On 31st October I made yet another trek to the hospital for caffeine infusion number 5. They do work and give me a little relief from the awful pain that is being caused by the cerebrospinal fluid leak. The results of each infusion is different, sometimes I get complete relief from pain for several days other times it is just a few hours. This time it was just hours, with the pain knocked down the pain scale for the following few days. Alas it is starting to increase again.
Although the infusion had been planned meaning I didn’t have to make numerous phone calls to get it booked in, the word disaster would cover it quite aptly. We arrived early, hubby, Sharon (my hospital buddy) and I at 9:30am, my appointment was 10am, so when the nurse ushered me straight through to get the cannula set up I was pleased as punch believing the infusion would be under way quickly and we would be able to get home soon. How silly of me.
We were greeted by the nurse that had an issue with my wheelchair (he claimed it took up too much space) last time, which made me uncomfortable as we had brought my new chair, which doesn’t fold down but is much more comfortable if I have to sit in it for a protracted amount of time. On getting me settled on my usual chair / bed thing he immediately told me that my wheelchair would have to go back into the waiting room, leaving me stuck if I needed a wee. I presumed that the offending wheelchair would be allowed back in with me once Sharon and Jay were allowed to join me on the unit. Yes this nurse also demanded my husband and friend stay in the waiting area until my cannula was in. Why I have no idea but as I was going to be in his care for several hours I thought it best not to antagonise him.
Before any cannula attempts were made, the nurse filled out a medical record form. Every time I am in this unit something different is done, this time I was asked for next of kin and what I was being treated for. The nurse had put low-grade headache, to which I nearly exploded but instead contained my simmering rage and informed him that I had the same CSF Leak that I have had every four weeks since the end of June. I know they have lots of people to remember who go in and out of the unit but they all remember I am the caffeine lady and that I have shit veins to cannulate. So much so that some of the nursing staff actively avoid having me as a patient because my veins are such a nightmare.
Twenty minutes later with one attempt at a cannula made, Sharon came into the unit. The nurse made a face, as to let her know she wasn’t welcome and she stood up to him by telling him something along the lines of “I have come to spend time with Rachel, I am not staying in the waiting room. And can you get me a chair please.” I loved it, as I could see how pissed of he was. She told me Jay had told her to come on in and that there would be nothing they could do. Jay was going to stay with my wheelchair out in reception, as he doesn’t do needles.
Thankfully cannula attempt number three worked (after twenty minutes of having a surgical glove filled with hot water placed on my arm) but I was now waiting for the caffeine to come from the pharmacy. The reason offered was that the pharmacy wouldn’t have processed the prescription that had been completed (4 weeks ago) if it had been sent in on Friday (28th Oct), so they had given it to them today. That was a little concerning as caffeine is such a rarely used drug that I was now at the mercy of the pharmacy having it in stock.
I had seen my neurologist the week before and had asked him if it would be possible to have my occipital nerve block injections. I was unaware at the time that he was the duty neurologist , so he popped by and saw me. He also introduced me to the “headache” nurse who would be able to perform the injections today. I was so grateful I shook his hand as the occipital neuralgia pain had been getting much worse since my last lot of injections ten weeks prior. Again I shouldn’t have got excited as the experience was brutal.
Thirty minutes later (now an hour after I have arrived) the caffeine infusion still hadn’t been started as the caffeine hadn’t been dispensed from the pharmacy, the “headache” nurse came back and asked if I wanted to have them done, to which I agreed. She then produced a consent form, I told her I had never had to sign a consent form before to which she replied “nothing surprises me”. The consent form then had to be corrected as where it stated what my medical condition was it said “chronic migraine”. As she hadn’t seen my notes she had presumed what was wrong with me. That wasn’t the only mistake to be made on the form, after I had signed my name I had to print it underneath. I managed to print my maiden name, that hasn’t happened in years. I can only guess that having Sharon there reminded me of the days before I was married.
This nurse had a totally different approach to the occipital nerve block injections than the doctor who had been doing them previously. The doctor would inject the local anesthetic in 4 different locations, this nurse just did two injections at the base of my skull and rammed them in. It hurt like hell and it was all over in seconds. Sharon was in a state of stunned silence, when the nurse left she said “that was f**king brutal Rach” and she wasn’t wrong. Needless to say I wasn’t impressed, I have been left with pain from the injection site and I still have occipital neuralgia. I have been using my Tens machine placed on my neck and the base of my skull to combat the pain. This is the first time these injections have failed to work, I am guessing it is something to do with the way they were performed.
Jay had now been sat in the waiting room for 90 minutes and was not best pleased that the caffeine infusion hadn’t yet been started. Nor was he happy that a wheelchair that would cost over £2,500 to buy new was having to be left unattended in the waiting room whenever he wanted to come and see me. I could sense he was getting tense so told him to go and pop into his parents, as he doesn’t get to see them very often. I also told him to take the wheelchair with him as I didn’t want my chair to be left in the waiting room with no one keeping an eye on it. He took me up on the offer deciding it was the best thing to do because at this point we had no clue how long it was going to take to get the medication from the pharmacy.
At midday, 2.5 hours after arriving the caffeine infusion still hadn’t been started. Sharon went and got us some lunch as we were both starving. She brought back a delicious pile of goodies so we got stuck in. I was so happy to avoid the hospital sandwiches which are totally vile but I usually end up eating because I couldn’t face breakfast. I have to say that was probably the highlight of the day, the cookies she bought for dessert were divine. Good old Marks & Spencer’s, even the crisps were out of this world.
As I was stuffing my face another nurse came over to start the infusion. She flushed the cannula that had been in situ for around 90 minutes but the vein had collapsed and it felt like someone was pouring battery acid down it. I would now need another cannula inserted. Knowing that he had been defeated by my shitty veins and no one offering to have a try, the original nurse went off to get someone else to have a go None of the nurses in the unit wanted to try, as all of them have at some point and know how difficult it is. I was starting to get concerned that they would abandon the infusion if they couldn’t get a line in, leaving me with ever-increasing head pain and no end in sight.
The ward manager was brought in to attempt to get a cannula in, he was cocky which bothered me as those types don’t listen when you tell them not to dig around if they fail to get a vein. He did however ask me where was good for a vein on my right arm, my left arm was now covered in horrendous bruises that had huge lumps under the skin.
The first attempt failed after looking promising initially by providing a flash of blood, which then stopped. My veins like to tease people by doing this on a regular basis. When it stopped working, I wasn’t surprised and nor were the rest of the staff in the unit. All of them at some point have been conned by my veins. Only two people so far have got a vein on their first attempt and both of those were junior doctors but they were only brought in after several other attempts had failed. He then went for the back of my hand which up until now had been a good place to try as on more than one occasion it has been successful. That one failed, so the tourniquet was applied tightly to my upper arm and I was asked to make a fist.
It seemed that I was doing this for ages when all of a sudden the nurse jumped back, as he did that I lifted my hand up from the table only to realise the back of my hand was soaking wet. When the attempt on the back of my hand had been aborted, there had been no blood at all so the nurse hadn’t bothered to put anything on it. Now blood was oozing out all over the table and dripping onto the floor. The nurse had jumped because he thought he had cut himself when he saw the blood and hadn’t realised it was coming from me. It took a while to stop the bleeding with firm pressure applied. Finally on his third attempt he got a cannula in and the caffeine infusion was started without delay.
About an hour after the infusion had been started Jay came back onto the unit with my wheelchair. The nurse who seems to have an issue with mobility aids was on his lunch, so I told Jay to sit in it whilst we waited for the infusion to finish. None of the other medical staff on the unit have a problem with my wheelchair, there is more than enough room for it, it’s just this nurse seems to make it his mission to make me feel uncomfortable about its presence. Due to the fact I don’t want to have to make a formal complaint about him I have held my tongue however should he start on my next scheduled visit I will speak up. It’s bad enough having to come to terms with the fact I need to use a wheelchair, without some idiot making me feel uncomfortable about its presence in a hospital unit.
Five hours after we arrived at the hospital we left, with the next infusion date booked. This time I have booked it for a Thursday, as the nurse who I have seen since June has told me he will be able to put the prescription in on the Wednesday, so that we should be in and out in three hours if my veins play ball.
My birthday on Tuesday (1st Nov) was a sedate affair as I was completely worn out after the hospital debacle. Jays birthday the following day was mainly spent in bed. We both had really lovely presents given to us and lots of messages on social media. On Sunday 6th November it was Mollie’s 12th birthday. So here is a photo of the old girl, who was thoroughly spoilt.