The Rik Basra Leukaemia Campaign

Pass It On

Yesterday I took part in Rik Basra's dynamic Pass It On Campaign. Before I talk about our excitement at collecting the flag from the Leicester Fire Brigade, I shall explain a bit about the campaign.

Every year, 2000 people in the UK need a stem cell transplant to help them to battle against blood cancers but suitable donors are often hard to find. The Rik Basra Leukaemia Campaign has organised a month-long event to encourage people, especially from minority groups, to sign up to the Anthony Nolan Bone Marrow Register.

A flag is being ceremonially passed between Leicester groups by members of the Leicester Fire Brigade. It is covered with signatures of all those people who have registered and, when the project is completed, the flag will be displayed at the Leicester Royal Infirmary Cancer Unit. The photographs below show myself and Miriam, Chair of the Leicester Progressive Synagogue, collecting the flag. The firemen made quite a display of passing it on to us with ornamental firehoses playing and a huge crane ladder.

We were on the balcony watching as the flag swung into the air and into our hands. (That's me with the yellow jumper on.) It was all very exciting.

We then took the flag back to the Progressive Synagogue where a small but enthusiastic group of supporters turned up to register and add their signatures to the flag. 

Of course we would all willingly have signed up too but for the age restriction of 16 to 30. As Miriam pointed out, even our children are too old to contribute! That hurt, but at least we were able to do our bit to spread the word.

You can find out more about Rik Basra and his campaign at his webiste, The Rik Basra Leukaemia Campaign

Bleak Mid-Winter

It’s been a week of two halves [and I thought I’d explain why I’ve not been around to visit many blogs this week.]

On the bleak side Mr A has had a bad attack of flu. His temperature soared to scary heights on Tuesday. His resistance has never fully recovered from the stem cell transplant two years ago and so any attack like this has to be carefully monitored. Thankfully the antibiotics have kicked in and he’s slowly recovering.

On the bright side there have been lots of Chanukah celebrations, donuts and latkes to eat [traditional Chanukah food - I’ve explained why at the bottom of this post] candles to light and parties to prepare and organise.

And this morning the changing view from my Writing Den window reflected my week’s two halves.

A frosty -4 degrees   :-/

And then the sun came out   :-)

[Donuts and latkes and all things fried: In the year 168 BCE the Jewish Temple was seized and defiled by the enemy. There is always a symbolic light burning in the Temple but in those days each jug of oil lasted for only one day. During the siege that one jug lasted for eight days. This is why we eat fried food during Chanukah, to remind us of the miracle.] 

A reason for blogging

Some people blog to promote their writing and I’ve mentioned before that I wouldn’t have got the commission to write my Children’s History of Leicester had it not been for this blog.

Some people blog because they’ve got something to say and want to spread their words far and wide and you only have to check your stats to see how well blogs can do 'far and wide'. Here is a copy of my stats graph showing the location of this week's visitors:

United Kingdom – 264

United States – 203

Germany – 39

Russia – 36

Netherlands – 16

Canada – 13

France – 13

Australia – 8

South Africa – 5

Japan – 4

It’s pretty much the same each week, give or take a few countries, and I often wonder who these visitors are, why they came, and whether they found what they were looking for.

I did have a specific reason for setting up this blog and it wasn’t to promote my writing. It was to see if I could find others whose lives have been affected by Amyloidosis, by chemotherapy treatments and stem cell transplants. It’s not that we never meet other Amyloidosis sufferers. We go each year to the Amyloidosis Awareness Day run by Myeloma UK and Mr A has to have a two-day check-up twice a year at the specialist unit at London’s Royal Free Hospital so we get the chance to compare symptoms and treatments but I still feel the need to talk with others who understand when I ramble on about Lambda and Kappa Free Light Chains, Nephrotic Syndrome, Amyloid loads, not to mention all the drugs.

Mr A was diagnosed with Amyloidosis in 2008. I began my blog in 2009 and my first ever blog post says it all really. My blog writing style and presentation may have changed but unfortunately the Amyloidosis hasn’t. The levels were knocked back by the stem cell transplant in 2010 but we’re anxious that they’re starting to rise again. Maybe it’s a blip. Maybe things will stabilise once more but if anyone reading this is having similar experiences, we’d love to hear from you. Somehow, every now and then, it just helps to share the load.

... And that's my reason for blogging. What's yours?

The Final Stone in my River...

…and a bit about the family too

This morning I placed the final small stone into my river. I did it! I completed the River of Stones January 2012 Writing Challenge. Some days I had to root round for an idea for my small stone while other days a small stone appeared on my computer screen without hardly a thought.

My final ten stones are listed out at the bottom of this post and, as with my earlier posts, I’ve selected two that hold a special meaning for me. This time the selection was easy and it’s no surprise that it’s all about family.

Odd to begin with a failed stone but interesting that the more emotionally involved I was to the stone, the harder it was to find the words to express exactly what I felt.

A failed small stone. I can’t find words to describe the aching tiredness in my body after an exhausting weekend with my post-operative daughter.

Just over a week ago my daughter had an op as a day patient at her local hospital. She was still very much under the influence of the anaesthetic for several days afterwards and needed a lot of t.l.c. She was hoping to bounce up and be back at work by now but, as with many things, it’s not been as straight-forward as we expected, although but hopefully she’s now on the mend.

My other special stone is no surprise.

A first. My little grandson said, “Here yar Mamma” and gave his dummy to the phone. He called me Mamma and it melted my heart.

He’s only 22 months old and I thought for a start he was talking about his Mum but he then said, “Mummee car.” So I’m Mamma. That’s so cute except that after I’d been talking to his Dad for a while he shouted “Bye bye Mamma” and waved at the phone.

Diabetes update: I mentioned in an earlier post that my grandson had been diagnosed with Type 1 Diabetes a few months ago. It was a great shock to all of us, not least because he’s so young, but now things are settling into a routine and, although his levels are still up and down, he’s coping really well with his new regime, including his four injections a day! 

Some of my blogger friends have been asking how Mr A's health is these days. Thank you for asking. He has fully recovered from the stem cell transplant and the levels in his blood are, thankfully, stable right now. We're keeping everything crossed.

My final ten small stones:

22.1.12  A failed small stone. I can’t find words to describe the aching tiredness in my body after an exhausting weekend with my post-operative daughter.

23.1.12  The dunnock knocks leaves from the gutter seeking out insects that had mistakenly preserved their juicy bodies for his breakfast.

24.1.12 Raindrops hit the puddles sending circles ever outwards, moving too fast for me to see, but I can hear them on the conservatory roof.  

25.1.12 T-shirts with bows, sequins, ribbons or stripes.Trousers straight or boot leg, on waist or hips. So many choices and now I’ve spent too much!

26.1.12 The frozen lump of beige soup softens in the pan. I take a taste, still can’t identify quite what I put in it but it’s surprisingly tasty.

27.1.12 Firm, white, shiny eggs in the bowl. I press down with my fork. Yolk appears, mayonnaise spreads. White and yolk mix. Egg sandwiches.

28.1.12 I stand in the dark at the landing window. A familiar silence surrounds me. At a nearby house lights shine, people chat, children play. My silence suffocates.

29.1.12 A first. My little grandson said, “Here yar Mamma” and gave his dummy to the phone. He called me Mamma and it melted my heart.

30.1.12 I run wet hands across cold clay. It softens and shifts beneath my fingers, warming to my touch, gently inviting me to mould it.

31.1.12 I wake to the perfect pitch of a blackbird greeting the morning. I smile even though he’s really issuing a warning, “My territory!”

For those who have missed my earlier small stones, I've poured the whole River onto their own page. Please click on the River of Stones tab on the green band at the top of this post.

More Needles than a Hedgehog

A nurse came to the house today to teach Rod how to inject himself. It’s all to do with his low kidney function. He’s got to administer weekly jabs of EPO to boost his red blood cells. But that’s not all.  Two weeks ago they gave him all his childhood injections at the hospital. At the same time they started him on a twice weekly course of B12 jabs... and I’m not even trying to count how many times they keep taking samples of blood to ‘see how it’s all going’.

I decided to use a picture of a cute hedgehog here rather than a not-so-cute hypodermic needle.

This time last year he was preparing himself for a seven week hospital stay which was to include a ridiculously high dose of chemotherapy, a stem cell transplant, four weeks in isolation and a period of kidney failure. The doctors are pleased with the way his Amyloidosis has responded to this onslaught. The levels of nasties in his blood have reduced considerably but every time I look at him I have this picture in my mind of a man leaking water...

   

A half-perfect mini-break

We’ve been away! (Quite an event for us these days!) It was only a tiny mini-break but it was much needed and we hadn’t been on a ‘daughter visit’ for ages, so as Rod had a hospital appointment in London, we booked train tickets to London and then on to Hertford (which meant that I didn’t have any hated distance-driving to do.) Daughter had discovered a lovely new B&B in the centre of Hertford so we gave it a try.

Staying in a B&B can be a bit of a gamble. We’ve stayed in some decidedly dark and dingy ones in the past but I’m delighted to say that this was not one of them. It’s called Rigby’s and it’s only been open for a few months. A lot of thought has gone into the design of the rooms. The bed was snugly comfortable with cushions and bathrobes... 

...and a luxuriously spacious bathroom.

There was a fabulous view from the window...

...and we ate our freshly cooked breakfast in a period dining room overlooking the garden. (Whoops, I'm starting to sound like an advertisement now!)

Walking round Hertford was like being in a pretty seaside town. Even daughter’s cat was on her best behaviour, deigning to sit on my lap (I’m truly honoured, says daughter!) What a perfect mini-break... well half-perfect anyway.

Rod’s appointment was at Moorfields Eye Hospital. His eye sight hasn’t improved since he was on his second course of chemotherapy over a year ago. He’s still not able to drive. His hopes were hanging on the London Consultant suggesting a cure but sadly nerves in his eyes have been damaged and apparently there is no cure. It’s a case of coming to terms...

...but things could be worse. I may hate distance driving but at least I can drive and I did just that as soon as we arrived back. During the train journey home we realised that Rod hadn’t had fish and chips since all those food restrictions that had accompanied his stem cell transplant last August, so I drove straight round to our local chippie and we were soon scoffing fish, chips and mushy peas accompanied by two big mugs of tea. Perfect!

   

Was this the last train out of London?

It was going to be a bit of an outing… well not much of one to be honest, but two days of tests for Rod at the National Amyloidosis Centre, at London's Royal Free Hospital was as good as it gets these days. It was the first time Rod had been out since his stem cell transplant four months ago and so, if nothing else, we were planning to include a bit of window shopping in the new, shiny St Pancras Train Station on the way home. 

Fortunately the consultation at the end of Rod’s two-day test marathon was good. He is progressing as well as can be expected. The statistics show that the stem cells have just about done what they were meant to do. All we need now is for him to get stronger and put on a bit of weight which will, the consultant assured us, happen all in good time. 

There were light flurries of snow as we shivered our way from the hospital but at St Pancras 'cancelled' signs screamed at us from the departure boards. This was no time for window shopping. We joined the mass of panicky travellers and wedged ourselves onto what, according to the information displayed, was the only train heading to the East Midlands. It was going to Sheffield to be precise, with Leicester as its first stop. 

The journey was beautiful, white fields lit by dazzling sunshine, but by the time we reached Leicester it was snowing and as we alighted from the train we heard the announcer breaking the news to the remaining travellers. The train was no longer going to Sheffield but would terminate at Derby. We’re home now, heating on full blast, cuddling hot mugs of tea, but I keep wondering what happened to all those people who thought they were on their way to Sheffield.

  

Almost home... but it’s Bank Holiday Weekend

Rod is recovering from his stem cell transplant. He’ll soon be discharged from hospital but not while he has a Hickman line in. It’s yet another source of infection and this is something he must avoid with his present low levels of resistance... but it’s Bank Holiday weekend which means that the lines can’t be taken out until Tuesday so they allowed him home for the afternoon as long as he was back by 8 pm, a bit like being a prisoner out on licence.

Rod’s resistance is so low that I’ve been given a long list of dos and don’ts regarding cleanliness and food hygiene. It’s scary but when I got up this morning I only had to disinfect the door handles and brush the dog to put the finishing touches to my newly super-clean house. All was going well until I stepped into the downstairs toilet. Water was dripping from the hand basin. I tried to phone the plumber... but it’s Bank Holiday weekend and there was no reply so I decided to tackle the leak myself. How hard can it be to tighten a nut under a tap? I found the nut. No problem. I turned it and... OK, so I turned it the wrong way and once the water started to pour it was impossible to get a grip on it with wet fingers. Thankfully a kind neighbour came round with his toolbox, fixed the leak and I was able to finish my cleaning and get to the hospital in time for Rod's 'day-release'.

Rod is very weak and has by no means recovered from the treatment but today he had two good meals, he sat in the conservatory and admired his garden (which fortunately is still surviving) and he was reunited with the dog. Josh-the-dog has a manic streak. When the kids come home to visit he does crazy circuits, the sort of circuits where back legs overtake front legs with hilarious consequences. It’s been almost four weeks since Rod went into hospital. When we arrived home we braced ourselves for a daft dog explosion but Josh didn’t move. He stood and stared and then he pressed his head against Rod’s legs. Rod sat on the stairs. Josh laid his head on Rod’s lap and there they sat. If dogs could cry Josh would have been shedding tears of relief. Dogs can’t cry but we can... and we did.

Hospitals and Wormeries... Aaagh!

Rod will have been in hospital for three weeks on Tuesday. They said it would take three weeks for the entire stem cell transplant procedure, but they didn’t reckon on the chemotherapy sending his kidneys into hibernation. It would seem that the kidneys are lazy organs. That’s what the specialist said, and now they need to be coaxed into working again. The doctors are hoping to avoid dialysis because of the risk of infection but the machine is all set up and ready beside his bed just in case.

While he’s in hospital I’m in charge at home. I’ve managed to get the recycling sorted. The composting regime is easy but I made the mistake of buying Rod a wormery for his birthday earlier this year. A colony of worms is one responsibility too many. Those who know me well, know how much I loathe worms. If I touch a worm while I’m gardening the entire street knows about it but I overcame the fear. I had to. Rod’s wormery was letting in water. Some worms have drowned. I was mortified. I may not like them but I didn’t mean to kill them. The main problem is that it will not stop raining! So I’ve turned the mixture to let in some air. I’ve stirred in paper and oats to dry them out. Today I moved them all into the shed... without screaming once. Who’d have thought it?

Not all of my additional responsibilities are yuk, for example taking Josh-the-dog for his evening walk. The evening walk was always, always Rod’s job but I’m starting to quite enjoy it... if only it would stop raining! It hasn’t stopped raining since the day after Rod went into hospital. He’d set up an elaborate array of watering cans etc to make it easier for me to water all the pots but I haven’t had to use them once. I’m starting to wonder if someone up there has noticed the title of my blog and decided to be ironic!

Rod is still not able to eat solids, his kidneys are still struggling, his resistance is rock bottom because of the high-dose chemotherapy and he’s very weak but he is really hoping to be home by next weekend or the beginning of the following week. I hope he’s not disappointed. I guess you’ll all be relieved too because it’ll mean that I’ll stop moaning on about hospitals and treatments and start talking about something more interesting instead so, for all our sakes, here’s hoping.

...and now I’m writing in a downpour

I may have mentioned before the reason for the name of my blog. Bear with me if I’m becoming repetitious. It’s not old age so much as stress... I hope. I’m writing in the rain because Rod has been heading for a stem cell transplant since I set this blog up last year, but right now the blog should be called ‘writing in a downpour’.

This week has been grim. Rod has been on morphine most of the time. Visiting times have consisted of me sitting staring at him... but yesterday when I arrived he was sitting up sipping a cup of tea. He asked normal questions like ‘Has the Bank Statement arrived?’ It was brilliant. He’s not through the worst quite yet. They’re concerned about his kidneys and he may have to go onto dialysis for a few days but he’s talking and thinking. He’s more like my Rod.

I’m feeling overloaded at the moment. I’d like to wrap myself in fluffy pink candy floss and not have to face the world but it looks like the world needs me. Josh-the-dog had his stitches out on Thursday after a lump (a nasty one as it turned out) was removed from his thigh. It’s healing well at the moment but he’s still consigned to the bucket when I go out and at bedtimes because he wants to pick the last few scabs off. You can’t blame him. There’s something irresistible about a crunchy, black scab. But he’s happy and eating and roaring round the park after his ball so fingers crossed...

What’s more I am truly writing this in a downpour, not just my metaphorical one. I now know why my dog-walking coat is called shower-proof and not water-proof. It’s a horrible feeling when icy rain trickles down your back. Still, at least the weather has provided me with one positive. I’ve not got to water the garden while Rod’s in hospital. In fact, it’s all looking green and lush and I know he’ll be delighted when he’s sitting right here looking at it... and so will I.

Hospital Visiting is Exhausting

Having someone ill in hospital is hard enough without having to find your way to the appropriate ward, work out what you can and can’t do as a visitor and then, having got all that sorted, you have to think of interesting, uplifting things to say. Parking the car is yet another problem. Our hospital has an almost permanent queue of cars attached to it. With Rod undergoing a stem cell transplant this is affecting me on a daily basis. But here’s the twist. The queue has become a source of fascination and a useful discussion point. Before I explain I’ll give a brief Rod Report for those of you who have kindly been asking after him.

Rod Report: He’s now in isolation as the high-dose chemo (Melphalan administered on Wednesday) has upset his digestive system badly and his blood count is dropping. I’m allowed to go in and see him but I must wash my hands and gel them before I go into and when I come out of his room.

 

They reintroduced his stem cells on Friday but the doctor did warn that this procedure would feel like an anti-climax. Three bags were removed from a huge tank with liquid nitrogen floating around (as I had imagined). Each bag was placed in a warm bath and as soon as it reached body temperature the liquid (red with tiny white dots i.e. the baby stem cells) was fed in through his drip system. They are helping him to fight the chemotherapy but he won’t feel the benefits for some time.

 

He’s very uncomfortable and is on a saline drip because they’re concerned about his lack of fluid intake and the condition of his kidneys. He’s likely to be in the unit for at least another two weeks. We’ve been warned that during this week the symptoms will get steadily worse. I’m trying to busy myself with writing so I’ll get back to my blog now.

 

Talking is making Rod feel sick. I’ve never had a problem generating idle chatter so as soon as I arrive, I start chatting to him... but I keep mentioning food. This is not good. Fortunately I’m sitting on a chair beside the window overlooking the queue of cars for the car park and I can give Rod a running commentary about the many and varied quirks of queuing drivers.

Here are just a few:

‘Swap the driver’ These people must be first-time visitors. The regulars know that the one with the appointment needs to be in the passenger seat so that, after inching along the road for half an hour, they can jump out of the car and run into the hospital (health permitting) to avoid being late.

 

‘The crawler’ Some drivers won’t pull forward when a car goes through the barrier. They try to play the ‘let’s see if I can keep moving very, very slowly’ game. Please don’t. For those people behind you it’s highly irritating.

 

‘The entrance blocker’ Most drivers leave the orange box areas free for delivery vehicles to enter other hospital gates, but just a few steadfastly don’t. It causes chaos.

 

‘Alternative pick up point’ I’ve done this for quick treatments like blood tests. Rod gets out of the car as I join the queue. I crawl along and before I reach the front of the queue he’s finished and rejoined me. We pull out and the driver in the car behind thinks I’m great.

‘The ignorants’ Every so often a car speeds down the outside lane and swerves into the car park when it reaches the front of the queue. This has happened in front of me on several occasions and it’s infuriating. There’s nothing you can do about it because they’ve got through the barrier by the time you’ve decided to get out and tackle them and you’re left with high blood pressure. At least the hospital has an A&E Department if it all becomes too much.

I know that the official line about hospital parking is that it’s preferable to get the bus but it isn’t, truly it isn’t. When I get out of that hospital all I want to do is to climb into my car and drive myself home. Hospital visiting is exhausting.

Not enough blogging time

I’ve run out of time this week. I haven’t been to visit all my favourite blogs or made my usual blog comments and I know how much comments mean to bloggers. [In fact, some of us can be childishly overenthusiastic about them!] But I have a good/bad reason. Rod [Mr A.] was hoping [we were all hoping] he could avoid having that stem cell transplant that I’ve been muttering on about in my blogs, but the hospital say that it must be the next course of treatment. The amyloids are building up and if left unchecked they’ll damage his kidneys and spread to other organs in his body. He has no choice and so he will be going into the bone marrow unit on 3rd August.

I used to think that a stem cell transplant meant putting something new into the body, much like a heart transplant, but it’s not. It’s a way for them to give him an extremely high dose of chemotherapy. The dose would be fatal without the reintroduction of his own stem cells to help his body to recover. They were harvested last year and are stored at the hospital in what my mind imagines to be a container full of swirling dry ice, akin to something from a Frankenstein movie. Joking aside, it’s an aggressive treatment. He’ll be in hospital for about three weeks and convalescing for about three months. During that time he must avoid infections. He won’t even be able to touch his lovely garden. [I will try to make sure that it still is a lovely garden when the hospital gives him permission to dirty his hands again but I’m no gardener. Truly I’m not.]

And so we’re going to go out and about this week. We’re going to spend time with good friends, visit exciting places, keep busy and have fun. I won’t be around much in blogland for the next seven days so I thank you in anticipation [that’s a lovely old phrase, isn’t it] for your visits and your comments. Once he’s undergoing treatment I rather think I’ll be visiting you all quite a lot.