There is nothing that they can say to change the fact Mike is on borrowed time. His body is tired, there is only so long you can be on dialysis even if you have nothing wrong with your blood and bone marrow. To have two things dragging you down means the end is bound to be sooner. We are both tired, we have reached a point where, unless something drastically changes, it is time to call a halt to treatments that are simply prolonging the inevitable end. 

Would you believe it!

Nearly a year has passed since my last blog entry.  So many times I have thought of posting, so many times I have decided not to bother as nothing has really changed. I kept waiting for that massive / small improvement in either Mike's health or mine, but  it hasn't happened. 

After over twelve months of no change, and with the news that there is now no chance of being put on the kidney transplant list (we had been told he would be put on the list once he had recovered from his SCT) Mike's thoughts have turned to what he wants to do when they tell him his myeloma is back or his dialysis is not working. It is now his myeloma and his kidney disease, I am the carer, nurse, slave, who tends to his every demand and need, nothing more, nothing less. 

I try desperately not to be bitter, but I have no time to be ill, he is always worse off than me. I permanently mourn the loss of the man I married, the Mike I have now is overly demanding and selfish. His insistence on being optimistic at all times gives me no emotional room to express doubts and fears, he no longer cares how I feel if I am not feeling optimistic. 

I so want to be happy and cheerful. I want to be happy with him. I fear I may never be happy again.

Now I feel awful that this post is so negative. I will try and find something more positive for my next post.  x x x  

Looks can be deceptive.

Looks can be deceptive. Take this little chap.

He (let's assume it's a male)* looks so cute. His song fills my garden with such a sweet sound it fills my heart with joy. 

In actual fact he is an awful bully. Today I had a couple of visitors who I hadn't manged to spot before, I now know why. Mr. Robin attacked them as they tried to feed!

This one just about managed to get a quick beakful before the robin pecked her (let's assume it's a female)*. Her friend was acting as decoy at the time. 



*If a passing reader is able to sex my birds I will happily correct my text. 

After shock.

Some days I feel more nuts than usual. Today is one of those days. 

Yesterday we had a heated discussion over nothing and that lead to misunderstanding and hurt feelings on both sides. Today, like every other time it has happened, I find myself feeling overly sensitive and tearful and anxious and the list goes on. Does anyone else in the world suffer argument after shock? Am I the only person who takes days to recover? 

I thought I would share this photograph of Toni trying to climb a tree after a squirrel. She is my sanity.

Half way there.

Can you believe we are half way through January? Yet it is only just over a month since I had the kids over and that feels like ages ago.  January short, a month long. 

Time is a funny old thing.  It is actually eight months since Mike went in to have his SCT, and in some ways we are still only half way there as far as recovery goes. Still his platelets lurch between 30 and the heady heights of 40. Despite several transfusions his hb creeps down to a point where life is almost impossible as simply standing is too much (we are still hopeful that the transfusion he had last Thursday will be the one that keeps him above 10 / 100).

I try to hold on to time, frantically trying to make the daylight hours last longer. Yet it forever seems to be evening. I long for the spring equinox, but don't want to find myself near the end of March. Gosh it is all so confusing.

Here's looking at you red!

Yes I admit it, until relatively recently (if you can call 10 years recent) I was pretty much a no vegetables kind of gal. I would spear the odd carrot or rustle a few peas when eating out, but when it came to eating at home I didn't bother. Then through a combination of growing my own and the never ending cookery programmes which made veggies look good to eat I started trying out a few. Still I tended to stick to the same ones. 

When I went to my son's Christmas Day and his girlfriend presented us with braised red cabbage I politely tried what was one my plate. I was, at the age of 54, a red cabbage virgin! The only cabbage I had eaten previously was white cabbage, and that was in coleslaw or a kebab! Having helped with the prep I knew it had apple, cinnamon, onion and cider so I reckoned it couldn't taste that bad. It was delicious!

So yesterday I bought myself a red cabbage and made myself "redslaw". Red cabbage, red onion, red radish (well the skin is red) and carrot (okay not officially red, so why are ginger people called red heads?)*

*No offence is meant or intended, I have been ginger myself!

I tried it last night with my evening meal, the rest is for homemade burgers this evening. I enjoyed it so much that rather than throw the rest of the red cabbage away (it sits around forever in the fridge) I would pickle it. I took on board the recipe used by A. on Christmas Day and used cider vinegar along with cinnamon sticks, star anise and cloves. I hope it tastes as good as it looks, I'll let you all know in 3 weeks. 

Enough!

It's late, well late for me. I am wide awake after trying to get to sleep for over an hour and a half. I know for some people that is quite normal, but for me it is far from normal. I am one of those annoying people who falls asleep within minutes of my head hitting the pillow. Mike is upstairs coughing, I'm not sure he's even awake still. There's nothing new in him coughing, he's been doing it practically every night since his SCT, tonight though it has reached a point where it is annoying the hell out of me. The noise is compounded by the whistling of the wind, rattling the fence panels outside. I can't shut the window, the lack of fresh air only compounds his cough. My anxiety is heightened to such a point I wonder if I even want to continue with my life. I'm not suicidal, just not sure there's any point in continuing with the life I have. All very confusing. Trapped in a infinity loop. I have to look after him, I love him, I can't keep looking after him, it's destroying me, I have to look after him, even if he doesn't even see my suffering. Will it end?

Waste not....

Oh the hang ups of childhood. I should throw away the "Christmas baddies" and start my healthy eating, but I have never been able to throw food away, even if it is sugary and fatty. For today I will simply tell myself that the last day of the twelve days of Christmas isn't until tomorrow. 

I still have a jar of Danish Pebernødder

Second Christmas.

Yesterday we received a parcel from "The Land Down Under". Toni helped us open it.

She really does like opening presents. 

What's in the box?

Yesterday I left you all with a bit of a teaser, what was in the box?

Birdie kindly suggested that it was Ted 😂.

The present was for me from Mike. Mike had careful chosen the gift and placed it in an old shoe box, sealed the box and then given it me to wrap as he can't wrap neatly. Men!! 😄

On Christmas morning I opened the present to find:

Excuse the trellis in the background, storm Eleanor struck!

Green pixie boots!!!!

Aren't they fab? I love them. I love the colour. I love the fur-effect lining which keeps my feet warm. I love the reference to pixies (one day I will explain the relevance). I like to imagine that Paula would have approved too. 

2018 here I come!

Happy New Year! I hope you all had a pleasant Christmas. It was of course very quiet for us, Mike is still suffering with lack of energy, the sofa is his new best friend. I am doing my best to take care of him. 

Yesterday I deactivated my Facebook account, anyone who failed to give me contact details, or ask me for mine, will only have this blog (if they ever bothered to bookmark it) for news of how I am doing.  Do I feel bad about that? No, just shows how little notice people take of what others say on social media.

So dear bloggy friends, for the next twelve months, you are going to be inundated with all those food / dog / birds / garden / anything I take a fancy to, photos that once cluttered up FB. 

We'll start with a photo of Toni taken on Christmas Day and one of her new friend Ted.