Tuesday, 31 March 2015

Stormy weather.

"March comes in like a lion and goes out like a lamb." Not this March. The weather here is stormy, strong winds and heavy showers. Only a few weeks ago the weather was much more spring-like. It seems according to weather lore that the reverse also applies "If March comes in like a lamb, it will go out like a lion." 

Mike is currently at the hospital having a central line put in. His kidneys are now so bad that he cannot wait for the fistula to be put in. They say that he is on the list for a fistula as a priority, but no further information on when. Once the line is in place they will put him on a dialysis machine for two hours. They have to build up the length of time slowly from two, to three, to four and finally up to five hours, the drawbacks of being the size and weight he is. Five kilos lighter and it would be four hours three time a week.  

The weather certainly matches my mood swings. The swing from relief that something is finally being done to try and improve Mike's health across to upset that we find ourselves in this position at all. Anger that the kidney problem seems to be completely separate from the myeloma swinging to relief that the myeloma seems to be quiet for now. 

It is going to be a difficult few months (hopefully only a few months) with Mike having to spend so much of the week away on dialysis, especially if the weather improves and Mike has to spend his days inside. 

So today I am baking, baking up a storm. Cakes, biscuits, meringues custard tarts. You name it I'll cook it. Only one problem, I'll end up eating it all myself!  

An afternoon update: 
The cooking was a complete failure. Nothing turned out right. Then to top it all Mike sent me a text saying the hospital had called and told him his fistula appointment is Thursday at 7 a.m. So not only am I a failure at cooking, but also I now look foolish with my earlier post. Life sucks sometimes. 

Monday, 30 March 2015

Birdie's pain.

Today Birdie wrote about her empty nest syndrome. She isn't alone, I too feel her pain. A few weeks ago I invited my youngest to come round for pizza. We finally agreed on 29th March as between us we had various clashes in our diaries (well I had one, she just wasn't available.) Yesterday I woke up full of excitement that I would get to see her for the first time since she collected her birthday card on Jan 7th. Anticipation that I might get to see and hold my little granddaughter. At noon I sent her a text confirming she was still coming and to check what pizza her and her boyfriend wanted. She didn't reply, finally after sending a message to his phone at 3 o'clock she got in touch, she had forgotten. She couldn't make now it as it was too late, she'd got to bath her daughter soon. She will message me at some point when she can find time for me. 

I miss them all so much. Five babies all gone, five meals I no longer cook, millions of cakes that never get eaten, cast aside for their independent lives. May be next time my youngest wants money I'll tell her I'm too busy. 

Why do all the other moms on FB have perfect children who visit every weekend and bring them presents?

Wednesday, 25 March 2015

Ssh.... Don't say it!

Before you say it I know it isn't the 21st but I couldn't resist sharing this photo with you all. 

It is a courgette or a butternut squash..... I don't actually know as I forgot to label the pots. Only time will tell.

The sun is shining and Toni has found herself a sunny spot, better than the hail we had yesterday.

Spring seems to be on its way. 

Saturday, 21 March 2015

21st Century Garden March 2015

As promised I bring you photos of my garden. To be honest there isn't much to see yet, but isn't that half the fun? A six month or so journey to see what grows and what doesn't. 

So far the only real sign of life from the fruit trees is courtesy of the pear. The blossom buds are on the verge of bursting open.

We have improved around the pond, are are waiting for the clematis plants to frantically climb the trellis.

We have added a gooseberry bush to fruit corner and thinned out the raspberries.

The vegetable patch is bare, although that strip of soil to the left of the photo has onions and carrots sleeping below its surface.

The only real colour comes from the primrose tubs in the front garden. 

In trays of compost on window sills and around the house we have sown tomatoes, peppers, aubergines, peas, butternut squash and courgettes. Hopefully next month we will have lots more photos to share. 

Saturday, 14 March 2015

The Waiting Game

Good news, Mike was discharged Thursday evening. It was good to feel him next to me in bed, I feel much happier when I can hear him breathe. He came home with a bucket full of tablets, vitamin D, calcium, magnesium and blood pressure meds. He says he feels great, well much better than last Tuesday, I don't think he'll be running any marathons though. 

We are just taking things easy, pottering around, waiting for the hospital to make the next move. Waiting for the fistula appointment. Waiting to see if Mike's bloods show an improvement in the levels of his blood chemistry, some going up, some coming down? Waiting to see if Mike can actually wait for them. 

Today we will start to sow the seeds for this years vegetable garden. I will be boring you all once more with my 21st Century garden photos again soon!

The quince is in flower.

Thursday, 12 March 2015

Me, all me.

This blog entry is a completely selfish one. Some of it might not make any sense and some of it might be taboo. My head is so full of s*** and the flies buzzing around are driving me crazy. So the following post is my attempt to muck out and is possibly totally random. 

I realised yesterday evening as I sat alone watching the TV that this is exactly what my life is going to be like when Mike is gone and I don't like it. People try to be nice and say things like "he'll be out of hospital soon", but that really isn't he point is it? Mike has Myeloma and now no kidneys to speak of. The life expectancy on dialysis is 5 -10 years, it's really a case of which will get him first. 

The grieving process is a terrible thing. So painful at the start, but as everyone knows, over time we are able to think of someone we have loved without the tears always flowing. For me that grieving process was begun with Mike's diagnosis. Every time he has been really ill it is as if I have been told again of his possible demise. Unlike somebody who has actually lost their loved one I cannot begin to move on, Mike is still alive, could be next week, a year, 5 years. We are all mortal, but most of society don't ever think they are going to die. I don't want to die, I don't want Mike to die, but after 5 years of being stuck at the same stage of grief I do feel as if I need a break from it. 

Like I said, I'm not sure whether I am alone in my state of limbo, whether other carers feel the same or if any ever have. I'm not a bad person really. I want them to cure Mike and give me back the man I married (yes I know he was already faulty when I married him!) I'm tired of sitting on this cliff edge, I hate heights.

Wednesday, 11 March 2015

Bad nurse, good nurse post 2.

Just back from visiting Mike. The difference from yesterday is amazing. His sickness is under control and the new ward are looking after him much better than the previous one. 

Mike is much chirpier and in his element as the chap in the bed opposite was told only yesterday that he has MM (hence the kidney problems). Mike has been telling him all about the wonderful staff on CHU (the chap is waiting for a bed so they can transfer him.) They have started the guy's treatment, something else Mike stuck his nose into as the nurse couldn't believe she had to give him 20 dexamethasone tablets this morning, she was sure they must be in a bigger dose than 2 mg, Mike told her they weren't and of course when she looked them up in her drug book Mike was proved right. 

Mike loves sharing his myeloma journey with anyone who will listen. In fact the story he often tells now has a life of its own, he misses out bits and jumbles up when things happened. The general gist is right though. 

I don't think Toni likes me leaving her alone, the second I got back and let her out she decided to take a dirt bath! 

Bad nurse, good nurse post 1

I should have updated the blog when I got back yesterday, but I didn't have the emotional energy to cope with typing out the words. So today you will probably get two doses of Lorna drivel.

Let's start with an update on how Mike was yesterday. I would suggest that if you are eating while reading that you might want to come back later. 

Mike sent me a text saying he was feeling really sick, (he has been saying it more and more lately) he had been asking the staff for something to help but of course they are powerless to do anything until a doctor has prescribed it. The doctors of course don't even do their rounds until after 10. Even when the docs had seen him, the anti-sickness that Mike insists works had to be ordered in. So when I arrived for visiting time Mike was still feeling very sick, he was actually in the process of retching up green water as I walked in. On his table was another two bowls of green liquid which had been sitting there for quite a long time. As the one nurse came to look at Mike's chart I asked where I might get some clean ones as Mike had used them all. She huffed, plonked the bowls one inside the other and stomped off, returning with a pile of ten sometime later. Eventually the drugs turned up and a different nurse came and gave Mike his anti-sickness. After taking the tablet Mike just lay back down and I don't think I got more than another few words out of him. 

For me it is so frustrating to have to walk to the hospital (20 minutes or so) only to sit looking at him for an hour and a half and then walk back home. Selfish? Probably, but I feel all cared out. Mike has been ill for what feels like a year, not Myeloma ill but just a constant nagging not right, having me run round after him ill. He has had sudden bursts of energy and gone out to dig the garden but that exertion has then led to a spell of exhaustion. So I have decided that I will make sure I visit him every afternoon, but unless I can get a lift, I am not doing the evening trip. (Cue the bad cop remarks!)

On the subject of being selfish I decided as I was leaving to pay Greggs (why is there no apostrophe?) a visit. (For those outside the UK Greggs is a chain of shops that sell bread, cakes, warm pastry products and sandwiches.) There is a store right in the centre of the hospital. This is what I bought:

I ate it after my dinner. Having dealt with 5 sick kids, nothing puts me off my food!

Later yesterday evening I got a call from Mike to say they have moved him to the Renal Ward where they have more of an idea how to cope. Fingers crossed that things will start to move forward now.

Tuesday, 10 March 2015

Good cop, bad cop.

We all know the scenario, bad cop threatens, good cop offers coffee and cigarettes. Like the constant yin yang of the world there is always the pessimist to counteract the optimist. 

When my children's father left me with them in 2000, I was always the bad cop, not only in their eyes (anyone who has had to explain to a 14 year old that they can't go out with their mates late on a week night will understand) but also to past friends who had been left in no doubt that the marriage failure was my fault, he'd never leave his darling children if he didn't have to get away from me. I lost count of the number of people who would stop me in the street, having heard of my plight, only to say how they couldn't believe it as he was such a lovely man. 

Nothing has really changed, I'm still the pessimist, the bad cop, 

Mike woke yesterday feeling really rough, we had been told of the symptoms that might accompany his kidneys completely failing and some of them certainly fitted the bill. So Mike called up the Renal Unit and they got him to pop in for a blood test. His kidney function is now at 7% a drop of 6% in only 4 weeks. His HB was at 91 (they've decided to drop the decimal point) and although hospital policy is no transfusion above 80, Mike is so ill below 100 that he has often been given a top up.

Now you would think given that Mike's kidneys are stuffed that they would be urgently thinking about sorting out the dialysis. Nothing of the sort. The stupid (and I mean REALLY stupid) doctor who was in charge of Mike yesterday seemed more bothered that his calcium was low and that he needed to stay in for calcium injections. The fact he still hasn't had them says a lot. Mike's platelets are below 100, but the doc had prescribed Clexane injections (blood thinner), I'm not sure that would have been such a good idea given Mike's impending surgery, But the final straw was the potassium tablets that he had been prescribed, Mike was told by his Renal Consultant in no uncertain terms to aim for a low potassium diet. Mike reckons he never even read his notes.

I'm sure I don't have to tell you all just how upset I am. 

Of course last night on Facebook Mike just told everyone he is in for a blood top-up, the good cop strikes again.