Visit to St. Marks

The Monday after half term was the day from hell. I had run out of fluids and some medication so had to get on the phone to try and sort it out. At the moment phone calls are like my worst nightmare as they seem to take up so much of my energy and having to talk to people involves my brain trying to work at the speed of a normal person to keep up the conversation. The problem is I am in a permenant morphine fog that can send me into a trance or dream state and I can't always keep up with what's going on around me. But when you're talking to someone on the phone they don't know that and I just sound a bit special! That's why I tend to text or email people as it gives me time to think what I want to say and how to say it. 

Anyway I rang the company that supply my fluids to tell them I don't have any left at all after what happened in half term. (You can read about that in my 'Half term highs and lows' blog post) They told me that because my prescription has changed it would be against the law for them to send out any more fluids. WHAT! The doctors at Princess Alexandra increased the amount of fluids I'm now having but nobody informed the team at St. Marks and apparantly they are the only ones that can approve a change to my prescription. But because I have informed the healthcare company that the prescription has changed the old prescription is invalid now and so now I don't have a valid prescription. And to make matters even worse the chap that I normally deal with was off sick and he doesn't seem to have put any details of the communication he's had with St Marks to try and sort this out on my file so nobody at the healthcare company seems to know what's going on. 

I get on the phone to St. Marks and speak to one of the Nutition nurses there hoping that they will tell me that yes, they've been in touch with the healthcare company and it's all under control. But they don't. Instead they tell me that nobody from the healthcare company has spoken to them regarding a new prescription, they didn't know that I was now having fluids every day instead of every other and that they would try and sort this out for me. I explained that I had missed my last two appointments at St Marks because I had been so ill I couldn't get there and told her about my rice and custard diet. Ten minutes later I have Dr7's  secretary on the phone saying that Dr7 wants to see my in his clinic in three days time to get this all sorted out. But until I see him they will not be able to send me out any of my special bags of fluid, they will just send out some saline bags to last me for the rest of the week and they should come tomorrow. 

So it's good that I'm now going to be seeing Dr7 sooner than next February but I don't know what's going to happen to my fluids. Is Dr7 going to say that I have to stay on them every other day, even though I have felt a bit better having them everyday? Maybe. Sometimes the St Marks team get a bit precious about their patients and prescriptions and don't like anybody else messing with them so I don't know if they're going to be mad that the other hospital has faffed around with everything. Goodness knows they will say when they find out that they've changed the doses of some of my medication too!

And talking of medication I had to chase up my repeat prescription request that I made over 2 weeks ago. The whole system to order repeat prescriptions is a nightmare. You have to physically go into the surgery with a written request. I have explained to them time and time again that I am unable to do that because I am not well enough to get to the surgery but they refuse to take my request over the telephone. But, if I call the pharmacy next door to the GP surgery I can request my repeat prescription over the telephone and they sort it out with the surgery. Total madness. In theory it sounds relatively easy then to get the meds via the pharmacy apart from the fact that I ordered medication two weeks ago and they still don't have it ready. I had asked Lois to go into the pharmacy and collect it all for me but when she popped in on Monday morning she came round to mine with only 2 bottles of liquid painkiller. I was expecting carrier bags full not two bottles! 

So I rang them. First they told me that all the medication had already been collected. If was the case I told them, I would have the medication here at home, and I don't. Then they told me that because the GP surgery is going paperless (no more paper prescriptions, instead they will be getting emailed to the pharmacy of your choice) there have been lots of teething troubles with the new system and maybe my prescriptions had gotten lost in cyberspace. I needed some of the tablets desperately, which makes me sound like an addict which I guess I am to some extent, so the pharmacist told me that he would request them as urgent himself from the oncall GP. This was in the morning and he said he would call back and let me know when it was all sorted out. 

 

I waited all day to hear back from them and ended up calling them just before 6pm as I was worried they would be closing soon. The pharmacist told me that the oncall GP had refused to issue the prescriptions. Absolutely livid I then rang the GP surgery who told me that they had been issued and had been sent to the pharmacy. At this point I just broke down. I had just had enough. I wanted my medication, no, I needed it and it just seemed that it was just so bloody hard to get it. 

The receptionist took pity on me blubbering down the phone and said that she would speak to the pharmacist. Eventually after lots of tooing and froing  they sorted it out but the problem was that because they had told me it wasn't done hubby had now left to take Liddy back to the airport and I had nobody to collect the prescriptions. 

But the receptionist told me that my friend was in the pharmacy and she was bringing it round. "Which friend?" I asked. "I don't know. Didn't you send someone to pick it up?" She replied. By this stage I was so exhausted from it all that I just told her that I didn't know who was at the pharmacy, but if they were willing to bring my medication round to the house, then let them, because to be honest, I was past the point of giving a shit. 

So who was it at the pharmacy? It was only my bestie. She had decided she would just pop in on the off chance that it had all been sorted out and knew when she overheard the telephone conversation that they must have been on the phone to me. It's not the first time that's happened and it just shows what an amazing friend she is. She's always there taking care of me and I'm very lucky to have her on speed dial! 

I finally got my medication and once I was dosed up I went to sleep and didn't wake up until the morning. Trying to get all that stuff sorted just exhausted me. I sometimes sit and think that at work I would deal with complex HR cases, have emails and phone calls coming left, right and centre and juggle it all as well as looking after the kids and the house. Now there's no way I could do it- just a few phone calls puts me to bed for over 12 hours! 

Normally I would drive myself to St Marks. Once I had gotten over the fear of driving in London and had done the drive a couple of times I was fine and I now know the route off by heart. But because I have unexplained blackouts I'm not allowed to drive so getting to the hospital was proving tricky. The last time I had an appointment Kitty had driven me but I didn't want to have to keep asking her as it involved her coming to mine the night before because doing the return journey in one day was too much for her. After all she's still recovering from her pouch surgery and is not 100%. I thought about going by train but it would involve getting an overground and then the tube with 2 or 3 changes. I would then have a 10-15 minute walk from the tube station to the hospital and I knew that I wasn't up up that. My leg couldn't take that walk and I had visions of me collapsing on the tube and causing a big kerfuffle so that was out. I considered getting a cab but it would cost nearly a weeks benefit money and I just couldn't afford it. 

Then Hubby came to the rescue like my knight in shining armour. He had managed to get the time off work so he would take me and come to the appointment with me. Phew. I was so relieved. 

Thursday came and I felt dreadful that day but there was no way I was going to miss the appointment. No way. So I dosed myself up and we drove the 50 minute journey to the hospital. During the day the journey isn't too bad but if you try to do it in the evening during rush hour it's a complete nightmare. It's taken 2.5 hours once because the traffic was so bad. After negotiating the journey the next battle is to try and get a parking space. St marks has a small car park with about 20 spaces, 4 of them disabled. If you don't get there early there's no chance of getting any space so we drove round to the Northwick Park multi storey. There was a man standing in the entrance saying it was full. In a way it's good that they told you because I know my Dad has driven round the car park for over an hour before looking for a space. Because you have to pay on exit you have to keep driving round and round hoping that you eventually get a space otherwise you would end up paying over £5 just for the pleasure of driving round the bloody carpark. But then on the other hand we were faced with the problem of having nowhere to park. We drove back to the St Marks car park on the off chance there would be a space and as we drove in, somebody was driving out. I left Hubby sorting out the ticket as it was pay and display and he didn't have enough change. Luckily he was able to get some change from the shop they have at outpatients so eventually the ticket was sorted and we were able to get a seat in the waiting room. 

Hubby had never been to a clinic appointment with me before at St Marks and I think he expected it to be like other hospital clinics- you wait, often for a very long time, you get called in to see the dr or consultant, you have 5 minutes with them (if you're lucky) then you go home again. It's not like that at all. First you go and have your blood taken. There were a few people in front of me and I knew that it would be quite a while before they would get to me. You see St Marks patients are usually very ill, have spent lots of time in hospital and had numerous operations. We are the patients that no other hospital can cope with. That's why we're sent the St Marks. And as a result of our interesting medical history our veins are usually knackered and therefore impossible to get blood out of. 

I sent Hubby up to the Costa to get me a coffee and he went, came back and I drank the coffee before I was called in! Then it was my turn and of course they couldn't get any blood. Two different nurses tried in various places and while they did I stared at the Where's Wally poster that they have on the wall next to where you sit. I was very excited as they had put a new one up (I had already found Wally on my last visit) and so I sat looking at that, as determined to find him as the nurses were to get me blood. I won, finding Wally before they admitted defeat and said they couldn't get any, that my veins were the worst they had seen all day and that I would need to ask Dr7 what he wanted to do about getting blood. 

After that we were called to see Dr7 and we were met with handshakes for Hubby and a big bear hug for me. The relationships that patients develop with doctors and nurses at St Marks is very different from any other hospital I've ever been to. I'm on first name terms with the doctors and nurses and we talk about each other's family, kids and what we've been up to since we last saw each other. The appointments are not in and out jobies like I've experienced before and I'm sure you've experienced too. 

So we went in and I updated him on my recent weeklong stay at Princess Akexandra hospital, the changes they had made to my fluid regime and medications and the fact that I was sent home without having the synachten test done to see if I have Addison's Disease. 

I explained that I had gone to my GP who had requested an urgent test but that I had no idea when I would get it done and that the dizziness and the blackouts where affecting my everyday life. I told him that I was unable to drive and that because I can't walk far because of the cyst on my spinal cord I'm essentially a prisoner in my own home and that this combined with the extreme pain and fatigue means that I have no quality of life. We also talked about my diet and the fact that eating anything other than custard, cheese and rice leaves me doubled over in pain and that as a result of that I'm now eating very little and relying on Ensure milkshakes to keep my calorie and vitamin content up. 

As I talked he sat quietly, nodding, taking it all in. I didn't know whether this consultation would turn into another 'we don't know what's wrong with you so it must be in your head' kind if meeting. But thankfully it wasn't. He said that he would arrange for me to have the Synachten test at St Marks. Oh my goodness, I couldn't believe it! Not only that but because the test has to be done at 9am and he knew I wouldn't be able to drive myself down and we would have problems getting the kids to school if Hubby drove me that he would arrange it so that I would come in the day before and stay the night. I was so excited I thought I was going to burst. Finally I would be getting the test done and getting some answers. Suddenly I could see a light at the end of the tunnel. 

Then we talked about what to do with my diet. He wanted me to see the dietician after seeing him as his feeling was that it was going to be better to start feeding me instead of just having fluids. That would mean having nutrition being put into the fluid bags so I would be receiving calories aswell as essential vitamins and minerals. He asked me how I felt about that and the only concern that I did have was about putting on weight. I was maintaining my weight at the moment on the rice and custard and supplementing it with ensures drinks and I was concerned that adding calories to the bag would mean I would start piling weight on. So we decided that to start with I would get a 'diet' bag!

We spoke with the dietician and she agreed but said that it would take a week or so to get the prescription changed and get the new bags made up and sent out to me. I was going to stay on 2 litres everyday as that seemed to be keeping me well hydrated so in the meantime they would send me out some saline and fluid bags.  

Because the nurses had been unable to get any blood out of me Dr7 sent me up to the IFU ward so that one of the nurses up there could get some blood out of my Hickman line. Because this has to be done by specially trained nurses and carried out in a sterile manner it couldn't be done in the clinic. By the time this had been done we had been at the hospital for the best part of 4 hours. I was completely exhausted and slept in the car on the way home. But I felt that at last I was getting somewhere and that maybe sometime soon I would have some answers as to why I'm feeling so crappy all the time. I was pleased that Hubby had been with me to ask questions and take in the information we were given as the morphine fog affects my memory and I do get myself all confused. That night I slept better than I had for weeks. 

NB x