My Primary Myelofibrosis is only half the story. I also have Dilated Cardiomyopathy, and I was told that I need open heart surgery to replace my Mitral Valve with either a mechanical valve or a Bioprosthetic Valve (made from animal tissue). I`ve had this heart problem for several years and used to go regularly to Stepping Hill hospital in Stockport for check-ups.

Then something changed when Christie Hospital informed the cardiac consultant at Stepping Hill that open heart surgery, and the fact that I would have to be put on a Heart-Lung Bypass Machine, would be too dangerous for me because of my Myelofibrosis. Then, around the end of 2015, my care was transferred to Manchester Royal Infirmary. I went for two appointments there, in January 2016 and February 2016 (when I had an MRI scan.)

Since then, nothing. The cardiac team at MRI seemed to have lost interest in me, I suppose because they could not operate on me.

Eventually, at the beginning of June this year the Christie consultant contacted the MRI cardiac team and persuaded them to send me an appointment. I was sent an appointment for 24th July, 16 months after my MRI scan. This appointment was cancelled a few days later and another one made for yesterday.

So I went yesterday, sat in the waiting room for an hour and a half, then a nurse came out and said that the cardiac consultant was not in today, and there were long delays to see another doctor. (I overheard a nurse saying to a colleague " why does his secretary make appointments when she knew the consultant would not be there?)

So, I and several others waiting to see him, walked out after being told new appointments would be sent.

So, basically, I seem to be stuffed. No operation can be done so I suppose I can`t blame the cardiac team for not sending for me. Although the Christie chap pointed out that at least they could review my medications, if nothing else.

Despite all this I feel well, I try to avoid walking up steep hills,or series of steps. Such as the 108 steps in Macclesfield, or the 500 odd steps up to Whitby Abbey. They are definately a no-no as anything like that makes me breathless.

So, while I am getting first class care at the Christie, it doesn`t seem possible to do anything about my heart.

Eric, thanks for opening up about your own particular set of circumstances. I suspect you thought about it long and hard before putting finger to keyboard, it's not always easy, but once started, it does tend to get easier.

There is not a lot I can offer in the way of support, as I know very little about your particular illness, except to say, isn't it an awful feeling to go with the thought that you have be hung out to dry.The attitude of the secretary just making bookings willy nilly, probably trying to keep her job, whilst offering false hope to all patients booked into the system, is very shoddy, to say the least. Sometimes the NHS is guilty of gross complacency, and I have heard of others suffering a similar fate.

I would have thought that in the two years or so since your MRI, that advancement in medicines during that time would have done something to help you, but perhaps not, it depends how much money is thrown into the research. However, it's good to hear that you seem able to handle your situation to one degree or another, by adapting your lifestyle, long may it continue. Quality of life is very important, and if you feel you have that, then all power to you.

 Feel free to add to your story as and  when, as I have said many times, this thread is not specifically about me, and I would hope that others will soon join us to relate their stories.

As an aside, I would think that the 500 odd steps at Whitby Abbey would be enough to scuttle most folk. I have the feeling that I may have done the climb when I was about 6, and living just along the coast from there, as a youngster. We had a holiday at Whitby.

Still thinking about you Dougie but haven't had time to post, although I do pop on to see if you've posted.  

I can't really say I've quite settled back into work yet but it's getting easier.  Also this evening I had to go and swear the oath for probate as I'm mum's executor,  then to take paperwork to the estate agent who's selling mum's house, so it's been a full but fruitful day.

It's good that you're staying positive and that your medical team are looking at alternatives.  It can be frustrating having to wait for results and then to see action but I'm sure you'll get there.  

It's good to see you posting on here too Eric!  I'm familiar with your situation as per your posts on the daily thread and I'm sorry to hear about your latest let down.  There certainly are a lot of improvements to be made in the NHS. We have amazingy medical and nursing staff but they, and we, are let down by admin and management.

Keep smiling and reading Saint's posts Dougie! 

Thanks for your posts Dougie and Caz. I`ll keep you informed of any developments, and you keep doing the same Dougie.

Whilst we are in the mood for knocking the NHS, I have this to say. Two things should have happend today, but did not. I was promised a visit from the District Nurse - fail, I was also promised that the Nursing supervisor from Guy's that I deal with, would organise the removal of the catheter - fail.

The catheter bag is supposed to be replaced every 2 days, to avoid infection. It's the bottom section that stores the urine, and has a tap to drain off when it becomes full. As the bag is the original one fitted on Saturday, and I was told I had spares in a sealed bag, I set to, to replace it. Well surprise, surprise, the spare bags were for overnight use only, and are not suitable for normal ware. There was however a bag of similar design to the original, but fell short on the length of the feed pipe to the bag, meaning that the drain off tap would have been situated at knee level, not ankle level as it should be. To be honest, no amount of exercising my equipment, or trying to describe 6" as ten, or 4 as 6, as boys tend to do, would have made this work correctly. For it to do the job it's intended for, I would have had to put King Dong to shame, and by a long way.

So, tomorrow I will make my way to A&E at Farnborough to have the catheter removed, without further reference to anyone, or if that is not advisable, at least get a supply of correct bags to do the job.

The new anti sickness pill is to some extent having an effect, although it only gives relief for around 12 hours, so maybe a step in the right direction. I have been sick a couple of times today, but I have also managed to eat some food as well. I had a small portion of mash, scrambled egg, and beans for dinner at the cafe. So far it has stayed down, but I am not too confidant as to success. 

So, baby steps forward, but at least for today, they have been forward, if you forget the NHS cock ups. Tomorrow is another day.

Caz, hopefully by the end of this week, being back at work will seem common place, but it does take a while, does it not. You appear to have a busy life, which is far more important then answering posts in this thread, so don't worry if you don't make it for a few days.

 You mentioned in a post a while ago, that you and hubby were intending to come to Kent next year. I forgot to get back to you on that, but I would be only too pleased to share a table outside of my local cafe, provided of course I am still able. They do all sorts of specialist coffee's at a fraction of the price the major chain coffee shops charge, with or without sugar., and the food is pretty good as well, from burgers to roast dinners. It's something, at least for me, to look forward to, and a goal to aim for. 

 Catch you later today, perhaps.

Morning Dougie.  It's good to hear you're taking baby steps forward but not good that you're being let down by the very services there to help you.  I think your NHS experiences are quite common place sadly.  It's the small but important details that let the system down.  The last thing you need when you're ill is to be chasing round putting things right and it doesn't give confidence that things are seemingly cobbled together willy nilly - pun intended in your case.  Sorry! 

Yes I do have a busy life and that's the way I like it.  Boredom is my worst enemy.  I took early retirement about 5 years ago but it didn't suit me, so I took this little job to keep me out of mischief.  I can come and go as I please, I have no contractual commitments but on a personal level being committed when the company is busy makes me feel more useful.  

The coffe sounds good.  I'm a bit of a perfectionist with my coffee.  I like it freshly ground, strong and enjoyed in good company.  Your cafe sounds perfect!  

Right I'd best get off to work.  Be good!  X

Hope you're ok Dougie.  Did the catheter go, or are you still plumbed in?   X

Nope, still plumbed in I am afraid, and still the original lower bag. I had a phone call from the head nurse, saying she was arranging for it to be removed at Princess Royal University Hospital (found out the new name now) and that she would get back to me. Did she xxxx. Unable to get a new bag from the chemist, so not happy.

Not had a particularly good day, lots of nausea, but able to keep down the little bit of food I tried to eat, so I suppose that's something. I have felt very cold all day as well, and very, very sleepy.

That's it for today.

Sorry to read that your day hasn't gone to plan.  I imagine the little things become big ones when you're in a long battle and it's wearing you down.

At least the new medication for the sickness seems to be helping.

I know that I tend to feel sleepy and cold when I'm under the weather so I'm sure it's worse for you.  Hopefully some warmer weather and sunshine will lift your spirits.

Thanks Gandalf.

Yes, the new anti sickness has gone at least part way towards a solution, although the continuation of the nausea is giving me concern as to its long term effectiveness.

You are right of course about the cold and tiredness, but up until today it has not been a problem. I am always wary when something new occurs.

I have been taking high concentrate supplement drinks, Fortisip, and Calogen for a while now, neither of which are particularly pleasant to drink, but today I received a package from the dietician of another,(Foodlink Complete, by Nualtra) which you mix with milk, and are very, very pleasant indeed, it's just like drinking a hot chocolate. More of these please Miss dietician, I think they are the answer. If I can't eat, these drinks become very important.

Fcuk .
Sending some energy your way Dougie,Like the rest of us.

Thanks Tony.

I echo Tony's sentiments.  Fcuk!  I'm swearing a lot on this thread!  

The nutri shakes are great for getting those vital nutrients and it's good that you've found some that are palatable.  Sleep won't hurt but make sure you wrap up well. You don't want to be using calories to keep warm. 

It's so frustrating that our health service has shoddy spots that let us down.  It almost makes you feel they've given up on you and that's when it's time to dig your heels in to ensure you get what's needed.  Dougie, forget about not making a fuss!  This is your life and your wellbeing.l that's at stake.  Make demands! 

When my mum was in hospital, I got a call to say she was being discharged and I could go and collect her.  I refused to until they'd got a care package in place because I knew she wasn't well enough to be at home on her own. They agreed with me and she stayed in a further five days, during which time adequate arrangements were made.  

Within an hour of getting home, we had a visit from a district nurse and not one, but two care teams.  They didn't quite get that right but better than none at all.  I'm not ashamed to say I questioned everything, made demands and perhaps pushed boundaries but I can honestly say we had the best care and support possible. 

Dig your heels in Dougie.  Let them know you're fighting!  Speak to your palliative care team.  I found our McMillan team to be the most effective at getting things moving.

I do hope you have a better day.  X

Caz thanks.

I am sorry that you have had to resort to swearing, and also for taking up too much of your valuable time in the early mornings. We all need a kick up the backside at times, and I think the above post is as good a kick as I have received so far.

I am not one for making a fuss, but when I do break, I break, and today, thanks to you, is going to be the day a few folk are going to see a new side of me that perhaps they were not expecting. The head nurse in charge of my case, her name is Alex, will be the first. So much of what happens, outside of the consultation team, goes through her, and for whatever reason, perhaps too much work load, whatever, is not my problem. This is now four days since I was told that the catheter had to be removed, still not done. She has informed me that I would be referred to the palliative care team, not heard a word from them, and McMillans have never even been mentioned, although I am aware of the work they do. McMillan has been mentioned before in this thread, not least of all by yourself, Jake, and a few others over the last few weeks. I always used to think that the time to speak to these folk would come later, when things were a bit more desperate in the long term, but you are right, there is no time like the present, so I will get on to that.

I do need the support which perhaps only they can provide, and whilst this thread has been a godsend in terms of moral support, I do need professional involvement, not so much as a guide, or counselling, as I don't feel I need that yet, but more in way of showing me the way forward, and how best to deal with this situation, which as you know, I have been alone in dealing with.

My thanks go to everyone in this thread who have offered advice and support, it's been invaluable, and please keep it coming, but from today, it's time to get the professionals involved, and to see what can be achieved by them.

If you use Facebook Dougie you could post about your standard of treatment. They may respond better then .. Put it to the local paper also. Hope you  get  it sorted soon .Don't want any infections occurring. 

Good luck in getting some action going Dougie! 

Thanks Art.

The incidence of infections is quite high from catheter use, particularly from the bag which can drain back to a certain extent. As mentioned before, the collection bag I am still using is the original one from Saturday, and should be replaced every two days.

As I thought, Nurse Alex was unavailable this morning, so I am waiting for a call back, nobody else was able to help, so of right now, I am no further forward. The next problem comes tomorrow, when I am tied up with other departments at Guy's for the best part of the day, and then of course it's the weekend, where nothing much gets done. I am starting to get very angry now, so something MUST happen today.

I have never made mention on Facebook of my situation, so non of the friends there know I am fighting Cancer, and I don't feel like telling them now. Worth a though though, so maybe one for the future.

Thanks again.

Thanks Gavin, I am trying, so keeping my fingers crossed for later.

You know what they say, no bad publicity is publicity for good publici . . . er . . Oh you know what I mean.

I don't blame you for feeling angry and frustrated when things aren't going according to plan. Ideally you should be conserving your strength in getting better, not chasing around trying to get things sorted out and settled down. Hope you are able to keep on top of it all anyway.

Thanks Ian, still waiting for the phone call, but all cleaned up, and hoping for a result very soon. This Alex I have had dealings with in the past, and I was not impressed then. If she does not get back to me today, I will search her out tomorrow when I am at Guy's, and tell her a few home truths.

Just got back from holiday Dougie to find you're still really positive, despite the setbacks from health workers not making good their promises; sorry that's happening. I'm not surprised you're feeling cold and sleepy- after all, you're just about managing to keep what you eat and your energy levels no doubt rise and fall a lot. That said, and I think you & Caz have discussed this already, the sleep is an important part of repair-and-fight. Shame you have to be concerned about the care that's due to you as well. 

Glad to see you've been fronting the current conditions again too. Prompts me to post, that's for sure.

Also good to see you & Bradders having lengthy chats. I was a bit worried about you Eric when you slipped under the radar for a while on the Daily- now reading your posts it's like two blokes in a pub having a good old put-the-world-right.

Keep your chins up both. x

Thanks Bertie, I hope you had a great holiday, boy, what I'd give to go on a quality holiday right now.

I was pleased to see Eric felt able to open up in this thread, and hopefully it might encourage others to do the same.

Still waiting for phone call, my bet is it's not going to happen., this despite a reminder to her work station around 14.30.