My Humming Bird Has Flown

Malina died peacefully a little while ago. Her family and I were with her.

Thank You

From Malina,

"Thank you so much for all the messages, prayers and love."

A Good Night's Sleep

This is Bob writing. A great deal has happened since Malina's last post. She went for a second drain yesterday and also saw the oncologist. It's bad news. Malina is very poorly and her illness is progressing much too fast. The alternative treatments we believe in so much are not working quickly enough and now she is too ill to continue them. Today Malina is going to St Julia's Hospice so that her last few days are as comfortable as possible. We took this decision together and we have absolutely no regrets trying what we did to heal her body. Only a miracle can heal her body, her soul, spirit, call it what you will, is fine.

A huge week of fast and prayer

There are a thousand people around the globe who are going to fast and pray for me for a week, starting today, Saturday 18 Feb.

We are asking for my complete healing and I am expecting a miracle. Yes, I am.

Please, join us, if you feel so inclined and leave a comment below to let everyone know!

Apologies

I have had many sweet letters, texts, phonecalls, emails and offers of visits which I have so gladly received. I am sorry to say I am very behind with replying to everyone. Please do not take it personally if I haven't gotten back to you, I have really had a tough few days. While I used to find it difficult to walk etc, now I sometimes find it difficult just to be, or sit, or lie down. I tire very easily so please bare with me.

I am also sorry to say that, at present, I am not well enough to receive visitors.

Drainage

As you know, on Wednesday I had a procedure done to drain some of that water that makes me look like I'm 17 months pregnant. I was given a lovely, comfortable room this time and all my nurses and the doctor were availale any time I needed them. I was definitely well looked after.

Unfortunately once the drain was in, we realised almost nothing was coming out. The doctor played with the tubes, I massaged my stomach, moved positions but still, the speed was alarming. Apparently they have never seen anything like this.

We were hoping to drain 5 litres in about 5 hours but by lunchtime I only had 500ml. Eventually, after my doctor played with the tubes a bit more the fluid started flowing. We realised it worked best when I lay flat (ouch) and pressed on my stomach in a specific way. By the end of the day - after we were there for 9 hours it really started going but sadly, it was time to go home. The ward where I was seen is not open overnight, all the patients were gone but me and our nurses needed to go home. I pleaded for an extra 10 minutes because I was so disappointed that weeks of waiting and this long day would only see me half finished. They let me stay a few more minutes and I was happy my stomach was visibly smaller, having lost 3.5 litres of unnecessary fluid.

Unfortunately I was feeling very unwell then (I guess from lying down flat for too long) and had a very painful night that night. I wasn't all better on Thursday. I was so weak I could not get out of bed and even talking was too much effort.

Friday was particularly disappointing when I realised that my stomach had filled back to its previous size. I have no idea why. I am going to request another drain procedure in a couple of weeks, hoping that it will go smoother, now that I know how to deal with it.

17/2

Today, I am grateful for the beautiful people in my life:

1. My number one fan Rob who never stops. He does everything for me, from preparing my juices and food, to making sure I take all my 40 tablets a day, from helping me shower to keeping my spirits up and oh so much more.

2. Rob's parents who came down for 4 days to help us out. As always, we made full use of them. Aaron kept them occupied from dawn to dusk and they did some gardening for us as well as cooking and cleaning to mention but a few things!

3. Sharon, Gillian, Laura, Helen, Paulette, Lee-Anne, Georgia, Heather, Bunnies and other friends who keep helping us out with Aaron and tasty meals.

I love you all.

Morphine

I'm coping with pain a little better these days. A combination of low dose steroids and paracetamol, ibuprophen and occassional cocodamol is enough to keep the edge off. I know they say take it all regularly to prevent the pain in the first place because playing catch up can take a lot of time. However, I don't subscribe to it, I do take steroid regularly but prefer to keep the rest of my meds to the minimum.

A couple of weeks ago I tried morphine. I was really desperate for a good night's sleep. I just wanted to knock myself out so I first took half a dose which didn't do much for me, then topped it up with a bigger dose and went to bed. Yes, the pain was almost gone but wow, the sleep I got was awful. It was shallow and I was tormented with the same dream over and over again. I was hallucinating and nauseous.

To top it off, I was still nauseous and vomiting in the morning. Overall not a pleasant experience and one which I hope to never repeat.

Assessment

I went to the hospital today to be assessed for an Ascites drain. I was literally crying with relief when they said I had 6 cm of fluid that definitely qualifies for immediate drainage. Tomorrow it's an early start, 7:30 am I'm off to the hospital and the bed is already booked (so no waiting!). I will spend a few hours there and hopefully by the end of the day I will feel some relief.

The last few days I've been feeling very unwell. I have so much prssure in my stomach that besides the pain, indigestion etc, I also have breathing difficulty and I cannot walk. I even struggle to walk around the house. My belly is so enormous I cannot stand up straight and Rob's mom says I look bigger than when I was at the end of my pregnancy with Aaron.

I so hope the drain brings me some relief. Of course I know that most of the pain I have is from my liver and not the fluid but still I can only feel better after the procedure.

Just a brief word from...

It will only take you a moment to realise that this post has not been written by Malina.

Malinaday was just incredible and I didn't know how else I could pass on my thanks other than brief editorial control of my wonderful wife's blog.  Yesterday, once again, showed what an incredible group of friends we have and the support we have been shown since we embarked on this journey has been truly humbling and something I wonder if we will ever be able to repay in full.  Certainly it is something we will never, ever forget.   Our families and friends have done so much for us already and yet on the toughest of days they just dig deeper still and you cannot underestimate the difference it has made.

But it goes beyond this.  We have had support in all shapes and sizes, physical and spiritual from complete strangers.  I also could not ask for a better employer.  The Royal Navy and the Fleet Air Arm in particular, has bent over backwards for us.  I truly believe we have witnessed the best of human kindness and community over the past few months.

Thank you all so much.