It's been a funny old day

What a day! What. A. Day.

It's all gone off today. We've had ward rounds, collapsing, homework and the climax of curtain-gate. Hold on tight- it's a bumpy ride! Here we go.

Dr 7 came this morning on the big Monday ward round. He had a new registrar with him as Dr 20 has gone to work at Addenbrooks hospital in Cambridge in the bowel transplant team. (Dr 20 came to see me on Friday before he left and his parting words were "if Dr 7 doesn't sort you out then I guess I will be seeing you soon!" A bowel transplant- now that would be something to write about!)

Anyway, I digress. Dr 7 listened to me explaining that the pain is getting worse, not better. That I'm still not really able to tolerate much food. That I'm feeling dizzy, faint and exhausted all the time. That I'm fed up with all of this.

I have two different pains. One in my tummy, made worse by eating, and another in my rectum which seems to come and go of its own accord with seemingly no link to food or medication or anything.

He suggested that to remove the pain in my tummy I stop eating, or eat only minimal food and resort to full TPN feeding. This is far from ideal but the only other option he could see was to have me eating and dosed up on painkillers to take the pain away that the eating causes. The problem with this is that I would have to take such high doses of medication that I would turn into a zombie. Or a window licker.

 

Unfortunately he has no idea what could be causing the pain in my rear end. He suggested doing another barium follow through to have another look at what's going on inside and maybe another pouch-a-gram where they put a camera up your bum to see what the pouch looks like.

He asked me if I'd ever heard of phantom limb pain, which is where patients still experience pain in the limbs that they've had amputated and are no longer there. He suggested that I could be experiencing phantom bowel pain- that my nerves have retained the pain information from when I had colitis. Therefore the pain I'm experiencing is very real but the cause of the pain no longer exists.

In case this theory is true, they've started me on some medication that blocks the nerves so I should stop receiving the phantom pain signals from them. Again the concern is that I'm going to need huge doses and then will barely be able to function, let alone drive.

Dr 7 asked me to describe the pain in my rectum and the only way I could really describe it was to compare it childbirth. Gents I know this will mean nothing to you but basically it feels like when the baby is bearing down towards the end of labour and you feel that horrible pressure and you think your insides are going to split open. It's like that, but in my arse. Maybe I'm going to have a poo baby. LOL

I emailed hubby to update him on the ward round and he called straight away. He is so angry and upset- not at me but at the situation. Before my op in January he had been telling the kids that 'this was hopefully the last operation that Mummy would have' and that 'Mummy would be fixed and all better'. I now wonder if he was trying to convince the kids, or himself.

On the other hand I retained a healthy amount of scepticism and pessimism because nothing ever goes right or smoothly for me so I expected that this op would be no different. I think I had prepared myself to some degree that there would be problems so now that there are I'm mentally able to cope with them. Just about anyway.

The signal on the ward was rubbish so I went outside to speak with him. I think he feeks that we are being cheated from having a normal family life and that because I will continue to need the line for feeding there will continue to be the risk of line infections. It seems that I am prone to line infections. Apparently some people are but I read about a lady that had her Hickman line in place for 30 years without an infection or any problems. See? I'm just unlucky when it comes to stuff like this.

We spoke at great length and I told him that he had to let go of his anger. We had nobody to be angry at; the team at St Marks are doing all they can to 'fix' me and if he stays angry it will just eat him up inside.

Walking back to the ward the pain in my rectum started. And boy did it start. Within minutes I was struggling to walk and stopping every minute or two to catch my breath. The pain was so intense; worse than I had ever felt before.

I made it back up to the ward and was nearly at my bed when I collapsed. The nurses came running and got me into bed, scurrying around like ants. I had my obs done, pain relief was given and the doctor called.

Dr 7 came in to see me writhing on the bed, in agony, screaming out in pain. I think he was shocked because although I told him about the pain he has never witnessed it. I'm glad he saw it because maybe now he will take me a little bit more seriously and appreciate the severity of the pain. He promised to look back over all my past scans to see if there was anything on the images that may have been missed and to try to get to the bottom of what's causing the pain (no pun intended!)

I spent the next few hours drugged up in bed but after a while I needed the toilet so got up to go. If it weren't for the patient in the bed opposite being so quick then I would have hit the decks. The nurses came running for a second time and got me back into bed.

The pain nurse happened to be on the ward and came to see me. She is the identical twin sister of my Stoma nurse so at first I was confused as to which one it was. Every time I stand up the room spins, my eyes go funny and I start to wobble. She said that it was the classic signs and symptoms of vertigo and I am now not to leave my bed unaccompanied. Great.

Tonight I rang home to speak to Hubby and the kids and it was obvious he was still stressed. He was trying to get Big Girl to do her homework and she was refusing point blank. The thing with Big Girl is that if she thinks something is going to be difficult then she won't even attempt to do it.

Tonight's homework was English, her least favourite subject. She had to write a Haiku poem. I didn't even know what it was and had to google it! (It's a style of japenese poetry characterised by verses of 3 lines. The first line has 5 syllables, the second has 7 and the third has 5. See, this blog is educational too!)

In order to get Big Girl to do something like this you would have sit next to her, talk her through the homework step by step and have bucket loads of patience. And tonight Hubby didn't have the time, the patience or the energy to do this.

She wanted to write her poem about a sloth so I told her to go and write down 10 adjectives relating to the animal and its habitat while I had 10 minutes talking to Big Fella.

After having the rules of Stuck in the Mud which he had played at break time described in great detail we chatted about his lessons today. He informed me that he had done maths, when I asked what he'd done, he replied number work and when I asked the same question about English he told me writing in a tone of voice that told me that he thought I had just asked the dumbest question ever!

I then spoke to Big Girl and listened to her 10 words. She then had to work out how many syllables there were in each word and make sentences using the words. She was whinging and whining about being too tired to write and that her hand was going all funny and she couldn't write properly so I told her to tell me the sentences and I would write then down. I would then text them to Hubby, he would write them out tonight and in the morning she would copy it into her homework book in her best writing or else she would lose Cubs this week.

Here is her poem- I think it's not a bad effort for a little girl and a drugged up mum!

WHO AM I?

Lives in the jungle

Is really lazy on trees

Where it is raining

The trees are massive

With very big, long branches

The leaves are dark green

Moves very slowly

It's movement is slow as ever

It is calm and quiet

It is browny black

Its fur is soft abd cuddly

Like a teddy bear

But with big, sharp claws.

Can you guess who I am yet?

I am a big sloth.

Right after the highbrow poetry I'm going to take you down to Jeremy Kyles level now and tell you how curtain-gate came to a conclusion today. I know you can't wait for the final instalment in this thrilling saga!

Crazy lady, or K lady as I will now refer to her was seen by Dr 7 today too. Now I don't know what he said to her but I'm told it resulted in her discharging him as her doctor (not sure that's something you can even do but she is a bit crazy) and going into a mega strop. She was in such a foul mood that she didn't want to talk to anybody in D bay so she drew the curtains round her bed. Yes, that's right. She drew the curtains that she had spent the past few days refusing to have closed because of her claustrophobia. Maybe she's cured now?!

K lady then went into a hissy fit and was shouting at the nurses and threatening to discharge herself. Personally I would have let her go! I'm sure the ladies in D bay would have even helped her to pack.

At this point the St Marks psychiatrist was called up to the ward to go and speak to her. They went into the clinic room and when she came out she stormed into the bay and started having a go at each of the 3 ladies, screaming and shouting, effing and jeffing.

The sisters, the doctors and the ward manager went in to try and calm things down but K lady had gone too far this time and the other 3 ladies were refusing to stay in the same bay as her as they thought she was crazy and they felt vulnerable going to sleep etc with her there.

The solution was pretty simple. The IFU ward has 24 beds but can actually only take 20 patients due to the numbers of nurses it has. This means that there is always a bay empty which often gets used if a patient needs to be screened or has a contagious illness/disease.

It was decided then that the 3 sane residents of D bay would move into E bay leaving K lady to have D bay all to herself. That way she could have the curtains just as she liked them, have the windows open day and night and go about her crazy ways without winding up or intimidating the other 3 ladies.

Interestingly when she realised that it was actually going to happen she started sobbing saying that she didn't want to be in a bay all by herself; that she would be lonely. She asked one of the ladies to stay with her but she said no. Not surprising really as 10 minutes earlier she K lady had told her to go fuck herself. So there you have it. All that drama over a bloody curtain.

I do have a little bit of good news too. I had a few carrots with my rice yesterday and today and think that I might be able to add carrots onto the good list.

It's been quite a long one tonight and my finger is sore from tapping away on my phone screen. I will add that to my list of ailments!

NB x