Progress & Recognition

We left the house at 11am in an ambulance with our just in case paramedic on board. Hubby laid on his back positioned on a piece Roho cushioning to try and save his pressure sore from getting even worse. There he laid for the 1 1/2 journey feeling the pain cursing through his body with every bump and lump in the roads. His swollen feet on fire with the neuropathic pain.

We phoned the Outpatient Assessment Centre Bolsover Street, Central London, when we were about 15 minutes away and to their credit, porters were waiting for us to take us up to the first floor appointment. No sooner had we arrived and they decided to send Hubby for some more x-rays, which we found rather odd since in the preceding weeks, both MRI / CT scans had already been taken. Oh, a different angle is required with Hubby sitting up to show how his spine looks under the pressure of gravity. Okay we said, not sure how we will accomplish that for you as Hubby can not sit up unaided. Anyway we managed it, sort of, with me and the radiology nurse helping to prop him up. I love how these consultants order these tests and do not have a clue how difficult it is for the patient to actually do it.

We eventually got to see the consultant after a further wait. By this time the wound blood was starting to seep through the dressing, so I guess he got to see it at its worse. He did not seem to deliberate for long before announcing to his colleagues, that a bed needs to be found urgently for his patient. They will try and get him in early next week, or as soon as a bed becomes available. He told Hubby that he hoped he realised that it will be a prolonged hospital stay, we said what about a month , he said no maybe longer. He mentioned something about Hubby's Baclofen pump being a possible extra source of infection, that was something new to us which we will have to research what he meant.

We thought we were finished so asked the ambulance crew up, but no apparently they wanted to do  pre-admission procedures to apparently save time next week during his admission. Hubby by this time is getting very grumpy, having not being able eat, being in pain etc etc. The poor Doctor taking the bloods & details got the brunt of Hubby's displeasure, which I hope he does not take personally.

We eventually set off for home at about  5.30pm. On the way back the driver got a bit lost and we ended up on the M1 rather than A1 so Hubby had to endure an even more bumpy cross country trip. At one point I thought we were in medical trouble with Hubby as he went as pale as a white sheet, his face contorted in pain. How he managed to keep it together I do not know, as even myself able bodied as I am was in pain, feeling sick etc. We arrived back home just after 7. 8 hours since leaving home in the morning.

Can someone tell me how this is conducive to good patient care, well being. It is about time specialist units like this made use of information technology , doing consultations in conjunction with local doctors via video phones.

So now we wait for the available bed at RNOH Stanmore and another torturous journey to hospital. At least we have a few days to get everything ready.

Overall a successful but painful visit .....

May be some light at end of very dark tunnel

Well what a week, last week was.

We got an interesting phone call from the city housing people to say there may be a fully accessible bungalow available soon in one of the prettiest villages near here. It has not been fully finished off yet so if we are successful, there will be many cat1 waiting list clients who will want, we may get the chance to have a say on what accessibility things we need to make it work for us.

Then on Saturday we received a letter to book an admission for the vital operation that hubby needs to get our lives back on track. I rang first thing on Monday and was somewhat disappointed as the earliest they could offer was 21st September, not long you say. Well it is when you are existing in a living hell, full of pain, no sleep, cant eat properly and feel like your own muscles are crushing your insides.

Then on top of that he has a urine infection that they will not aggressively treat until he is  in hospital prior to his operation. This makes him even stiffer and his spasms even more severe. It also means that 3am in the morning I am often found giving him another urine catheter.

Grit our teeth and get on with it as usual as no one in the medical profession, listens or hears our cries for help, no one gives a shit, and don't we know it.

Ground Hog Day...

You could re read my previous blog over and over again as that is life here in our household. Relentless same thing 7 days a week , no rest days for either hubby or me. Particularly bad day today, feel like walking on egg shells trying not to set off one of his outbursts born of pain and frustration. He is having one of those particularly bad days, "if they (medical profession) don't do something soon I wont be here for them to do anything" intimations of suicide, I listen to his angry words and wonder yet again if I could do more, feel like it is my fault, that we cant make anyone listen and most importantly act.

It was back in March over 4 months ago that he made the brave decision to let the medical profession operate on him again, to insert a Baclofen Pump. He has lost all faith that anyone can help him live again. His is not a life worth living at the moment, every breath = pain, every movement = pain. So here he sits in our living room watching TV (well looking through it lost in his own thoughts) sitting as still as humanly possible, waiting for the next painful spasm to nearly throw him from his chair. While I talk to my only companion this computer, trying to find answers to the unanswerable.

Why are people like Hubby left in the community in such pain when there are medical interventions that can and morally should be done urgently to stop them from going out of their minds.    

5 days on quite obvious no one gives a shit

The real story of caring today and the real pain of being on a NHS waiting list.

It's Saturday, spent all week waiting for the calls from the medical people who have the power to change our situation. But no we are still here in the same bad position.

I have spent most of the day after getting hubby up at 8am this morning trying to rearrange his feet, trying to make him a little more comfortable. Sitting watching him, as his left hip spasms so bad that he hangs onto his wheelchair with his right arm as if riding a bucking bronco ride, trying to hang on until it subsides or I lift him again to try and make him comfortable. But still no one is listening I watch his face the pain etched across it, and jump out of my skin as he shouts in pain and his startle at the sudden start of the spasms again.

I dare not complain of my many aches and pains, as his are 100 fold mine. Just praying my body holds out long enough to see him through this. This week I had to give up another chance of getting back to work because we have no carers.

Monday I will try and get him to the local hospital for an ultrasound scan of his bladder, maybe that might kick start some much needed help. I hear him shouting in pain again got to go and help him. See you all laters ....