Goodbye

Well dear readers it is time to say goodbye. As the title says, this was a blog about OUR journey with myeloma, there's no longer an US. This space was Mike's as much as mine, although he didn't actually post in the later years. Mike's journey with myeloma is over, so mine is too. With Mike's death I had to start a new journey, without a map, without a Sat Nav and without Mike's nose ('I'm following my nose' was often said in the car.)

My new journey can be found here.

Thank you all for the love and support you have shown over the last nine years. They have been some of the hardest and at the same time best years of my life. I wish you all well for the future. 

Lorna x x x

I miss you.

I miss you darling. I miss your voice, your laughter, your smile, your smell. I miss seeing your face when I wake up every morning, I miss you saying you love me when I go to sleep at night. 

I cling to the words you left for me on my birthday, the card you wrote just days before you died, you knew you wouldn't make it, but the gift you left with the words in that card is worth more than all the diamonds in the world. 

I miss the readers of the blog being able to comment. I miss conversation with people. I miss so much that I can never get back. 

Do it.

Do it, do it now! Write down the things you're loved ones say to you. Get them to write things down, not an impersonal email, but a proper handwritten letter. Capture their image, their voice, their essence on whatever means you can. Keep it safe for the future, but start doing it now. I know you have all heard it before, but please, start doing it now before it's too late and regrets set in.

I deeply regret not having a record of Mike singing to me, I couldn't listen right now I know, but it would have been nice to have it to look forward to. I regret not having his words written down, I have forgotten in my haze of grief all the things he told me before he died. 

After Life.

It is a whole month since Mike passed away, nine days since his funeral. The pain of his loss seems sharper than ever. The adrenaline of the first few weeks has dried up and paralysis has set in. Every plant in the garden, every tin in the the pantry, the cups in the cupboard and stuff around the house all remind me he is no longer here. I have to wear dark glasses in the supermarket, as when I spot food he loved, the tears well up and trickle down my face. I can't bear to watch the TV programmes we once watched together and there seems to be very little else that is watchable.  

People are trying so hard to be kind, I know they mean to try and help, but I don't want to move forward, not even one step. I'm not ready to walk the world alone, it is far too scary and dangerous without Mike. Time and time again I am asked by people if I have a plan, have I set myself little targets? For now just being alive is all I can manage, and some days even that is touch and go. 

I am angry with the world, but unlike the character in After Life, you wouldn't know it. I keep my anger locked up inside, waiting until I can stand alone somewhere and scream. Why me? Why Us? Why Mike? There are so many bad people out there, why not them?

Tomorrow is / would have been our eighth wedding anniversary, I'm so ridiculously sad we didn't get longer. I want to celebrate the nearly eight years of marriage that we had, can I cheat and pretend we made it? Should I buy a bronze (the traditional gift for an eighth wedding anniversary), something that Mike would have loved, something that I can remember him by? 

Alas no one can answer my questions, not unless they are a friend elsewhere. I was forced to switch off comments when I put on the tributes, some people have no respect for the dead. 

Tribute from a far.

We knew this time would come but were hoping for a miracle so that Mike would still be with us, but although he fought bravely it wasn’t to be. He was also praying for that miracle even though things looked pretty bleak, such was his zest for life.

Mike, what can I say? He was one in a million and it’s impossible for me to imagine a world without him in it.

We first met as young kids in 1962 when we lived a stone’s throw from each other in Great Barr and forged a lifelong friendship – one that meant more to me than any other I’ve had.

What you saw was what you got with Mike – he was warm, friendly, humorous, intensely loyal and he possessed these attributes both man and boy – he never changed at all.

I think the only time he and I had a minor disagreement was in those very early days when we were talking football and I asked him what football team he supported, and he said Manchester United.

After I picked myself up off the floor, I counselled him on the merits of switching to West Bromwich Albion and after going to a few matches together as well as training sessions, he was converted.

We went to many matches together in the 60’s – in fact we did everything together – whether it be kicking a ball at our beloved Recreation Ground (nicknamed the Rec), cricket at Edgbaston, fishing at Sutton Park, train spotting at New Street or Snow Hill, and I have fond memories of penny for the guy and carol singing at Christmas, where we would knock on doors and make up the words because we didn’t know them and we’d fall about laughing.

These memories have never left me, and I know they never left Mike either because we’d still talk about them.

I moved to Australia in the late 60’s and we kept in touch for some years and then lost contact until I looked him up on a trip to the UK with my family in the late 90’s. I knocked on the door of the house he lived at all of those years earlier and miraculously his mum answered and gave us his contact details.

Mike came over to see us that night and we had plenty to talk about. All of those years of no contact hadn’t affected our friendship at all – that spark still remained. Mike mentioned this himself when we spoke on the phone a few days before he passed away.

Lynne and I have made several trips to the UK since and one of the highlights has always been to spend as much time as possible with Mike and Lorna.

When we last came over, Mike was quite sick, and our aim was to spend as much quality time with them as we could. Whilst it was a struggle for him at times, he was keen to do whatever he could with us, and we had some great times in places like Liverpool and Blackpool. I found that if I threw him the car keys his eyes would light up – maybe his health was temporarily forgotten about. To say he was a car enthusiast is a major understatement.

Earlier this year we knew that Mike’s health was getting worse and then he confirmed it by phone, but amazingly, he was at peace – I would even say he sounded upbeat.

One of Mike’s passions over many years was to travel to Australia to see us. It never quite happened but in that phone call he said, ‘I’m coming to Australia’. Of course, I said ‘WHAT’ and then he explained that Lorna will be coming to stay with us and has been given permission to bring Mike’s ashes with her. He was excited in telling me about this.

We look forward to Lorna making that trip where no doubt we’ll spend much time talking about Mike over a glass of wine or 3. Lorna, your room is ready whenever you are.

Mike, I said what I felt in that phone call a few days before you passed, and I meant them mate. Thank you for your friendship - it was an absolute privilege to know you and rest assured I will never forget you and neither will Lynne. She also knows what an outstanding person you were.

For one last time, Up the Baggies, Mike.

Your old mate Dave XXXX

A friend's tribute

Mike and I were friends from before I can even remember.  Both of us called Mike.  I'm told we were friends from the age of three.  We grew up a few houses from each other in Great Barr.  We always looked odd together because he was so tall and I was so small.  To anyone who remembers 'Only Fools and Horses', we were like the Driscol Brothers.

We got up to some wild times together, including into our teens and I am very grateful that I just don't remember many of them.  Unfortunately, Mike had a perfect memory.  In recent years he would tell me about the things we did, and I would think 'how embarrassing' and 'please shut up Mike PLEASE'.  He remembered everybody, every place, every occasion in great detail. We were teenagers in the late 60's and early 70's and I cannot even remember going to some parties he talked about.  But we were there.

I remember his first car.  A 3-wheeler he could drive on L-plates.  I remember being scared as he went round corners.  He was never slow at that time.  He made me sit in the footwell because he wasn't allowed to carry passengers on an L-plate.  It just made me even more scared.  If I popped my head up to look, he would push me down again. Then he got his famous Moggie Minor.  Fantastic times when your mate gets a motor.  We loaded up one weekend and went to Lincoln Pop Festival to see Don McClean and Joe Cocker and Slade and Status Quo.   Exactly 47 years ago, and those were the new days of freedom and rebellion and we were there in full swing.  It’s a bit of a haze now, and to be honest it was a bit of a haze then as well.

It was at that time we both discovered girls.  And I am so glad we did.  Girls saved our lives.  Literally.  Mike worked in Birmingham centre and we would always meet with a strange lot of people on New Street in Birmingham, all great characters and so many of Mike's work friends.  They were great times, drinking in The Tavern In The Town, in New Street Birmingham.  We'd be there most nights, normally.  But girlfriends have a way of interfering with a guy's calendar, and so it happened to us, that night, November 21st 1974.  We weren't there in the pub the night it was blown up.  Mike was never a believer in divine intervention, perhaps he is a believer in female intervention instead.

The characters that Mike met throughout life he never forgot and would always mention fondly.  Mike only ever spoke well about people.  I don't know how many noticed that.  He would always talk about people's qualities and never seemed to moan.  You do tend to notice those ways in which close friends are different to yourself.  Me, I loved a moan.  Mike saw the positive.  And isn't that a much needed trait of a West Bromwich Albion fan?  Always looking for the positive.  I became a West Ham fan because I like a good moan.

We lost touch in the family years and getting on with life and careers.  When we caught up again it could have been with happier circumstances considering Mike’s diagnosis.  But the one thing that I saw once more was that same old female intervention.   Once more coming to Mike’s rescue.

Mike and Lorna were a team.  And I witnessed this over recent years.  Mike never ran away from any situation, he never hid.  If something had to be confronted, that’s what he did.  Lorna and Mike together built up their expertise on Mike’s health issues.  It would have been too much for anyone to cope with and it was certainly a challenge for two.  They both became experts in Mike’s needs and treatment.  In particular it has been Lorna’s strength and determination that allowed Mike to carry on for so long.  Year after year they were able to keep life as normal as possible, including their regular trips to see the Baggies lose.

Mike helped EVERYONE.  He never liked to see anyone having a problem if he could help.  I developed my own health issues at a time when Mike was in the midst of his own.  But he and Lorna took me in and took charge and control of the situation.  Mike even marched me to the hospital demanding I receive treatment.   What a great friend. Lorna and Mike helped me recover from my own problems, just as selfless is their nature.  How I wish I wasn’t so helpless in return.  But I’ll remember Mike the way he was.  Very kind, very caring, with great loyalty and immense honesty.  Lessons for us all.

My tribute to my soulmate.

My darling Micky

Today we are here to say goodbye and at the same time celebrate your life. We may have met a bit later than most, but from the second we started talking to each other, I knew that we would be friends for life, and we were. I never expected to meet someone who I felt would complete me the way you did, you were someone who I never had to explain myself to. You were the missing piece of my jigsaw, and I was yours. I couldn’t possibly count how many hours we spent talking in the garden until the early hours or the number of times that we laughed until our sides hurt. We had so much fun even during ill health.

Remember the time we were on our way back from our holiday in Italy, we didn’t want the holiday to end and so we drove to Broad Street in Birmingham and got our party clothes out of the suitcases. Off we went to Brannigan’s nightclub where you went into “play up” mode. You started talking to a hen party who all had Dick Emery vicar style teeth in. I came over and said, “don’t worry, I’m his care in the community nurse!” Everyone screamed with laughter, including you and me.

We went snorkelling in The Blue Lagoon in Turkey. We found a small octopus in the shallow water and followed it around until we were so cold, we could hardly move. When we got out, we discovered we had been in the water for four hours! You loved Turkey with its heat and people. You obviously made an impression as the staff remembered you, every time we went.

Even when you were going through your first round of chemotherapy you had the nursing staff in stitches. When your potassium was up, you dressed up as a tomato, a banana and potato (all high potassium foods). When Liz was promoted from staff nurse to sister, you got me to make you a nurse’s watch and I sewed white tape onto a navy-blue top to mimic the sister’s uniform. Of course, the best laugh of all was what you did on the day of your last treatment. You decided that rather than buy chocolates or a thank you card that you would sing “You’re simply the best” as Tina Turner. Fishnet tights, leopard print dress, blond wig and high-heeled shoes. The consultant saw you from afar and legged it off the ward!

Despite my devastation at your loss, I realise that I am so much richer for having known you. Your kindness and care for me extended so far, that you even made sure you had bought my birthday present and card before you left me. I will never forget you; I don’t think anyone could, you were always so colourful and larger than life.

More anxiety.

The anxiety comes in waves like the grief, the one fueling the other. What would be a minor event, a mere tickle of annoyance to a "normal" person has me hiding under the covers, fearful that I am going to come to harm. As the funeral approaches these events seem to be increasing. So many irrational worries about how I am going to cope. Fear of leaving the house, fear of having to so much as look at anyone else, "do I really have to be polite and shake your hand?". Mike always said I underestimated my ability in social situations, that I shone when talking to people, I don't want to shine, I want to find a rock and crawl under it. 

I know I will get through it, I have my children and some close friends who will support me on the day, no matter what is thrown at me. I know what Mike wanted from me, I know every little detail of what he wanted to happen after his death, the funeral, his ashes. There will be people who don't agree with HIS decisions, it is my task to button my lip and  just carry on doing what he wanted. 

I'm glad we had the time we did to talk about his wishes. I'm glad that he told some of his friends what he wanted, avoiding the awkward situations to come. Mike's strength of character has given me the surfboard that I need to ride those waves, I might just fall off occasionally. 

Side effects.

For me the grief has side effects. The biggest problem for me right now is anxiety. During the first week after Mike's death I phoned everyone, I felt in control and confident. The second week became more difficult as time went on and now as I enter the third week I am so terrified I struggle to answer my own phone, even when I know who is calling, I don't have a hope of making a call out. 

People have started asking me my plans. Am I going to take a holiday? Am I going to get a job? What are my plans for the house? Hang on I'll ask Mike, oh I can't. PANIC!!!!!! You wouldn't believe there is a strong independent woman in there somewhere, she seems to have left the scene along with her beloved Mike. I know people mean well with their advice, but the reality is that I need an adult to take my life over for a while. I feel like a scared child lost in the woods, surrounded by big trees that all look the same. I am anxious about leaving the house, but anxious about being alone. The person Mike thought would help most is dealing with their own grief in the way that best suits them (carry on as if nothing has happened) and they very much expect me to stand on my own two feet when I can barely stand. I've asked them to help me but they say they can't. 

Mike would know what to do.  

Wishes

My darling, 

I had planned to write to you explaining myself, and then I realised I never have to. You always understood me, without me having to explain. Instead I will address this note to the world.

My tears may be drying up, but that doesn't mean I don't miss Mike.
I may laugh out loud, but it doesn't mean I have forgotten Mike.
I may seem to be over my grief, but you will never know how much I miss Mike.

Mike's last wishes were that I wouldn't be too sad, that I wouldn't grieve too long and that I would be happy. 

I'm not there yet, but I am on my way darling.

Lorna x x x

Tears of a Clown

My darling  Mike

Over the last week I have had visits from my kids, Mike C., and Ros took me out last night. Whilst people are around the tears stay firmly put, it is only when I am alone that the torrent begins. No matter how kind people are, the reality is that only you could ever hug my tears away, that it was only ever you who I could truly sob with, without fear of being judged.

The words of the song say it all. I miss you.

Lorna x x x

The dream

My darling Mike

Last night I had that dream. The dream that I assume everyone grieving has. The dream where you weren't really dead. You arrived on the doorstep, furious that I hadn't realised you were still alive. Angry that I had started to cancel payments and tell people you were dead.

I woke up sobbing, a mixture of sadness and hurt. 

I miss you darling

Love Lorna x x x

Grief

Anyone who has lost someone they loved will know what I am going through. The house seems so quiet without his voice and at the same time so full of him and his things that wherever I turn I am jolted by the grief of seeing his shoes, his coffee cup, his coat, all without him. My phone makes a sound and I check to see if it is a text from him. I see something interesting and I turn to talk to him. I want to tell him how Toni was doing her doggie smile as she chased squirrels. I want to hold his hand as we walk around the park. I want the tears to stop, but at the same time it feels like that would be a betrayal. Too soon to stop grieving, too soon to stop wanting him back.

I thought I would leave the blog behind, but a very dear friend suggested I continued to write. The journey isn't yet over. Mike still has a part to play, if only for others to know they are not alone in how they feel in the years to come. 

Goodbye darling.

Mike passed away peacefully holding my hand last night. My emotions are so raw and overwhelming that I wonder how I will survive the pain. I know many have gone before me and survived. I know that many more will follow. In this moment though, it is only ever one's own emotions that matter. 

Goodbye soul mate, I'm now again missing the jig-saw piece that I found when I met you.  

Crazy man

For no good reason other than I can, Mike at our first picnic together. Is is wearing my sun hat and it makes him look like Huckleberry Finn! 

A week on / off.

Don't panic, I'm not about to bore / horrify you all with gory details. No this post is merely an update and a musing on my part.

Mike is almost exactly the same as he was, the only change from the week before is a slight nausea. I'm not sure what we were expecting would happen, the professionals certainly didn't seem to know, we asked everyone we spoke to, and we're still asking. Their reassuring "we've helped patients before" is rather mute when they won't even say anecdotally what is likely to occur.  

The various protocols around who prescribes and who is allowed to collect or deliver the drugs is frustrating at best. The paperwork seems endless, a stock take is done at every visit (I do know why).

Meanwhile the limbo has now spread to my brain, I look at things, and I know I need to do something, and yet I still just stand there staring, waiting for something to tell me what to do. It is a mental paralysis. I have a constant headache that stretches from the base of my neck at my left shoulder to the front sinus on the left, right over the top. 

Life for Mike pretty much continues as before, with me waiting on him hand and foot. I'm left wondering if I might just pop my clogs before he does.

Where's the guide book?

The district nurses are fabulous, but they don't give you a handbook. Call us if you need anything, but how do I know when the right time is? As the hospice nurse said yesterday, "we would all like a crystal ball". If I had one I would know in advance that I needed their help with Mike's nausea or agitation. A handbook would tell me if there is a magic drug that would ease his itching. They are great, but things seem a bit open-ended if you understand what I am trying to say.

Soldiering on. 

Nearly there.

I just thought I would update you all on what is happening. Mike has decided that Sunday will be his last dialysis session. The dialysis doesn't make him feel any better and his body continues to slowly shut down on him. 

Is there anything left to say? I can't imagine that any of you would want to read all the gory details of what happens next week, and so it only remains for me to return to the blog once Mike has gone. I'm sure there will be funny tales about the funeral, insights into the craziness of family and the inevitable turning up of bad pennies, (doesn't every family have at least one?).  I hope you will all humour me for a while after the event, I think I might need a bit of moral support. 

Loneliness

The worse thing about our current situation is the loneliness. No one visits, no one calls, we don't even get emails or text messages. It feels like no one cares, Mike believes they do but just can't cope with the situation and so block it, and us, out of their everyday lives. 

Sometimes the current situation of being alone with Mike leaves me terrified of the future when I don't even have him for company. The reality of course is that I will be free to go out and meet new people, how and where is yet to be decided, there will be plenty of time . 

My days are spent looking after Mike and pottering in the garden. The very changeable British weather makes it difficult as a sudden cold spell after an unseasonably warm spell has the poor plants confused and shocked. It also has Mike struggling for breath as the much needed heating in the house dries the air and the heat outside makes him struggle too, the catch 22 situations of life. 

The boy who cried wolf?

We all know the story about the boy who cried wolf. How eventually all the villagers no longer believed the little boy. Well that is how most people seem to be approaching Mike's demise, he can't possibly be telling the truth, he's just attention seeking, isn't he? 

I had imagined that family and friends would want to spend precious time with him during his last few months, but it seems they either don't believe he has so little time left or they are simply too afraid because of their own emotions. My inner voice is screaming "don't come crying to me when it is too late." 

Just in case anyone doubts what I have been saying, yesterday Mike had to go down to the workshop to help them with some advice on an old Austin Mini they are working on. The lads are all too young to have been trained on how to work on them, and Mike has all the knowledge from years of doing so. While he was sitting there another customer came over and started talking to him. He looked at Mike and his swollen ankles and told him his heart is failing. The other customer is a paramedic and after a conversation about Mike's health the paramedic said he reckons it will be less than a month before he goes pop. 

We're not making it up, Mike certainly isn't crying wolf. 

March round-up.

A quick round-up of the month. Not much has changed. Physically Mike is able to do less each day, it is a very small deterioration each day, but over a month it becomes more obvious. His physical state doesn't of course display itself on social media, and so friends contact me thinking Mike is doing well as he is so "active", the truth is, that with me having to do everything, Mike has plenty of time to post things while I am fetching and carrying. Just because he can rant about Brexit doesn't me he can lift more than the finger he needs to use his smartphone. 

I am tired.

March week three.

This afternoon's sky just about summed up my mood. As hard as I tried, I just couldn't find the daily small moment of joy that has kept me going. A flower, a bird, a funny moment, all escaped me. Like all things this mood will pass. Like the moments of panic, when I am scared I will never cope with life alone, until I remember I coped perfectly well with five children and no man, that I coped when Mike was in hospital and bed bound for a month when he did come out. 

In my head I hear all the cliches that people are prone to recite at such times. I will survive, I will get through this, I will learn to live with the grief, I will find happiness again. 

Mike and I are both coping really well under the circumstances, we are still trying to get a few things sorted. 

March week two.

So a quick update on what has happened over the last week, apart from the arrival of oxygen. We had a visit from a nurse from the local hospice who in turn referred us to the district nurse. The district nurse came on Saturday and had a long chat with Mike while he was doing his dialysis. He said the team would visit Mike weekly, but Mike said there wasn't really any need for that at the moment so they will be calling him weekly instead until such a time as Mike needs them.

At least I now have a couple of numbers that I can call should I need help, although I'm still a bit in the dark as to what exactly I should call them for. The limbo on that front continues. The hospice nurse asked me how I was feeling about it all, and all I could say was that I was used to the idea. I'm not happy about it, but I am resigned to it. 

Mike is using his time to sort out as many things as he can. He has a builder coming on Thursday to replace the doors he took off many months ago (it has been really strange having no door to hide things behind.) He has arranged to have a greenhouse delivered and installed as he thinks it will make me happy, he wants to leave me knowing I am pottering in the garden and growing my own food. He keeps trying to tell me what to do with myself when he has gone, and I keep telling him I will need some time to work things out for myself. I don't want to be rushing into bad decisions just because I am grieving. 

We still laugh at things and I still cry. We're generally happy in each other's company and I'm spending as much time as I can with him, the housework can wait. 

New arrivals.

Yesterday we had a delivery, oxygen for Mike.

This box contains four cylinders which can be carried around in a very fetching black bag. We also have a rather large machine upstairs that compresses the oxygen out of thin air (literally) and then pumps it via a tube to Mike. 

Hopefully the oxygen will help Mike feel more comfortable, we won't be having an open fire though anytime soon and Mike is banned from using the gas hob (he rarely did any way) and the gas BBQ probably isn't a good idea either!

March week one.

Nothing much has changed. The slow decline continues.

I find that I am suddenly hit by moments of intense grief, often unexpectedly or at the oddest moments. The other day it was while making the morning coffee, the cafetiere is built for two and the realisation that it will be too big for one was too much to bear. Watching TV and films naturally have me in tears when romance is on the cards, my lover died months ago and I grieve for that part of Mike every day. 

We have long talks about death, about whether the knowing and the preparation make it easier or whether a short, quick end is preferable as the pain of loss is concentrated on the moment. Neither is easy, at the moment it would be easier for me for it to be all over with, but at the same time I can appreciate the time we have had to say our goodbyes.

It is all so tiring.

February update week 4

As you will all have realised I didn't do a week three update. There was nothing new to say. There still isn't anything to say this week other than Mike says he is getting more and more tired as time goes by. 

All seems well each morning as he sits in bed drinking his coffee. All is well until he actually tries to get out of bed. The process of actually getting up and getting dressed takes about an hour, there is a lot of stopping and starting. 

The days are spent sitting. The walk to trip to the car wears him out. He can no longer leave the car to even put fuel in it, I have to do it for him. I do 99.9% of stuff now.

February week two update.

Mike is pretty much the same, but I went down with a bad cold on Wednesday, which doesn't help when you are trying to take care of someone else almost 24/7. I am feeling slightly better today, the nose is still bunged up and I have a cough, but my energy levels are improved. 

We saw Dr. B. for the last time on Thursday, (that in itself deserves a separate entry), the results of the bone marrow aspirate showed that the cells that produce the platelets are reduced and that there is some dysplasia resulting in reduced red cell production too. The good news was that there is no myeloma, so it is merely the side effects of treatment that are causing Mike's ill health. In my opinion it is still ultimately the myeloma that has lead us to the situation we now find ourselves in. Without the harsh chemo and gruelling  second SCT Mike would still have a relatively health heart and lungs that worked. There is nothing to be done and no point in being bitter. So we are continuing to try and make the most of the time we still have, that's when Mike can stay awake long enough. :)

February week one update.

I thought I would update the blog so everyone knows what's going on. Mike was only in hospital Monday night. They drained his chest on the Tuesday after which he decided he wanted to be at home. The doctors tried to argue with him, but the reality, whether we like it or not, is that the nursing staff just haven't the time or possibly inclination, to be constantly checking up on people. Mike doesn't like being left alone in a side room for eight hours at a time, unable to walk further than the bathroom and with nothing to occupy him other than four blank walls. No TV, no radio, a newspaper that he has finished reading. They couldn't say where the infection was, it wasn't his chest as that had been x-rayed, Mike reckons it was more to do with the eye infection he had been suffering from for a month. At home he is comfortable, gets fed when he asks, and has me running around after him. 

Amidst all the sadness however we do still have moments of laughter. On Friday Mike went to see a funeral director to get a quote and begin to sort out what he wants. While we were sitting there Mike said that the one thing he regretted was not being able to get to Australia. The lady said that it was possible, if I take his ashes to her and get them officially sealed, I will be given special paperwork which will allow them to be taken through customs. I can take him with me. So at some point we will be going to Australia, with Mike in my luggage, that's one way to save on airfares! Mike says I must take photos of him while I'm there. 

Tricky times

The last few days have been a bit tricky. Mike ended his birthday by calling an ambulance as he couldn't breathe. He had already discovered that his HB had been 8.5 (85) the day before and he reasoned that was the cause of his problems. As it was almost midnight, Mike went off to the hospital alone. It took him over seven hours to convince them he needed a transfusion, but they eventually gave in. After the transfusion he was discharged and safely back in his own bed by Saturday evening.

Today he was due into the day case for his immunoglobulins so we were up at 3 a.m. to set up the dialysis machine and get the process over before the appointed time. I duly delivered him to day case on time and made the 20 minute walk home. It was while I was walking Toni that I got a call to say they were admitting him, his breathlessness was a real concern and his infection markers were up. I rushed over with his night clothes etc. only to find him on oxygen, arguing that he didn't want to die in hospital. 

I won't bore with you with all the back and forth discussions, needless to say  Mike is now on ward, but only after he got his DNR, the last thing he wants is to find himself with an infection on ICU, unable to say no more please. To be honest, every time he goes into hospital he catches something, he even got Norovirus when he went in for his bone marrow biopsy. Tomorrow they will give him platelets, and drain his chest again. The hope is that Mike will gain enough time to sort out the loose ends that are bothering him. 

Happy birthday to you.....

Tomorrow is Mike's birthday. His health will stop him celebrating as he once would have, but I will definitely be celebrating the day that my gorgeous husband was born. I can have a drink for us both!

Happy birthday darling. xxx

Mike aged 11

Maudlin moments

I am having a bad day. Even before Mike starting discussing his funeral plans I was emotional and tearful. I have been spending too much time looking at old photographs of Mike, photos taken just after we met, photos of holidays together, photos of our wedding. Time takes its toll on us all, but the it isn't just time that has stolen away his youthful appearance. Mike is a shadow of himself both physically and mentally. He no longer laughs the way he once did, he doesn't laugh at all. He no longer says he loves me, he can barely look at me these days. I can read the anger and frustration in his face, he has every right to be cross with life, I just wish that anger didn't spill over onto me. 

A question to you all. Should I continue to write this blog detailing the last few months or should I leave it unfinished?

Every cloud.

Yesterday Mike went off to have a bone marrow aspirate, Dr B. wants to check what is going on with his bone marrow, whether Mike now has the added benefit of MDS / myelodysplasia / myelodysplastic syndrom and also do some genetic testing on the sample. Mike wasn't looking forward to it, he's only had two before and both were really painful. When I went back to the room to collect him (with wheelchair in tow) he was happy to report that it hadn't been anywhere near as bad, the reason being that he has lost 20 kg since the last one and it is much easier to do on an almost skeletal body (I don't recommend drastic weight loss as a cure for painful BMB!)

Nothing else has changed, the blood he was given made very little difference, his lungs just aren't oxygenating the blood sufficiently, something that is clear to see during dialysis as the blood in the lines has gone from red to a very dark almost black red. We don't have any idea how to improve things, and as yet, nor have the doctors.

What can you say?

We went to see Dr. B. yesterday afternoon. As you would imagine he was surprised to see Mike being wheeled in by me, he had hoped the chest drain just before Christmas would have made Mike feel better. Mike's platelets had dropped again along with his red blood cells, Mike expressed his feelings that his body is shutting down, Dr. B. said let's wait and see if the respiratory man can find something to help. There are currently no answers, not ones that anyone wants to say or hear at least.

Tomorrow Mike is booked in for red blood and platelets, the hope being that they will relieve some of his symptoms until he sees the respiratory consultant the third week of January closely followed by another appointment with Dr. B. 

Happy New Year, 2019 is here.

The weather here is what you would expect from winter in England. The sky is overcast and the sun low in the sky behind the thick cloud. Certainly not a good day for taking photographs (well not for someone with very limited ability.) So instead I will simply share a photo of the local robin.

HAPPY NEW YEAR!