Frustrating Times

I’ve had two very contrasting appointments at the hospital this week. The first was in rheumatology. When I arrived the receptionist told me my appointment had been changed and was now on 27th. I said no one had told me and if they had I would have said that’s no good because I’m in Germany that week. It is very irritating when these things happen. The receptionist could not give me another appointment till after March. He was very apologetic and gave me the secretary’s number to get an earlier appointment. He couldn’t tell me why it was that I hadn’t been informed.

I rang the secretary later. She couldn’t tell me why I hadn’t been informed of any change. I said it had happened a few times before. She did not answer this nor did she offer any apology. I explained I was away on 27th. She then offered 29th. I apologised and said I had a funeral that day. She said it would be a while then. She offered one more date and when I couldn’t do that because I already had a hospital appointment, she gave up. She said I had to ring one of the nurses on the helpline to see when they wanted to see me. I explained I had a transplant and haematology wanted an opinion from rheumatology. She said the nurses would have to sort it out.

I rang the nurses next and after a brief conversation to explain was given an appointment for mid December.

If you look at this objectively then it’s not the best customer service model. I had made an unnecessary journey to attend an appointment that had been moved but this fact has not been communicated with me. I then had to make all these phone calls to sort it out. Because I dare to have a life outside of hospital appointments and couldn’t attend the next appointment offered I was made to feel like I was a problem and had to be past on to another person. No one apologised or explained why the problem arose. That makes me think it will happen again. It’s frustrating and I feel helpless. I just have to hope that at some point lessons will be learnt.

The other contrasting appointment was with my lovely ECP nurses at Guys. I arrived and settled in and was bantering with the staff as patients around me.  When they tried to connect my pipes up there was a problem. My Hickman line has always been temperamental but it just wouldn’t play ball. They tried for an hour but only managed to get 300mls of 1500mls out so had to give up. They said they’d try again next day. As you can see from all the bruises they really did try and day 2 managed to get one cannula in. That meant I could have half a treatment. Guys will now contact Kings to work out what to do with the line. Fingers crossed that it’s easily sorted.

So neither of these appointments went to plan but ECP had a problem solving approach to the situation. Whereas rheumatology had the culture of the patient is the problem if they don’t fit with our solution.

It’s about time all departments had patient reps to ensure a patient voice is expressed and heard. The reason hospitals exist is because there are patients. Patients are not a problem. They are the reason for the medical profession and the NHS. Let’s please put patients at the centre and embrace them as partners and equals.

I’m doing all this on top of feeling really tired. I didn’t get out of bed till noon today. I haven’t done that since being a teenager. Lol.

Really hoping the extra digging that my lovely haematology team have been doing will come to something and we get some answers soon.

Wherever you are and whatever you are struggling with please remember that if the world is silent on an issue then one voice can be very powerful. Xx

Weird Times

I’m having a bit of a weird time of it just now. I feel really exhausted. I slept 12 hours last night and still wanted to nod off when I was having my ECP. It’s so challenging to have a tiredness that resting doesn’t improve but that you also can’t shake off. When other people say to me “ooh I’m so tired” I just nod and smile and think if only you knew what this invasive exhaustion was like. Never mind. Worse things happen at sea!

Despite my exhaustion and aches and pains the high dose steroids are helping in some respects. I don’t have that awful stomach pain. Just the occasional dull ache which is nothing compared to how it was. Let’s hope that as I ween off the steroids that the pain stays away. It’s also nice to have an appetite. Not something that happens to me often.

The other thing that is getting to me is the weakness in my legs. I’m really struggling now to get up my flight of stairs. I’m having to haul myself up on the banister. I also get really out of breath. I find myself sighing often and taking long deep breaths. It’s weird. As a chorister, I’ve noticed my breath control is poor and I’m not getting to the end of the line. I’m utterly convinced a 95 year old has run off with my body and is having a great time. The only problem is she has left me with her dilapidated body to make the most of.  I shouldn’t complain. At least I’m still breathing.

My full blood count is pretty good just now. This is also weird as last month it looked like my transplant had failed and there was talk of me needing a second transplant. I like to keep everyone guessing. Whats causing me grief is my U&Es and electrolytes. It seems my kidneys are not happy and need an eye kept on them. The other thing I’ve noticed is my blood sugar level is a bit high. Maybe it’s my lunch. Will see what it is tomorrow morning. It’s currently 11.7. The last thing I need is diabetes on top of everything else. Let’s hope it’s just a blip.

For now I’m gonna pretend everything is fine and dandy. Whatever will be, will be.

Have a good weekend one and all wherever you are at. I encourage you all in the philosophy of preparing for the worst, hoping for the best and living in whatever the reality is. I’m especially holding in the light Nick and Marley and all those who watch and wait.