Jasmine Stalker-Firth

We bought Jasmine a medical kit the other week and she is obsessed with it. When she wears the stethoscope, which is all the time, she coughs when she puts it on your chest, or foot, or wherever she wants to listen. She is hilarious.

Today Neil took Calista out, and Jasmine and I were alone. It was lovely but weird because for the first time all I had to do was play with Jasmine – no machines, no vomit to clean up, or anything. We did some jigsaws and some cube building and she listened to my chest and coughed to see if it was clear and then we had a drink of water and we put some milk down her tube (she has to push the syringe herself). And even though we had had a bad night – Calista was out of sorts and we were all up until 2am – there was no telly on today, which is what we used to do when we were really tired, as we had to conserve our energies for the medical stuff. Now I can use what energy I have playing with Jasmine and it is great.

The community nurse rang up yesterday to see if Jasmine’s nappy rash had cleared. I really do wonder what these people do all day. Nappy rash! I told her that I really wasn’t worried about Jasmine’s bum and no she didn’t have a rash and that was six weeks ago, and she has had two surgeries since then. So she asked if I wanted anything else, I said that I needed some 5mls syringes. Today, she dropped me off 20 (and that was after I had insisted that I didn’t need her to come round and look at Jasmine’s bum and could she please leave them with the concierge). Twenty syringes is, for us, one day’s supply. So I rang up and had a big fit as I cannot believe that someone would bring me one day’s supply.

I think I have got post-transplant stress. Now that the big things are calming down, the little things are becoming a big deal. It was the same in clinics the other day, we had to wait over 45 minutes before anyone did Jasmine’s blood pressure and weight (which is not unusual in clinics) and you have to have that done first before you go on and see the renal team so you are just stuck in the waiting room, losing the will to live. Anyway, I complained and moaned and generally didn’t behave myself and I have felt bad ever since.

So, when I was moaning today down the phone to another community nurse, (the nurse who had left two – alright 20 – syringes with the concierge had gone home at 2pm), she said that I should get some respite – basically, a nursery nurse would come round to play with Jasmine (Jasmine, only as she is on their chronically ill list – actually the nurse called her disabled, but no one would keep an eye on Calista, as she is not on the chronically ill list). She said that I could go shopping with Calista.

Now, that isn’t my idea of respite, I hate bloody shopping, and it is the usual sort of nonsense we get from the community nurses. My idea of respite would be for me to get an afternoon nap. Or, I would want respite from doing medical stuff, not playing with my child. But, we have been through this argument with the community nurses before so I give up. They never give us what we ask for, only what they think we should have. I won’t even start again with the nonsense they offered us when Jasmine was on dialysis, but it didn’t include them doing anything medical.

And, it was the same after transplant, when we asked them for sterile gauze and sachets of water to wash her wound. Their response was to pester the ward, then our doctors, and then the chemist, and then we got sent round some saline solution and some wound packs which had plastic gloves and aprons in – no sterile gauze or water.

One of the nurses told me once that their job is to support mothers (note no mention of fathers) and save them a trip to the hospital. I would rather a trip to the hospital any day of the week to pick up my syringes and sterile gauze, as I would get what I want and I wouldn’t have to put up with a load of nonsense and find room in my house for medical supplies I don’t want.

Neil has just asked me if I am typing a festive blog and I have said no, I am slagging off the community nurses. Twenty syringes I ask you! I would laugh if I wasn’t so annoyed.

I am so tired. I feel like I have just woken up from some long medical nightmare to see us all with big scars on our stomachs and I felt very sorry for us. I know I shouldn’t, I know it is great that we are all at home wearing our war wounds. But, tonight I feel older and sadder and changed, and sadder still that we had to do it alone.

You always hope that in a crisis people would step up and become great troopers, but they don’t. In a crisis (your crisis) people are stressed and behave how they always behave, but worse, because they are stressed and in shock and tell you that you are so brave, so self-sufficient, so capable, or they are so busy with their own feelings they say horrible things. So, you are left alone to get on with it, in quiet desperation. Whilst everyone is busy stressing and wringing their hands and talking nonsense, you are alone at the sink, scrubbing your hands, or up in the middle of night mopping up puke, afraid, wishing that someone would come and give you some comfort.

We have a week off from clinics, which is great and which is probably why I am feeling the way I do. It is the first time, in a long time, that I have space to think.

Jasmine is looking great, Neil is feeling sore, Calista is chewing like mad on everything, and I am feeling really bloody angry and weepy all at once, but it is time to give her the tac, so the way I feel will have to wait, which is a good thing, hopefully when I get round to thinking again, I will have let it all go.

This entry was posted on Thursday, December 17th, 2009 at 9:46 pm and is filed under home. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.