I suppose the purpose of this blog is to chart my journey from the hospital to home and keep you all informed of my progress, so that we do not have to keep telling everyone, I especially feel that it has been my job to shield Mark and the girls, as this way you all hear it from the horses mouth, as if were. It is not easy when you are unwell to write this and I am so appreciative of all the kind words and messages from you all and I do hope that you understand why I do not always reply.

Mark has been working and visiting me, getting himself food and coping with the every day life at home that I usually deal with, he has had multiple offers of food and entertainment but finds it easier to just cope on his own with the girls. Isabelle and Tessa have been marvellous.

It is wonderful to be home again, and I think it will take me a long time to bounce back to my normality. However now this huge foreign body is out of me I will be able to get on with my life without pain, I expect a lot of my recent discomfort was down to this and it will be easier without it. All the drains and lines have been removed. On a regime of pills for a while.

As for visitors I think none until next week, so one step at a time, then please call.

I don’t expect to blog that much going forward.

25/7/19

Yesterday I had the procedure of interventional radiology where they put a probe up the drain in my side and inject die and then see on an x-ray if the bile if dispersing where it should. It is most uncomfortable.

I am delighted to say that it was all free flowing in the right places, and as a consequence they took the drain out. This is almost overnight alleviated the pain I was in, which makes sense.

So I was told that if the output from the drain hole was ok, then I might be able to go home today, and this morning it is dependant upon my blood results. So if my various levels are going in the right direction and there are no signs of infection then I am off home this afternoon. I have to have a central line, a picc line and another drain removed and then I am good to go.

I just cant wait.

Last night we had tremendous storms here with thunder and lightening, I expect it was all over the south east. Despite that I slept pretty well.

So after the first pains on the 25th June and being in hospital from the 30th June I am going home on 24th July!

It will be strange.

Today I am going to have another look see at my bile duct to see if it is working correctly, with an intervention radiology procedure. If they find the bile is flowing correctly then they will take out the drain. Fingers crossed it is as that means I can leave the hospital and go home. My first pains were on the 25th June and I was admitted on the 30th June so it will be nearly 4 weeks in hospital. As you can imagine I am keen to go home. I feel better today, but I have been told it will be a few weeks of no driving and two months of rest and recuperation. I have been grateful to have the central line in my neck and the pict line in my arm which has meant I needed no cannulas, but look forward to them coming out. Following the mismanagement on Saturday I have had a word with the matron who is going to look into it.

Quite a stream of friends came to visit yesterday which was lovely and today it is just Mark. I find my concentration wanders and that my eyes glaze over which is apparent to others, and so I can only cope for so long. I expect our cat is going to love the fact I am at home and in bed!

I wont be leaving today, but fingers crossed it might be tomorrow.

23/7/19

Yesterday started well as I had had two good nights sleep in a row and it looked like I was getting better, the staff, and doctors were talking about me going home on Sunday and I did not really have much to write about, so I did not do a blog.

Then I got another piece of good news, the problems I have been having with my digestive system over the last 18 months could be explained by the operation I had. In the operation Mr. Tim Worthington repaired two fistulas one from the bile duct to the duodenum and the other from the duodenum to the colon. This meant that the bile which should travel down the bile duct to the small bowel and then round the system helping the body to absorb fat could not. The bile is then reabsorbed in the ilium which means it is recycled constantly. Mine was going straight into the colon, thus not absorbing fat. It also had the secondary function of arriving in the colon making the gut at this point absorb water and increase the volume of bowel movements and frequency. This answered a lot of the questions I have had on my diet and wellbeing. So with this operation I could be cured.

After this I went down to the interventional radiologist to be scanned and they were looking at where the bile was now going. Unfortunately (a bit of an understatement) the bile was not flowing out of the liver as the join/repair at this point had swelled. It meant that he had to use a small balloon to dilate the opening and keep the drain in to get rid of the bile. I was devastated, as yet another complication has arisen, and I have to wait in hospital until next Wednesday at the earliest to have another test for this to see if this is working. I am staying as an inpatient at the Private Hospital, The Nuffield Guildford, but the procedure was done at the Royal Surrey Hospital. They are linked by a tunnel so I just go down in a lift and then wheeled along corridors to the operating theatres. I have not been an NHS patient here in Guildford only Private as there were no beds. The journey between the two is about 10/15 minutes which I spent sobbing as I was in pain from the procedure and I was so upset with the bad news. My nurse had come down to get me. She is a great nurse on the practical side, but it took 10 minutes for her to enquire if I was ok. A friendly acknowledgement was all I needed and she seemed simply incapable to doing this. It made it worse.

I am in the same situation I have found myself in before where pain medication runs out and I am wide awake overnight as I am not due more pain relief and the pain relief I have at the moment is not enough. I spent an hour talking to the senior sister and she said she would sort it out for me and write it up for the nurses so I did not have a dip – it was awful at 10 last night an now at 4.30/5 am I am in the same awful pain. Why cant they try to get the medication right so you always have some covering the pain. So today I am going to get it sorted once and for all, I hate being in so much pain unnecessarily.

For those of you who are reading this every day thank you for your messages of encouragement and support it means a lot.

20/7/19

Yesterday was a really crap day on many counts, I had had a very fitful sleep and consequently was grumpy, not up to doing anything but I had a nurse who was on a mission to get me drinking, moving and it was all to much. I do not respond well to being harried. So a bit of a battle of wills. So by the end of all of this I was very tearful and depressed.

I am hooked up to lots of monitors – at night I am being fed by TPN to give me some optimal nutrition through my veins, hourly observations, I have an epidural in my back giving fentanyl and a concoction of pain relief in my mid thorax band covering where I had the surgery and it is very effective. On top of that I have voltarol and paracetamol for pain. I am also having a multi vitamin, antibiotics, stomach lining drugs, creon for absorption of food, Piriton for itching, amitriptyline for back pain and sleep. So rattling!

In order to go home I need a scan to see if the bile duct is working as it should, and I need to be disconnected to all the drains, pumps and feed, but Mr Worthington thinks it might be early next week or even Sunday.

The surgery was pretty major I now understand.

I am up for receiving visitors if anyone wants to come let me know.

18/7/19

Yesterday, 16th July, I had my operation at The Royal Surrey Hospital to remove the gallstone and my gallbladder. So I can now get on with getting better and going home, hopefully soon! However it is minimum 3 days and maximum 7 days. I feel surprisingly good, but I am still on an epidural and so have massive pain killers and feel little pain. Last night I was having hourly observations and so had a pretty disturbed nights sleep, but I reckon I got 6 hours of broken sleep despite hourly observations and sleeping sitting up, and feel remarkably ok today.

So, for the gory details so if you are of the persuasion that you would rather not know skip this paragraph! I have lots of complications, I am very different inside to the normal as I have had bariatric surgery to have a stomach bypass, I have had a third of my small bowel removed with the tumour last year, I have adhesions and had a lot of scaring from the fistula last year. Added to this I had an anaphylactic shock reaction to the general anaesthetic last year and was prick tested positive to all muscle relaxant drugs, all three families of muscle relaxants. Plus the gallstone was massive (5cm) and blocking my bile duct and had caused a bleed in the hepatic vein near the artery. So a lot of planning went into my surgery. They managed without the muscle relaxants and when Mr. Worthington operated on me he had said if it was really bad he would have to take a bit of small bowel to replace the bile duct in the worst case. As I understand it, I had two fistulas when they went in, one in the bile duct and one in the duodenum so these had to be sorted, there was a lot of puss around the gallstone and it was all very infected (despite lots of antibiotics since coming into hospital). He removed the gallbladder and gallstone, and then he sewed up the bile duct and the duodenum fistulas. He stitched the site where I had had the bleed earlier in the week. This was an open procedure and I have a neat scar of about 5 inches under my ribs. Post op I asked Mr. Worthington if it had been straight forward and he said it was difficult and not at all easy. As I am under I am blissfully ignorant of it all. I was given an epidural for the operation which they have left at 80% post op, heart monitoring, a drain of the wound, a bile duct drain, a catheter, I am on fluids through a central line which was put in on Monday. I did wake up to two cannulas in my arm and they have been removed. I was in recovery for a while and got back on to the ward to see Mark, he had come in very early to see me before I went down to surgery. So we spent the rest of the day together. I ate well post operation however felt a bit nauseous at supper and did not manage too much. I also feel itchy. The Royal Surrey was chosen as my anaesthetic was so complicated and they had the emergency teams available if needed. It is clever as there is a tunnel between the hospitals and I can go in my bed to the other hospital.

Today the plan is to get me off drips and drains and to x-ray me to see if it is working. I will try to get out of bed and stretch my legs and have a wash – I know that just washing will exhaust me, but it is good that I have an appetite. Mary the dietician came to see me and so has Mr. Worthington, and they are happy with me, I will be on TPN tonight to get as much vitamins and minerals into me, and there has been no results from St. Mark’s, at least she is finding it hard as well. Sadly I was in the best room of the house, however it is in the medical side and I am going to be moved to a surgical room which is not as spacious, boo hoo as the other room was amazing.

I can finally look forward to getting out and fingers crossed not too much pain in the future, I have been living in pain for the last six/nine months.

17/7/19

I am having my surgery tomorrow and have to be at Royal Surrey at 7.30 am, fingers crossed I am first on the list!!

Today I have had a central line put in my carotid vein and so no more cannulas. Whoop Whoop

The aim is to remove the gallbladder and the gallstone, but I have complicated plumbing, a gallstone that has been causing trouble and may cause trouble on the removal and complications with allergic reaction to anaesthetic. So could be straight forward or could be difficult. If straight forward I will be out of hospital best case 3 days and worst 7 days. If it all goes tits up I will be in the Royal Surrey and if it is not to bad I will be here at the Private Nuffield Hospital. …. We will wait and see.

Just so glad the wait is over ….

Beautiful sunshine in the room and looking forward to recovering.

15/7/19

Yesterday was a better day, although I had only had 3hr 45 for sleep on Friday night, however last night I got 10 hours. So 24 hours later it is all a lot more positive.

I am very impressed with this whole set up and the wholistic approach. This I think comes from Prof. Worthington who looks after a lot of pancreatic patients and has found if they are really well and sorted on the nutrition front the outcomes are better. So I am befitting from custom made meals, the chef consults me every day – and the food has been delicious. So I am having TPN which is a complete food with calories intravenously over 12 hours at night. I also have a 24 hour drip, iv vitamins and minerals and I am eating and drinking. They have pumped me full of blood transfusions and I am now looking much less yellow and have more energy. So good nights sleep, good food, blood, liquid and a tailor made nutrition and I feel so much better. There is an underlying pain where they inserted a drain and where the gall stone is but luckily no reoccurrence of the phenomenal pain I had bringing me into hospital. It was without doubt worse than child birth! This is all controlled by a cocktail of pain relief.

I watched the ladies tennis final and had family visitors including my mother and her lovely friend Tessa.

14/6/19

Yesterday as I was writing my blog I was feeling very sorry for myself, and poor Mark the same as it turned out. I think we had both invested so much into getting me to Guildford it was hard to come to terms with the fact I was still in bad shape and that I could not be operated on immediately. However the care I received yesterday and the investment in getting me better has been wonderful.

So my blood levels were low and I have had two of three blood transfusions and I had a drain put into my liver/duodenum to drain the bile. I am still on antibiotics and now the bile is lowering I am able to eat a slightly more varied diet.

So it was a bit of a weepy morning for me as I waited to go to interventional radiotherapy for the procedure until 30 minutes before departure and a dietician came to see me called Mary Philips. When I was in Brighton I saw the nutritional team there and they all spoke of Mary in hushed tones and said if I could get to see her it would be good. As you all know I have been struggling with problems on eating and my restrictions were getting narrower with each procedure I was having. So I had a really hurried chat with her giving her an overview and I think that she is the first person who really understood me and the problems and probable causes. It seems almost life changing. She is on my case now. So before the operation as I have malabsorption problems she has suggested I have a few days of TPN just to get the optimum nutrition into my system, and that now can have whatever I want in the way of eating following the bile drainage.

She is going to look at all my blood tests, and speak to St. Marks who have been doing other tests, and my GP and put together a plan for me going forward to try to sort out my digestive problems. I cant tell you what a difference to me it makes to finally find this wonderful person.

Isabelle and her godmother Fiona arrived to see me after my procedure and that was fine for a bit until the operation painkillers wore off and so I waved goodbye to her. I spent a lot of yesterday in pain with my side objecting to the drain, and I have to say had a bad night. I have a fluid drip into my right arm and TPN into a cannula in my left arm, and a pain in my right side so all in all getting comfortable last night was an issue. I will have the two arms being used for some time to come until the operation and this might prove challenging for my sleep. Mark made it over in the evening. I am up for visitors until Wednesday and then for some days after that, but realise I will be a long way for my Sussex friends. Just let me know.

13/7/19

Mark and I had such a major misunderstanding which I think was for the best in the end. The Nuffield hospital did have a bed for me on Wednesday! But they said to Mark either Wednesday or Thursday and he hadn’t realised this was a choice rather than they would let us know!!

Well we found this out first thing yesterday morning and managed to get all the paperwork signed and me released before 1.30, a whirlwind of a day and the most I have done for the last 2 weeks! To add to the usual complications of being released from hospital, e.g. pharmacy, doctors doing discharge letters, we added into the mix getting all the paperwork of discharging from the NHS to private. I felt better yesterday and I was glad, the day before had been a bit down and so had the emotional energy to tackle all of this. I called the Nuffield to find out what they needed and was told just the financial codes and when I was arriving and was quite surprised. However when I got here the nurse was ever so surprised no doctor or nurse had spoken to them as a handover – it defeats me that this was missed out of the instructions. As I was going to a private hospital and was good to travel, Mark drove me. It was lovely to get out – despite Test Match Special all the way – shades of my childhood! Kept the old man happy.

I am safely sorted here in an amazing room they call the VIP room no 28. I am on my own, which is lovely as I have peace and quiet and can play audio books, podcasts, have as many visitors as I want, but as I am a nosy old cow I actually prefer the hustle and bustle and companionship of a ward, I know I will be grateful for visitors especially this weekend.

I have met my consultant – an tall impressive man called Professor Tim Worthington, who immediately organised a CT scan to check the bleed has stopped, changed the antibiotics, said my bile levels were too high to do an op they are currently 210 and should be 20! And my red blood cell count is too low at 71 and should be 115. So I have had one blood transfusion last night and another 2 this morning and will have a drain inserted into my liver to get some of the bile out of my system at 1. So until this is a bit more stable no operation. This he expects to be next week. The scan showed no more bleeding.

In order to have the CT scan I had to have a cannula put in even though I had a pict line. I told them I was hard to cannulate and they sent in their doctor who is a F2 level Zimbabwe doctor (this is similar to the doctors at the Montefiore in Brighton) and I was worried. To give him his credit he did cannulate me but hit a sore patch in my arm which meant he could not even flush it without causing huge pain. I was in tears and in the room was Tessa and Mark. Tessa is very protective of me and was asking him to take it out came over funny and passed out hitting her head, the doctor couldn’t find the call button so pressed the emergency and the room filled with about 12 people! A farce. However they now know to believe me and I was eventually cannulated with no pain by a lovely consultant anaesthetist.