Monday, 20 November 2017

Bottom of the well.

Many people talk about their depression as a black dog. Mine doesn't feel like that. I feel like I'm at the bottom of a deep well, I can see the light, but every time I am about to climb out, I lose my hold and fall back. Sometimes I only fall a short way and sometimes I fall back to the bottom and lie there dazed for days, weeks or even months. I have been out of the well. I know it is possible. I just have to remember how I did it.

Thursday, 16 November 2017

The cheek of it!

Prepare yourselves for the biggest moan EVER! 

Mike is off at the hospital for his immunoglobulin infusion. He called me just as they were starting it off (after various tests and pre-meds that took 90 minutes!) to say they had started. He cheerily said they had given him a booklet that he would bring home, and that it is a real human blood product, not a synthetic one (er... I said that several weeks ago when I pointed out the reason there might be a reaction.). Does he ever listen to a thing I say? Obviously only when it suits, as you will soon see.

I commented this morning before he left that I would like to achieve something useful while he's gone. He heard that alright as the second conversation went thus:

Mike: "Why don't you clear some space so you can do some exercise?"
Lorna: "I'm not in the right frame of mind to exercise." (I would simply berate myself for not being able to do long enough / heavy enough / gone backwards, why didn't I keep it up......)
Mike: "You would be if you started again."
Lorna: "I've got a lot of other stuff on my mind right now"
Mike: "Why don't you talk to me about it?"
Lorna: "I did try, but you simply replied 'well I might as well just give up and die if that's how you feel' so I don't bother mentioning my problems."
Mike: "Well now isn't the time to talk about it, I'm on a ward with 6 people."

Does anyone else ever feel like screaming at their partner?

No I haven't exercised either and so far I've achieved nothing. :(

Tuesday, 14 November 2017

Not much change.

I seem to have depressed everyone with my last two posts. It wasn't my intention, but not glossing over stuff has that effect. Mike is pretty much the same. The hospital have given us (him) a different antibiotic to try as the sputum sample he gave then last week might possibly have had a bug resistant to the usual stuff, and as nothing else seems to be helping him, and he's negative for every other bacteria and virus they checked for ........ Fingers crossed it improves things. 

The renal team meanwhile have stepped in to check whether Mike has enough underlying iron to even be able to produce red blood cells, again fingers crossed they find out he hasn't and an infusion does the trick. 

After threatening to start Christmas I am happy to report that although the lights remain in the attic, I have bought Christmas presents for six! Only five to go..... make that six, I had better buy Mike something......

I will probably start on the cards Thursday while Mike gets his immunoglobulins. 

A photo of Toni, just because I can!

Friday, 3 November 2017

Oh my goodness.

So yesterday we saw the "big" man himself (he isn't actually big, in fact he might be better described as petite!) We hadn't seen him since before our holiday, back in August, Mike's appointments in the meantime had been with the CNS team or on one occasion with one of the juniors doctors. I think his reaction when he saw Mike had him wondering how come he hadn't seen him for over two months, the fault of course lies not with him but with a NHS which is stretched so thin you can see the cracks under the papering over.

Mike is still neutopenic, his platelets have dropped to 19 and his immunity is so low that Dr S.B. has decided Mike needs immunoglobulin therapy. He is booked in for his first session in two weeks time (as with all things haematology, there is no earlier appointment available, useless system!) He has also been prescribed GCSF injections to try and get his neutrophils up. 

Mike continues to feel awful physically, and I think after yesterday's appointment he is feeling a tad down as the lack of progress inevitably leads to dark thoughts.  I know everyone says it, but I just wish life would treat us a little more kindly. If we've got to cope with health worries let us win £1,000,000 (or more!) If we've got to cope living on a budget, fix Mike so he can at least earn enough to live! 

Still we've got Christmas to look forward to. Maybe I should start immersing myself in that, be the crazy lady who has the decorations up the second week in November. 😆

Wednesday, 1 November 2017

Apologies. x

Good morning world! I bet you all thought that I was gone for good, leaving you all on the edge of your seats about Mike. I've been to the blog several times, meaning to update you all, but I didn't seem to be able to find the words and then as time passed I felt guilty and that only made it harder.  

I'm here now though, so here we go. I won't bore you all with the details of events from where I left off, I'll quickly give you the bare bones.

When I left you all Mike was bed bound and awaiting physiotherapy. What a waste of time that was. The physiotherapists would do their rounds once a day, usually when Mike was down on dialysis, and as he wasn't in his room they wouldn't return until the following day. If he was in his room having come back from dialysis they would refuse to do physio as he had been on dialysis. Oh and to add insult to injury, they didn't come weekends. To to sum up, Mike did Monday, Wednesday and Friday dialysis, leaving Tuesday and Thursday for physio, if he was feeling up to it, which he didn't. 

Eventually on 19th June Mike decided to simply discharge himself into my care. The hospital didn't want him to leave, he couldn't stand never mind climb the stairs or even get to the toilet. But Mike was determined and so somehow me and our friend Mike C. managed to get him home, lift him up the stairs and get him into bed. For two weeks I struggled lifting him out of bed, onto the toilet, off the toilet, in and out of his dialysis chair...... it took a month for him to have enough strength to use a frame to get himself up and down out of a chair. Hospital visits relied on a wheelchair. 

Slowly Mike has regained enough muscle to be able to walk short distances. His blood figures are still not brilliant and half the time he is neutropenic, his platelets are still around 30 and he picks up infection after infection from the inevitable waiting at hospital appointments. Nearly six months on and he is really only as well as he was a month after the first stem cell. The "experts" keep saying "give it time", I swear the next time they say it I might just start screaming and not be able to stop! 😄

We have both been struggling with the relentless treatment regime, there is no escaping the dialysis and the last couple of months only heightened how life limiting it all is as we tried enjoying our holiday and then had our wonderful friends over from Australia for a month. 🙋(Quick wave to L & D!)

I have come to realise that I need the blog as an outlet for my frustration at / with my life, I know that I am currently suffering once more from a form of grief, the fact is I had assumed Mike would recover in the same way that he did after the last stem cell, that our life by now would be the same as it was two years ago, we'd have to do dialysis but there would still be days off and life would be sweet. Poor Mike just isn't able to get his body to recover, I don't know how to help and no matter how much he hates me for it, I just can't stop myself from being "negative" unable to see or imagine that life will be better in six, twelve or eighteen months time.  As I told a friend recently who is struggling, grieving for a life we had expected but lost is similar to grieving for a loved one. The Mike I met and fell in love with has all but gone, and even though I still love the Mike I have now, I mourn the loss of the Mike who has gone.

Apologies to anyone I might offend in my attempt to express my feelings. 

Monday, 5 June 2017

Is there no end? Day 20

I had a call from Mike yesterday. His mouth is still so sore that eating anything solid is still impossible. They are still feeding him through the tube and he is still having those lovely milkshakes. So far so good.

Mike also told me that they have moved him out of intensive care back to the ward where he has his own room and his own bathroom. This would be good, except he realised that he can't actually get out of bed, his leg muscles have wasted so badly that they will no longer take his weight. He can't walk or stand and needs physiotherapy. Yet another hurdle, something else to stop us ever getting back to some sort of normality. 

Please don't tell me it will all get better unless you can guarantee that he will be normal again by September. I'm so angry with the whole world right now. 😭😡

Saturday, 3 June 2017

The verge of adulthood day 18

It's nearly a week since I posted. I should have posted progress before but I couldn't find the time or brain space. For those who don't FB I will recap.

Sunday +12: Mike went backwards. 

Monday +13 Mike stuck backwards. Very frustrated wife questioning why, nurse (they rotate constantly) says he doesn't seem any different from when my colleague handed over. Luckily a few hours later a different colleague who had seen him Friday happened to pop in and couldn't believe how much worse he was. (Thank you. See I'm not crazy.)

Tuesday +14 Mike still in rut. One of the drugs they are giving him makes him hallucinate. Conversation has been impossible since he was taken to Intensive care. The only words out of his mouth have been random rubbish unconnected to what I have been saying, The icing on the cake is a call at midnight (so this is partly for Wednesday). Mike tells me to call the police and tell them the nurses are trying to murder him. 

Wednesday +15 Mike finally agrees to having a nasogastric tube. He hasn't kept anything down for fifteen days. I have a meltdown as I can't understand why Mike isn't improving, not even a tiny bit. 

Thursday +16 I manage to do something never before seen by the paramedics. Whilst simply walking along I manage to get a screw embedded in my foot. I did try to pull it out, no luck. The ambulance was called out by a passing stranger, much to my embarrassment. A trip to A&E was made and two hours later I was out and on my way, the super fast service due to the fact I told them I was actually on my way to Heartlands to see my hubby in Intensive Care. They couldn't have been more helpful and I very grateful. Now you would have thought I would have gone home (I only had one shoe by now) but no, I dutifully went off to see Mike. Cue another meltdown and a good telling off for Mike. I told him enough was enough and that if all I was going to visit was a sleepy, delusional  husband then I wasn't going to keep spending four hours a day travelling. 

Recreated accident

My poor foot!

Friday +17 Another delusional phone call first thing, Mike is convinced we have won some big court battle and can now afford to pay for private care. He has been trying to pull out his lines and feeding tube. I suggest he asks them to review his drugs as obviously something is sending him loopy. I don't visit, but in the afternoon Mike is taken down for dialysis on the proper machines. At 18:00 Mike calls to tell me he has managed to drink and keep down the special fortified milkshake they gave him. Finally a bit of progress.

So today is day 18+ the first day of adulthood. He was out of hospital last time round. Still at least we finally have signs that he is going to recover, cross your fingers he doesn't go backwards again.