Thursday, 30 April 2015

Baby it's cold outside.

Just when we thought that Spring was going to be more like Summer the good old British weather decided otherwise. I'm not saying it is actually freezing, it is just a shock to have to wear a jumper again when only a couple of weeks ago I was in shorts! Some of the plants aren't too happy either, the strong winds have blown the peas over and the heavy rain has battered some of the younger seedlings.

Mike is struggling with his hb again, down to 96 from 106. It seems that the small dose of Aranesp they have finally started giving him isn't enough to keep his hb between the ideal 110-120. That 10 might not seem a lot, but it makes a real difference to Mike. The difference between being able to walk up and downstairs, or having to crawl / send me.

I am going to try and stop myself wallowing in self-pity. I'm not sure how well I will get on, you will all have to be patient with me. Life is tough at the moment on practically every front, and some of the problems are compounded by arguments about the problems lol. 

I always feel I need to put a photo, so today's random photo is:

An itinerary of events for the coronation of Queen Elizabeth II from North York in CANADA. It was at the bottom of a box I bought from an auction a couple of years ago! 

The Township of North York is now just an area of Toronto, like many small towns and villages around Birmingham and other large cities, it has been swallowed up by urbanisation. Such a shame.

I think I'll do some baking to cheer myself up!

Tuesday, 28 April 2015

A Tenebrific event

I have found a new word to describe my sadness "tenebrific" it comes from the Latin and means producing darkness. My youngest daughter is the source. Last Tuesday was my granddaughter's first birthday. I sent a card, but kept her gift here. It is still here. 

On Saturday my other two daughters came round for a visit while Mike was having his dialysis. The eldest had made a special birthday cake and had travelled up to celebrate her niece's birthday. I talked to them about how sad D. is making me. How upset I am that I have only seen my granddaughter three times. How I had invited her round only for her to forget, promising she would give me another date that was good for her. That was a month ago. 

On Saturday afternoon after, the party at my ex-husband's second home here in Wolverhampton, my son and daughter-in-law came to visit. Whilst they were talking to me and Mike I saw my d-i-l sending photos of their niece from his phone to hers. They didn't offer to show them to me, I think they had been told not to. 

It was nice to see three of my five children, the youngest son is too far away to pop down for the afternoon. But the feeling of happiness that I should have felt was over shadowed by the tenebrific rejection of my attempts to make things better with my daughter. 

I keep being told that she will eventually soften or that my granddaughter will make her own mind up when she is old enough. I'm not sure my heart can wait. 

Tuesday, 21 April 2015

21st Century Garden April 2015

Yes it is the 21st again. I haven't blogged for over a week, there hasn't been much new to tell you all. Mike is settling into the early morning routine, it does seem to help not losing a whole day. It has meant I have had a lot of time pottering in the garden, although it doesn't seem to make things grow any quicker!

Nature will have her own way and despite an equal amount of love and attention the apple tree refuses to blossom, although it isn't due to appear yet, there is no sign that there is going to be any flowers yet again this year. The plum and pear are both resplendent, the pear especially so. 

The pear and plum.

Plum blossom

Pear blossom
 The apple isn't alone in being bare, the fig has yet to wake up properly from its winter slumber. 

Fig 2015
It was pruned back in January, but as you can see it is certainly much bigger than when we planted it back in 2011. 

Fig 2011
The vegetable patch now has some green, and not just weeds, but peas, onions, radishes and somewhere in the weeds carrots. They really are tricky things to spot until their feathery leaves are well established. 

Broccoli waiting to be pricked out.
In seed trays around the house and garden we have cauliflowers, aubergines, tomatoes, courgettes (zucchini), chillies, squash and capsicum peppers waiting for the warmer weather of May. 

Will a bit of luck, who am I kidding, with a lot of hard work and a bit of luck, it is hopefully going to be a good year for produce. Next month I should have a lot more to show you. Hopefully fruit corner will look more impressive too!

Saturday, 11 April 2015

What about if we try this?

It is way too early on a Saturday to be blogging but Mike was up and out the house by seven as we managed to wangle a 7:15 AM appointment for his dialysis. It is a really big deal. When he has the noon slot getting onto the machine relies of whether one is free, whether the person before him took longer than the four hours (various things stop the machine and it has to be started up again by a member of staff), whether the machine has done its forty minute clean, whether it has warmed the fluid up after its clean, whether the air is all out. So sometimes it is two before he even gets a chair (there are chairs in the waiting room but they don't recline). Fingers crossed that when he got there this morning the machine was almost ready for him. The hope is that the dialysis won't tire Mike too much and that by lunchtime he will be done and able to spend the rest of the day getting on with life. 

After the week we have had with Mike's anaemia, hospital Tuesday, Wednesday and Thursday (Tuesday was a fail remember so he had dialysis Wed. and Thurs.) yesterday was heaven. The weather was sunny and the garden a wonderfully warm (19 C / 66 F)  place to sit with our friends Mike and Jocelyn, drink tea and eat ginger nut biscuits (well Jocelyn ate most of them). 

 I can't wait to show you all how the garden is looking on the 21st. 

Wednesday, 8 April 2015

Stuck in the Middle with you.

"Well I don't know why I came here tonight,
I got the feeling that something ain't right,
I'm so scared in case I fall off my chair,
And I'm wondering how I'll get down the stairs,
Clowns to the left of me,
Jokers to the right, here I am,
Stuck in the middle with you."

by Gerry Rafferty / Joe Egan (Stealers Wheel)

I better explain. Mike had a full four hours of dialysis on Saturday, they say it takes a bit of getting used to. By the end of it Mike felt awful. He said he felt as if his haemoglobin was really low, so they checked and it was down to 84 (8.4 in old money.) Last Tuesday before dialysis had started it was at 107 (10.7). Mike felt (and still thinks) that the dialysis is responsible. A doctor came and saw him and arranged for Mike to be given 2 units of blood with his dialysis yesterday. Some of the renal nurses obviously don't know much about the blood transfusion system or its rules as when Mike arrived yesterday there was no blood, they had ordered it on Saturday, failing to say it was for Tuesday, so when it arrived at the hospital Easter Sunday, Mike wasn't there and so 48 hours later it was used for someone else. Rules are rules. Mike was adamant, no blood, no dialysis. His hb is down to 80 (8.0) and he is feeling really rough. He can hardly move he is so fatigued. 

The added problem in all this is that the Renal team say it is his myeloma that is making him anaemic, his platelets and other blood figures have all dropped. His haematology team say it isn't his myeloma but his renal problems causing the lack of red blood cells. So Mike and I are stuck in the middle of two different teams, neither team of nurses understand the other side's discipline and actual consultants seem very thin on the ground, obviously all off hunting Easter eggs. 

As I type Mike is in the dialysis unit, hopefully with a couple of units of nice red blood. I'm off out into the garden, we've had a run of three nice days and I've been pottering while Mike has been lazing around unable to move. 

Busy Bee Lorna.
Of course the real irony of it all is that eventually the jokers and clowns will manage to get their acts together and Mike is eternally grateful to them and at that point I end up looking like a fool as I'm the one who can't keep her cool when they have been refusing to listen to him. 

I think I'll stick to caring for my plants! 

Saturday, 4 April 2015


Fragile, the word that currently describes and defines me. It isn't the rather lovely fragile that is used to describe a delicate piece of bone china, I'm more stoneware than that. Or the petals of a spring flower, when I was nine my nan told me I had thighs like tree trunks. 

My fragile is more the mental kind, one careless word and I might shatter into a million pieces, I'm already in about a hundred. My "negativity" is bringing Mike down. The Mike who now feels so much better (everyone celebrate because I can't!), who now feels like himself again and who can't understand why I don't. 

The atmosphere has been at times "prickly" over the last couple of days. Things have been said in anger that I will not repeat. 

Mike is having another dialysis session, four hours on the machine today. If Wednesday is anything to go by he'll be home at 7:30 this evening having left at 11:45 when his transport arrived. No different to him going out to work, except he doesn't get paid (Mike's quote not mine.) He tells everyone on FB that he is getting along okay (which he is) and that I'm struggling (which I am). It is treated like a case of man 'flu almost. Something that will soon be gotten over. That's the way Mike sees it, three months of going to the hospital three times a week for dialysis. Then, after a bit of training, the rest of the time DIY at home to suit him, which is fantastic compared with the hours at the hospital. Bad cop sees something different. I cannot articulate the way I am feeling inside which is frustrating. 

I'm depressed, suffering from anxiety and a guilt that I can't be happy that Mike is feeling better. 

Thursday, 2 April 2015

Taboo too.

The one thing that never seems to be discussed in the various support groups is intimacy. I'm not asking for a blow by blow (if you'll pardon the pun) account of other people's moments of intimacy, but I do think we all ignore the issue. During the various stages of disease and its treatment there are obviously times when even lying next to the person you love is pretty much impossible, when it is simply too painful. When tempers are frayed due the strain of dex mood swings, lack of sleep and the varied reactions and emotions of being told there is something seriously wrong. I guess couples find their own way through it all, or do I just imagine they all do whilst I struggle? 

For what seems a lifetime now (probably six months) Mike has been suffering terrible bouts of cramp, not little cramps, but scream the house down cramps. Moving his head sent his neck into spasm. His hands contorted themselves into strange forms. The simple act of hugging became a minefield. We've done the tell each other that they are loved, but I have missed just being able to hold his hand or hug him. Only last night he woke me in agony. Hopefully the dialysis will eventually sort them out, if they are the fault of the kidneys as the experts believe.

Today's procedure of course will add to the tale of woe short-term. Mike's left arm is going to be painful for a while so no hugging with that. He currently has two large tubes poking out just below his right shoulder, so no putting my head there. In fact I have no shoulder to cry on and no arms to hug me better. 

All of the above should improve with time. Time heals all they say, I just hope it hurries up. 

Wednesday, 1 April 2015

Hit by an express train.

When Mike was diagnosed all the way back in 2010 I coped ninety percent of the time. When he was on dex I mostly coped, except when I got shouted at for being nice. When Mike was having his SCT and I had no bathroom and I was travelling for two hours to see him I coped. When we were told in January that Mike needed dialysis I thought I was coping. 

How wrong can you be. Yesterday afternoon I was hit by an express train of grief for the life we are never to have. The years we have already been robbed of and the future we won't get. Mike doesn't know how to cope with me, he tries to fix it by saying he'll refuse dialysis, as if that would make it any better. There is no fixing my grief, it doesn't work like that. "I'll have my line taken out!" The line doesn't bother me, it's chunkier than the last one, think drainpipe instead of waterpipe, but so what! 

Mike is currently at the hospital having another three hours of blood cleansing. I'm trying to stay calm and not cry. Heck I cried so long and hard yesterday I think I'm so dehydrated nothing would come out any way!