Sunday, 3 March 2013

I'm back!

Hello everyone!
I can't believe that it's nearly a year since I wrote my last post.....where has the time gone?
Well I can tell you that we've had a nightmare 12 months but hopefully we are out the other side now.

So where do I start??


The last time I wrote on here I was going into hospital to come off the opiates that I was on. 
I ended up being in hospital for three and a half weeks and it was one of the hardest things I have ever had to do. But I have to say that the Sisters, nurses and HCA's at the hospital were all amazing. I'm fairly sure that if it hadn't been for their patience and encouragement I would have given in very quickly! 
I didn't give in though and I came off all the opiates that I'd been prescribed. 
The trouble was that it didn't work, I was still in huge amounts of pain, if anything more so, which was really disappointing. 
But it answered the question that we wanted the answer to.........the opiates weren't causing my pain. 
And by coming off them, even though I was going to go back on to something, it meant I could go on at a lower dose and we could effectively start again. 
My pain consultant suggested that I try something different this time, so I went onto phentynol patches. I didn't really get on with these though. I didn't feel any real pain relief and the patches didn't really agree with my skin either!
I was slightly concerned that I was running out of options but my consultant told me about a new drug that hadn't been about long but the few patients that he'd put on it had really benefited from it and he felt it was worth a try for me.
It's called Tapentadol. It's another opiate, but I am on a significantly lower dose than I was on with the oxycontin etc. 
I have been on it now for around nine months and I am fairly happy with it! I'm not pain free and I do still have some horrible sensations that I've no idea the trigger for, but if I was asked to choose between this and Oxycontin then I would choose Tapentadol! 


So I came out of hospital mid April which gave me just under a month before we were going away with my dad for six weeks around the UK as a kind of joint 40th birthday present from my dad...........Our big holiday! 
The trouble was that I'd been so inactive in hospital that my legs had really seized up. I had to have intensive physio for a few weeks and I was told to take it really easy and give myself time to recover. 
There was a problem with that though.
Martin was not feeling well himself. He wasn't eating well, he was incredibly pale, very lethargic and fatigued. 
So I found myself trying to look after both of us........not ideal!! 
Before we knew it we were celebrating (and I use that term very loosely) Martin's 40th birthday (a Christmas party in May.........genius!) and then we were off on our six week trip around the UK - I'll be doing a separate post about that later! ;-)
Unfortunately Martin was really struggling. He was getting less and less of an appetite, he was so fatigued and to be honest it was incredibly worrying.
We got to the Lake District on a Saturday and by the Tuesday, we returned home, two weeks earlier than planned :-(

It's quite a complicated story but basically we were told that the doctors were going down the Lymphoma route. He'd had a CT scan, various blood tests - he'd had to have at least two blood transfusion sessions because his blood count was worryingly low. They then did a bone marrow aspiration, which didn't give them any results so they decided then to do a biopsy of the lymph nodes in his abdomen. 

This was all done over the course of about 4 weeks but all the time Martin was getting weaker.
He had the biopsies done as keyhole surgery and it was from those biopsies that they eventually got a positive diagnosis. 
He was diagnosed with a malabsorbtion infection called Whipples disease. It is incredibly rare and the biopsies were sent up to the research department of Great Ormond Street so that they could confirm it. They said that his was only the 10th case they'd seen in 10 years!! 

Trust Martin eh?! 

Fortunately there was treatment for it. He was admitted to hospital for two and a half weeks where he was fed by tube and given IV antibiotics, as well as all sorts of vitamins and minerals. And when he was discharged he was put onto oral antibiotics for at least the following 12 months.

I'm pleased to say that he is doing brilliantly now. He's put on over four and a half stone and is looking amazingly healthy. He still has his off days but to see him eating so well and having enthusiasm for life is fantastic!

When I think back to this time last year........well I really don't want to! ;-)


One thing I just want to say about our experience of Martin's poor health throughout 2012 was the amazing support we had from our family and friends. It's at times like that you really find out who your true friends are and whether it was driving me to the hospital or visiting Martin when I couldn't go or driving me to Plymouth so that I could have my treatment and many more gestures such as these, it all made the difference to us both and for that we will forever be incredibly thankful.


Of course this was such a stressful time and I wasn't looking after myself particularly well. I have to say that our GP was fantastic. She was fighting Martin's corner with everything she had but she was also concerned about the affect it was all having on me.
Against my better judgment, I had to agree to getting outside carers set up to come in and help me. 
I was SO frustrated.
I felt as though I could manage everything but it wasn't until they were coming in and helping me that I realised just how much of a struggle it had all been and how much I wasn't looking after myself properly at all, Martin was my priority!

It has been such a difficult thing to get my head around. In my head I should be able to do everything and asking other people to do things for me has been such a challenge for me.

Luckily the company that I've got coming in has been great, I've got a lovely group of carers who come in and I see them now as friends really! 
I still find it impossibly difficult asking them to do things for me but most of them know what help I need now and they just get on with it!! ;-) 

So to be honest we were quite glad to see the back of 2012! 

It was supposed to have been a great year for us and yes we did have some definite going to the Olympics! But they were few and far between around the low lights! far so good!

Martin is well on the road to recovery and dipping his toe into a theatre project again, I've got my teeth into swimming (something else I'll write about in a separate post!) and we have booked a holiday in complete what we didn't do last year and with a canal boat trip thrown in for good measure!

I hope everyone is keeping well.....or as well as they can! I look forward to adding more posts over the coming feels good to be back!! ;-)

Much love :-D


No comments:

Post a Comment