Thankful

I really don't know if this blog post will make sense, I seem to be on oxygen most of the time, and my morphine / paracetamol drug taking has increased as I feared it would.

For a few hours I can feel fairly ok, ( coughing aside , I am so TIRED of coughing). It's exhausting , it's annoying, frustrating and debilitating .
I've just had two hours sleep before the coughing woke me up. I have to sit almost upright, which in itself becomes painful on my backside ( where I seem to spend most of my day). It can also be frightening if I can't get my breath, breathing is so important don't you think ?

I deviate from the title of the post, this is really me saying how overwhelmed ( understatement) I am with the daily ( yes daily) texts/ cards, messages and emails I have had from all you lot. It is truly humbling , and I feel so fortunate that I can read ( often through tears the lovely things you say about me)
Totally untrue of course, but well meaning with their intent .

I'm glad Tom was able to write the blog last night, I just really didn't have the energy, words or brain power, and as is my wont, I try to lighten the tone. Humour , particularly of the black sort, at the minute carries me through, but I am also a realist and my situation is grave. Oh dear, there I go again.

Sunday night, after feeling wretched all day, I had a few good hours in the evening , Tom reckons it was the morphine that gave me the "munchies' and at 8:30pm I sent out a message to the family that I fancied some chips, not something I normally do.
A phone call from my daughter checking that I was for 'real', and an inquiry to the ward sister that it would be OK . Forty minutes later at 9:10pm my daughter ( after making her dad drive around St Helier) races into the ward, bearing chips, vinegar and ketchup . Now that's love.

Chips and Poldark..... A perfect combination .

I was looking forward to the "Night time Show" and I wasn't disappointed . All the grannies were asleep early, this was so they had enough energy later on to keep the night time staff busy.

Mrs La La by the window ( bless,she had been very uncommunicative and a bit of a concern ) had rallied around enough to gabble the odd meaningless phrase across the ward at random times of the night.

We had entertainment with "The commute of the commodes", this was accompanied by at least two nurses each time trundling past and decked out with plastic aprons, gloves and set looks on their faces.

The best of all, was the poor lady next to me, who was due a colonoscopy today and so had to drink the vile medication in order to empty her bowels .
In order to save her the frequent trips to the toilet in haste, she had a permeant commode set up.
Unfortunately for me it was 6 inches the other side of my bed, behind the curtain. I don't think I need to say more.

I know I'm ill. If I get a chance to look out of a clear window ( most are frosted ) instead of longing to be outside in the sunshine and freedom, I find myself indifferent .

I have become institutionalised, trapped in the twilight , bleeper buzzing, world of hospitals. Desperate to be able to ease the swollen, leaking legs, to be able to breath cleanly without oxygen. Any minor effort takes up huge reserves . I am talking ridiculously pathetic stuff.
I can't bend down to pick stuff off the floor, coughing spasms , I turn to adjust pillows, coughing spasms . Talking too much, too long, too quickly, or not talking, results in yet more coughing.

My best friend has been over for the weekend , luckily we managed a few hours in the middle of the day Saturday to get out, otherwise she has visited me in hospital , not what we both had planned. So wonderful to see her, but equally so sad. I was impressed with her 'I'm not crying' stance on Saturday , but even she succumbed on Sunday... Fat lot of use she is as a friend........

My other best friend whilst texting and offering help, continually in the background but knowing that visiting and chatting is exhausting has kept away. I can see why my family are closing ranks .. They are like the mafia , but for my own good. I don't have the energy to argue, and anyway they want a piece of me.

I've no idea why, I'm self centred ,often found moaning, and coughing, with legs that feel like they're breaking open .

I had a blood test today to see if the 2 X antibiotics have brought the infection down, I haven't had a temperature since I've been in here , it's not surprising with the amount of paracetamol I'm popping.

The vein In my left arm 'popped' last week and is now useless, my right arm has the cannula in. She tried to take blood from high up my arm and failed, took it from my hand instead .

I had an ultrasound on my huge belly, not really any fluid ( what is it then?) but I have three gallstones , great . Dormant , so not to worry...... Anything else ???

Oncology came to see me, will take bloods tomorrow ( through the port ) and if good go ahead with increased amount of chemo. My HB has really dropped from 10 to 9.7, so will add to the tiredness and shortness of breath I would think .

I'm stopping now as its 2:45 am, and I've been awake an hour, this post will need a re read in the morning.

It's now 11:55 on Tuesday morning...and this is Steve adding a few lines. I've come up from the big house in the Royal Square to be here when Dr PS the respiratory expert comes to say hello. Jill is short of breath..everything is a big effort...and we need to see what we can do. Chemo isn't happening today...NB came in earlier and wasn't as impressed with Jill's performance as he was yesterday. Appointments have been made for next Monday...blood tests followed by decisions.

Jill is now off the intravenous antibiotics and just on pills. This will make some decisions much easier to make (or more complicated, depending on how you look at it). Without the need for IV we don't actually need to be here on on level 2 of the old granite block....we can be elsewhere....but which is the best option. Hospice are looking to see if they have a bed we could have for a few days. No doubt the wonderful TF will be around later to tell us the art of the possible. Alternatively we could go home....and in some ways this would be great...but in other ways I'm not quite sure if we are ready for home yet.

Jill's breathlessness is a real challenge....but we've been in challenging spots before. This, however, is tough...the coughing isn't continuous, but it is really really wearing. It's been a long time now and Jilly's exhausted by it all.

On the brighter side...she's just managed a visit to the ladies without assistance from me (she nearly punched me when I suggested it) and I also think that her legs are ever so slightly improve this morning. My positive take on this is that, without having to fight the infection, her body is making a little more albumin and absorbing more of the fluid back into her system...hence the regular visits to the loo. As much as the "visits" are a bit of an event in their own, let's hope they continue!

Right, I think it may be time to post this blog so everyone knows where we are. I'm sure everyone will appreciate that visiting for everyone except family will have to continue to be norm for a little longer still. We are all so grateful for the love and support we are receiving from all around....no doubt there will be another post very soon. Jill's going to read what I've just put....she says she doesn't trust me......

Our heartfelt condolences go to LT down under. We can't really put what we want to say in words, but we all hope the funeral was a celebration of his life, the proposed family arrangements and contributions sounded like they were going to be truly wonderful.














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