I have now had two days of being switched off the TPN feeding system into my vein and so it gives me a sense of being normal. I am feeling very well and I am surprising my visitors with how well I look. I think if I had just had the operation and not the fistula complication and I had been at home I would be well on the way to a full recovery, I am moving easily and sitting up. Thank you Diane all those abdominals are really engaging and working well, I really had not expected to sit up for a while. My only thing is that I get really exhausted by the slightest effort.

Another indication of being a bit better and more independent is that I have been moved ward. I had been in a bay of 5 beds everyone was pretty poorly and needed a lot of attention, help getting to the bathroom, and general nursing and now I am in a ward of 12. The difference being everyone is needing a lot less nursing so surprisingly I got a much better nights sleep, 7.5 hours.

SO I AM IN MILLENIUM WING LEVEL 9 EAST, BAY 3 AND BED 2.

It is a bed with a view over Roedean and the sea. And this morning a seagull was perched on the window ledge.

Opposite me is a lady with the same as me, she is on TPN feeding too and has been here for a long time, and it does look as if she might have an op and then if that does not work she will have to go home being fed on this system for life.

Thank you to the army of friends who have made food for my family, Mark has an impressive collections of casserole dishes stacked in the kitchen for collection and so if you want to come and pick them up. I cannot tell you how grateful I feel to those who are supporting at home, whether it be a dog walk, cooking, and Margaret for keeping the house going as always. Mark’s family are always great in a crisis.

I am looking for someone to walk Maggie and Poppy on Tuesday and Friday next week if anyone is available.

Yesterday I was unhooked from my machine at 2pm, I had a pretty steady stream of visitors coming to see me so it was lovely to have the opportunity to move freely. Everyone is shocked as to how well I look considering all I have been through, so if anyone is still worried about me they need to see me to be convinced that I am making a quick recovery from the surgery – with the fistula being the only thing keeping me in hospital. If I could eat then I would be well on the way back to normal.

The healing of the fistula is dependant upon the hole that the digestive products were escaping from to heal up and then the fistula – the consultant likened it to a leak in the plumbing, you know when you have a burst pipe in a roof, the stain on the ceiling below can be coming down the wall not quite below as the water has found a channel. So a fistula is the body finding a new way of getting rid of things it does not want and it finds the weakness and exits there. This is what is happening and it is at the very top of the scar just where an underwire bra sits. I can foresee this being a problem for me. The way it gets better is by the body closing the small gap up and the flesh going together to close the fistula. So my diet is being fed through my IV and it is taylor made for me, to the last 0.00005 g of manganese (I have no idea if this is right but you get the idea); it is all dependant upon my blood results and made to be the optimum nutrition for healing. The other great thing that happened is that I have been weighed and I have lost a stone – I swear it was the other night when I went to the loo on the hour every hour!

So what did I do with my new freedom, I jumped out of bed the other side from my drip!! Changed clothes and walked unencumbered with the drip stand. I had only been given a short notice so have no outside clothing. If anyone is able to collect some clothes from Inholmes and bring them into hospital I would be grateful, today.

It is so very lovely to see my extremely lovely friends who are turning up despite the weather and I do so appreciate your company. I do reiterate I lack for nothing so pease do not feel you have to bring me something – it is your friendship and company I want. Not to say I am not grateful for the lovely smellies, and magazines and things.

Today I hope to be a little bolder.

I was going to write about the routine of the day in my life in this hospital, but it was not going to be very interesting and I did not think anyone would really want to read about it. So I am not!

This feeding system is a system designed to keep people with a failing intestinal tract failure alive and as I am leaking at the top I am one of those. The aim of the system to give you everything you need to live through your veins and thus bypass the digestive system altogether and to do this at the start you are plugged in for 24 hours, but as I am meeting the targets they are happy for me to start the process of winding down the hours, so today I get a break for 4 hours and from Friday it will be 6 hours so it means that I can be picked up at 2 and brought back for 8. I can go home!!!! I am so happy with the prospect, although it will be awful to have to come back to sleep, however how lovely the prospect of time out will be.

We have been given some sort of diagnosis, but it is being checked and my consultant says it often changes. So I will let you all know when I know for certain and what the treatment will be. This however will be next week because it has to be discussed with a Multi Discipline Team and they meet on a Wednesday and so I expect it will be Thursday and Friday 8th or 9th March.

My nights and days are in the hands of my own body and those I share my ward with. Currently we are in the Gastrointestinal unit and 4 of the 5 beds are taken by gastro patients, and we have remained the same since I came in.

One 85 year old deaf lady who really sleeps unless she is woken for meds and seems cared for by her two children and is poorly.

One 65 year old Coptic Christian with a huge family, she is settled here from Sudan. Every visiting time there are at least 7 people there which pisses me off as there is a visiting policy of 2 per person and from 3-8 and I have been trying to stick to it. So I did not get to see Isabelle who could not do the visiting hours and she has people in all day!

A middle aged lady who has already been on this ward for 31 days and seen everything. She, like me can get out of bed unaided and is not too much bother.

However, currently, the fifth bed is filled with a 96 year old who is garrulous, she should be on another ward as she has broken a wrist, and is convinced everyone is trying to assault her. This has gone on for 24 hours and she is constantly shouting for help, trying to rip out catheters, cannulas, climb out of bed. But it is the shouting that went on all night is the worst.

I waited all day yesterday to get the results of the tests on my tumour, they are doing a further set of tests to determine so I will get an answer soon. However I will not have the resolution of a multi disciplinary meeting on Wednesday and then I will share the findings with you. It was not a good 24 hours for stress, lack of sleep and coming to terms with what life is going to be like for at least a week more if not more. I need to pee every hour so this disturbs my sleep too!

The staff are amazing and patient, they cannot do anything about shouty aggressive patients, who try to bend fingers back as they go about their jobs.

It has snowed overnight and the busses have stopped running. The nurses have set off by foot from Hove already for the hand over.

I am all out of words today. Back tomorrow.

Most of the emails, FB messages, texts and visitors ask me how my family are coping. It is always a hard one for me to evaluate as I see the image they are giving to me and visa versa. So on that basis we are all doing very well.

However, as we all know that could not possibly be the case all the time. When I first knew I had a tumour, before I had any idea of what we were dealing with, my biggest fears were that it might be something to do with the pancreas like my father and so within a day my biggest fears were allayed, as we found out that it was not connected to any of the vital organs and a week later that it was treatable. When Rowena had been diagnosed we were never given such reassurances so Mark and I were quite upbeat, considering.

The children reacted to this news in very different ways, no one could possibly be happy, but I would say they reacted as we would expect. Isabelle kind and emotional, Tessa organised, rational and compartmentalised, Rowena empathetic, pragmatic and has seen it before. Isabelle is my most emotional and it hits her visibly hardest, but I think they all felt the same – she just shows it more. Tessa coped well with the news initially and was able to be with Isabelle, however both the two oldest have benefitted from time off work to go home and cry when needed or back to Inholmes to see me. Rowena was really ok initially but a few drinks at a party and sympathy with friends meant she could let go, as she could see me and Mark and it is easier for her. Once Isabelle and Tessa came home for the weekend and could see my reaction they both felt easier. I have been so grateful that both the older two have boyfriends who look after them have been giving my girls the shoulder they badly need to cry on. Philip (Isabelle’s boyfriend) whose parents have also been through much the same. All three girls, like me, have such great networks of friends and it is in times like these we really appreciate their support.

Mark, it is harder for me to say, as it is not only the emotional reality of the fact that I am ill, but will get better, but the toughness of the day to day reality of me not being there doing my job. It is busy, and I keep on hearing stories although we have meals, they are running out of loo rolls, and it is not just a question of having meals laid on so beautifully by Carol and Rosie and my mother-in-law but a few veg which need to be bought for and thought about and prepared. I don’t think either Mark or Rowena have ever used Tesco online and don’t think of things in advance. Thank goodness that Tessa and Isabelle have been able to be at home at weekends to cook and generally help out with the dog walks and be company. It all needs thought before hand which is stressful for us all, but this goes on top of a new role at work and they are needing him and he also wants to be with me in my hour of need and wants to see me each day. Poor Mark has no spare moments. All of this has been helped with a couple of good wins by Brighton & Hove Albion to lift the spirits and give much needed time off. So although he is alright in someways, I am sure his blood pressure has rocketed with the stress! I can’t say it has been easy for us both, the uncertainty, and having diagnosis and definitive plans will make things better. But this last week has shown all can change so quickly.

As for me, I am having a good little cry to myself from time to time, sometimes with the reality of the future if I have this feeding system in place, sometimes with the worry of what is happening to my nearest and dearest. Also a good little cry with Mark or who ever happens to be here at the time. Tears have also been with frustration and with joy.

When we were facing our darkest hours with Rowena I used to find myself despairing and crying and then felt in this bad time it would be a shame to spend every hour sad and not look back on happy times. So since then I have tried to live my life seeing the best in life, looking positively forward and trying to enjoy the situation even if it is bleak. The night before I went into hospital it was Tessa’s birthday and we all went out for dinner, it was one of the happiest evenings with laughter, good food, drinks and family. There will be many more.

I have little to report on today and so will just blog a paragraph. A good night last night, and woke ready for the day, and felt a bit overwhelmed with the news I might live with being fed intravenously for life. So Mark came over with special permission and we spent a bit of quality time together so we could discuss this and talk. I had a bit of walk, the the day of ward is that after lunch 2-3 everything goes quiet, lights out and

drawn for a nap. I saw both Rowena and Tessa which was lovely. Fran Sneddon popped down and it is always good to catch up with a doctor friend in these circumstances, you can ask those questions that you feel you cant ask the Consultant. Lucia and Andrew came, and gave me a really unique gift of the Spectator and Statesman and I look forward to comparing and contrasting a story this week. If my opium fuddled brain allows. Finally a jubilant Mark and his father came to see me following Brighton win at football and I was fully cooked by then.

A number of people have praised my writing which has amazed this dyslexic, it is not something I am generally known for and Mark has a theory – I am on opium so this is inspiring me, like the Lakeland poets!

Many thanks for the gifts, and for taking the trouble to visit. It is the company I want and appreciate.

After my day of seeming confinement yesterday, today began well and I had had 6-7 hours of, albeit broken sleep overnight and this makes all the difference. The nurse I had was called Becky, she had run the whole team of night nurses for 9 months for the hospital and is a level 6, I am getting better at understanding the hierarchy of the nurses and she is highly qualified, I really do take my hats off to all my nurses they have been amazing. Obviously my bossiness is going to get up the back of some!

Anyway back to sleep, I awoke refreshed ready for the and I bounced out of bed to be the first to the bathroom and had a wash and one kind nurse washed my hair so that makes an immediate difference to the day. I then walked round the block here at doctors rounds, having been told to exercise I might as well be seen. That is another thing I did not realise that a consultant does every ward round with a trail of junior doctors, it is different in the children’s wards I had been in, apart from some meetings it is usually 2 or 3, here there are 7 or 8.

I have had three medical visits today. The first from The Pain Team, I kid you not, I am finally on a cocktail of drugs which leaves me pain free without having to ask for it in pain. They have taken away straight morphine and added gabberpentine and oxycodone. It is no problem for me to leave the dreams of morphia which for me have been really odd.

Second visit from nutritionists who explained exactly what I have been given and how it works. This technology, she said, was introduced 5 years ago. As I am not eating and therefore not absorbing, it is a worry leaving me without food. Currently the most important thing is to give me the nutrition I need to heal. This goes into my blood stream leaving my digestive system time to rest and get well and close up the fistula. The third visit was the doctors who confirmed this. I will be in hospital for at least two weeks for this to happen and then they will test to see if it is all working. This will be measured from the output of my fistula ideally zero as it heals. And this might take up to 2 months, but could be quicker. There seems to be a 70% success rate and this cheers me. I could be trained to use the machines, the intravenous lines and the food at home. I could even eat, it would not reach the intestines which need nutrition. Here’s to being in the 70%.

I have loved having visitors, it is the high light of the day, not todays highlight, however, Rowena got offered a place at Edinburgh University to read Fine Art. I am so happy and proud of her. So she will be off to Scotland what ever happens next week in Glasgow.

One of my visitors was Anne Davidson and she is the Consultant that we saw with Rowena in the Alex Children’s Hospital. Anne thinks it would be a splendid idea for me to have coffee with her and is going to devise a drip stand escape route to the outside and to have coffee or in my case water – I can’t wait, a challenge I will get into training for by doing laps of the ward.

If you want to visit and please do, I am keeping a list, it would be a shame if you park your car in Brighton as many of us know who had kids in Brighton College this area is shocking and find that I already have two visitors. Although one of, the ladies regularly has 7 men round her! She is a Matriarch!

Just to reiterate I am at the Royal Sussex County Hospital known locally as the County. In the millennium building level 9, A West, bay 7 bed 4.

2018 will be a year that I remember for the wrong reasons it is week 9 and I have spent nearly 3 in bed at home with flu and now two weeks and counting in hospital.

Another day in hospital, I know, I know quite a boring start. I am settled in Level 9, and for my visitors I understand that it is a warren and a bit of a nightmare to find me.

Last night, I became more acquainted with old ladies bowels than I ever thought I would, and had lots of interruptions and it was all a bit of a nightmare leading to 3/4 hours sleep. Bright lights and injections in the gluteus maximus tend to wake a girl up.

At 2.30am I was hooked up to a specially devised cocktail of nutrients to feed me via my blood stream. So you could say I am being fed! This is the only ward apart from ICU that does it and where I need to be.

Today I was playing the small sleep deprived child in pain and I am sure a nightmare to deal with. I find it hard to accept the fact that I have to be in pain in order to request pain medication. So rather than have, for example at home, when you are ill paracetamol interspersed with ibuprofen and being not in pain, here you get the paracetamol and then have to request morphine, in pain, and if you don’t request you wake up in pain.

My other problem is that over the past few days I have been increasing my exercise, (we are talking 10 minute walks) each day. But today I could go from bed to chair (which gave me back ache) and no walk unless I had a staff member with me. They could not spare any time to change my sheets or a wash at all, nor take me for a walk. The important things were done like I have had all dressings changed and drugs given and all expertly. By one o’clock I was crying with frustration at being in bed, and so I was planning an escape and then found I was thwarted by not being able to stretch to unplug. When I was freed I did a lap of the area and looked out to a glorious sparkling view of the sea and blue skies, I was told it was a really cold day. It was glorious and it immediately made me feel better, I am so used to being active I take it for granted. I will be doing the great escape regularly as I felt a new woman when I came back ready to face the day with a happy attitude.

I have had a few visitors, Vicky, Rosie, Alison, Rowena and Helen. Thank you for my gifts and company. Last but not least my ever loving husband.

The address for anybody coming is Royal Sussex County Hospital, Millenium building, Level 9a West, Bay 7 bed 4. Please text and let me know when.

Bed 4, Bay 7, Level 9A West, Millennium Tower at the Sussex County hospital is going to be my situation for the next two weeks.

This means a few things, they have found me a bed on the right ward, and they have decided what is happening to me now.

First things first, I was on acute admissions ward, which is what it says on the tin, they tend to take patients before there is a bed available on the right ward and then off load them. So there is a high turnover of patients, many different conditions and needs. I was in a mixed ward with two respiratory men, a disabled renal man and a 90 year old who had lost her short term memory who had fallen over and could not walk on a damaged hip. To go to sleep with all these different conditions lead to 1-2 hours sleep. The main problem was this lovely old woman who did not even have the memory to know she had a sore hip and every time she work, or was woken she started being frightened again, “Where am I?” “We need to call the police I have been kidnapped”, “Why am I here?” “In hospital?” when it was explained, “Do my family know where I am?” “What have I done?” This also happened at the top of her voice and there was no filter. I felt so sorry for her, but it would have been ok for me but it woke me so many times.

This morning my veins in my arms totally gave out, so from 7.30am I was unable to have liquid drip, antibiotics, paracetamol, a couple of other specific meds for thinning blood and calming the stomach. I could still sip liquid and have intramuscular morphine. So as I was coming up to be put onto IV food they needed to find the pict team. This took some doing. I had a good nurse called Emma who promised to get me onto the ward and with a pict line by the end of her shift at 3. A pict line is a line into a central vein and this is highly specialised.

I had a walk first thing and saw blue sky and sunshine and sea air just from the car park returning back to my bed. I had a sleep and then the pict team turned up and I have a central line which does not have to be done again and they can take bloods from it as well. A specialist nutritionist came and asked questions in order to get my mixture right.

Then I heard I had a bed on the ward. I have to have an x-ray to confirm that the pict line is in place, and they had to confirm that the bed was ready.

After much waiting I went up to the ward at 3, the doctors confirmed at 7 and I finally 12 hours later I was put back on the drips and food and antibiotics. Rowena visited twice and Gilly Lower turned up. I was lovely to see them, whilst they were there Mark sent me a text saying “overturned car”. I was so worried, and we tried to call him and could not get hold of him nearly beside ourselves with worry. I had not realised this was related to the traffic text we had received earlier! Had they taken my observations at that time It would have been through the roof.

The bed is very comfortable, I have a view of a back of the building, but I can see sky from my bed and this is my home for the next two weeks with 4 other women, all seem quite and not too much beeping.

I have seen Mr. Lamah twice today and he has confirmed that they are still unsure where the hole is, the have a few guesses and feel that they would not like to operate. 10 different specialist have had a look, no resolution so we are waiting. I will be on a drip for fluids, food, antibiotics for 2 weeks to give my insides a break and let them heel. If I am not leaking any more then obviously this is a good sign, and it might be shorter. However I know I will be recovering from this for a good long time.

Still no results.