Day 10

I am still in hospital and still in Acute Admissions Unit (AAU) and I am waiting to for a bed in GI Ward. This morning I was quite low and this got better as the day progresses and now I am feeling that I should have gone home. There is the little problem with the fact I am nil by mouth, I have a drip and IV antibiotics, and a catheter. The other small matter is a fistula.

Going outside to the contrast dye CT and X-ray I think this was the difference, being in bed all the time is very debilitating and drains the brain and confidence. Now I plan to bring my attachments and do as many loops of the ward as I am able, if I can get to go outside I will or at least near the doors.

There are no further judgements from the doctors. The consultant surgeon and radiologist can see a hole in my stomach and this is what is causing the leak from my bowels and it is coming out through my surgical scar. There was no surgery in this leaking area and they have no idea what caused it. Obviously it needs to be fixed and they are reluctant to open me up again. So they are asking other surgeons to see if they can help. We will wait and see. Still no results from the biopsy.

My visiting hours are 3-8 and my mother and brother are coming on Sunday and the girls are coming from London this weekend. Lucia and Andrew Dunlop want to drop in on the week end too. Let me know times please.

I can only have 2 at once.

When I came into hospital I was 10st 13lb and I was weighed today 11st 1lb! How does this work? I have a 500gm tumour taken out, and do not eat for 10 days and I gain 2lb. No exercise and fluid!

We eventually got to A&E, there were no trolleys, so Lynette, the Matron and ambulance crew waited until I could be put on a bed and handed over for I guess another hour. Eventually Lynette rang Mr Lamah who was waiting and he came down with his junior doctor (not confidence inspiring as this was the first day of her rotation). They found us a side room. Dr. Lamah then opened me up in front of my eyes to try to see where all the evil stuff was coming from! He was not sure, so at this point he wanted a CT scan. In the mean time a nurse had made me drink some contrast dye which then leaks out of me. They stop. Off to CT scan back to A&E and two hours later after splitting wounds and leaking bandages and scaring a medical student with the severity! Mr Lamah comes back at 6. They have found a small tear in the stomach wall. So no op after all and to be admitted to the GI ward for 2 weeks to give my insides a break. I was told it could be 2 hours, or 4 hours or the next day. Needless to say I am still on A&E and will fingers crossed be transferred tomorrow to the ward.

I would love to see friends for short visits, please text, WhatsApp or message when you want to come. I am sure Mark and Rowena would love the odd home cooked meal and the dogs need a walk if any one wants. Goodnight from the County.

This morning I woke up feeling so positive after the best night in a week.  But if you read the blog yesterday you may have picked up that I was leaking.

This turns out to be very serious, as one of the bits of plumbing has developed a leak into my abdomen.  I am baffling them because I have no indication of any infection – normal observations.  But I have been in increasing pain and I have felt things we not right over the weekend.

So I waited for an ambulance (took 4 hours!!) to take me to the County Hospital in Brighton where my surgeon is on duty and he will admit me there to have a look at what has gone wrong and then patch me up.  I then have a long stay in hospital because the risks of infection are high.  I will probably be in the County for perhaps a week, and then back to the Montefiore.  All of this is not guaranteed and I will keep you posted.  Nutrition and antibiotics will have to go IV and then we wait and see.

I now have two new tubes in and counting.

I just thought I would report the best thing in over a week 7 hours sleep. I was woken ever 2 for painkillers but went straight back! A new Fiona

My diet has been restricted for three years due to a gastric bypass in September 2014. I have a small capacity and it is hard to tolerate sugar, but I have managed a bit and got back to eating small meals and pretty well everything as long it isn’t huge. It works well for us and Rowena has small appetite as well so we do meals for 2 and Rowena and I share one half with Mark. I do not absorb as much and eating and drinking separately. As all of us, I try to eat lots of protein, and veg and not too much high fat.

Now I have been given the list below

Yes

Mashed potato with cream and butter

Poached fish and chicken

Double cream

Full fat milk

Cheese

Drink milk

Smoothy

Purée anything

Clear soup

No skin on potato

Salmon

Nothing bigger than a pea

All dairy

Eggs

Ice cream

Jelly

Lots of sugar, fattening foods to gain weight.

No

Beef

Or fibre

Lamb

Or really any meat other than softly cooked chicken

Onions (minimal for flavour)

Garlic

So no brown rice, bread, grains,

Veg – green

It is so very hard as a lot of this goes against everything I have been doing. This is for 6 weeks. But generally I have to eat more calories as I will not absorb as much and drink lots.

My problem at the moment is that I have no appetite and I am able to eat very little. I am being asked by the hospital to suggest what I want, this is very reasonable, but I have no idea what I fancy. They are happy to do everything for me, which has been better today. I really feel like good soup (Vicky to the rescue) but the soup here is so salty it is unreasonable to eat.

Can anyone come up with ideas for me given the restrictions so that I can suggest things?

Today has been a small step backwards, another poor night up and awake from 3-6 and then just a bit lower all round today. I have had a weeping wound, but not infected. Pain control is under control today and so fingers crossed for tonight. I will be going to have a scan tomorrow to see what is causing the ooze and I will be home either Tuesday or Wednesday, it is suffice to say that they want to be totally happy with me and that I can cope at home, and today I would not.

As I type this I am watching Call the Midwife and feel ok, fully dosed up and warm and comfortable and having great care from wonderful nurses, a few revitalising visits from friends, lovely messages, visits from family. I feel blessed.

Thank you to those, Carol and Rosie particularly who have been supporting my family at home with food and comfort.

I had a much better night and woke up to being told my catheter was coming out. Mark came early as Brighton were playing later. He is happy as they won, in case you are interested. Then shortly after I had a rather weepy time being a bit bullied, but it would not be fair to dwell on this as it is not right to talk about staff members here. The vast majority of staff I have got on well with and they have tolerated my “OCD” on admin, but some don’t. The matron came and sorted me out, shoulder to cry on, kind words and sympathy and gave me the best news everything else was being taken out of me by her. So having got rid of the Nasal Gastric tube I am glad to say I can talk a bit better. In reality just a few dressings left, and pain, and lack of energy. I am struggling to eat, but drinking milk is working. Tomorrow I will post the lists I have been given on dos and donts of what I can eat. I have also had a shower and climbed a few stairs. Saw my consultant, each time I have a few more questions – well you would not expect anything less!

Lovely middle of the day seeing daughter 1 and 2 and watching England get their gold and bronze. Rowena came in early evening, but I was less good company.

However from 4pm I have had trapped wind – OMG it is so painful and hopefully will pass (pardon the pun) soon. It is now 8.30! So hence I am a bit later in my composition. I should be going home Monday/Tuesday and might get results next week – fingers crossed. Game of two halves I think.

Love to all. Keep messaging.

Day 6

I was given false hope I might have all my drips and drains out, but sadly no, I was able to have the drain taken out and so one less on my journey.

Last night was not a good one again, I know it is an age thing and I do not sleep very well anyway but I slept from 11-2 and then not much more perhaps an hour and it is wearing on me. I have dozed twice today, but it gets busy in hospital with checks, physios, nurses, baths, so much disturbance and now is really the first time I have had a kip and it is 4-5 so I hope that it sees me through Mark’s visit later.

Permission has been given to eat which is glorious but I worried as I have a gastric bypass and this has to be taken into consideration along with everything else, and it is not a speciality of this hospital. So I might have to do a bit more research myself of what my diet will be going home. If anyone knows an expert on this please let me know? They are saying high protein and high calorific food with potassium. But also icecream, jelly, sweetened protein shakes, none of which I could tolerate. Would have been the answer for a diet if I had only known. So last night I had jelly and ice cream which was too sugary for me.

This morning I asked for mashed banana and natural yogurt. I swear they bought me 500 gms of yogurt and 2 bananas, it was rather overwhelming I had ten small delicious mouthfuls. The yogurt was soothing though. It got better by lunch and I had a small consume, and a cup of tea and then a little ice cream as it is cold and my throat hurts with a nasal gastric tube down it. So it is hard to eat. This evening will be soup and an avocado which will be good for the potassium. Google is amazing how you can find out information immediately.

The nurse I have this afternoon and the physio do not let up and so I walked 80m which was a good thing to do. I can get out of bed unaided and walk ok, with a passing resemblance to a little old lady, these gowns are not good and I think more than once person has had a look at my bum!

Tomorrow I see my doctor and hopefully I will have the last of the drips removed. It is realistic that I will have to be able to master stairs and off morphine before I get home and get my diet sorted, so a few more days after tomorrow.

Tessa and Rowena came to see me today and it was lovely to catch with them and hear the news, that Rowena has been waiting for, that she has been given an interview for Glasgow School of Art. Sadly I wont be able to go, it will have to be her father who is her bag carrier (literally) how great to get such good news.

I am also looking at three wonderful bunches of flowers and they came from tulips from Tessa, a beautiful scented mixed bunch from Ginny and Mark and a dozen red roses from my dearly beloved. So blessed. My kitchen has looked amazing since I knew I had this thing, so thank you to all flower givers.

I have had a better day in many ways. Woke up fuggy and tired after 6 hrs very broken sleep – awake from 2-4.  However got up and about as soon as did I had to go down to x-ray to have dye put in to my ng tube.

They then took a live x-ray and the plumbing is working!!! Hooray. So all joins not leaking and working from Top to bottom. I have walked a bit, sat in wheel chairs and got moving.

The end result of the dye was a case of the runs – but I can’t run!! But that also makes me feel better. With constipation I would cry!

I have had the ecg monitor off, 4 hourly blood pressure and pulse and temperature now. I will wait for the rest of drains and drips to go. Currently the doctors and nurses and physios are really happy with me as I have walked, have a working system, all the joints are sound and it work with bowel movements. It does make me feel so much better.

My results are being delayed because of the main lady at the county who does their histology is away on half term, and it then takes 7-10 days – 3 weeks from last Saturday.

Good day

Had a better day today and achieved a few milestones. I have moved from the high dependency unit to my own room which has a view of the outside and luxurious for a hospital. Large with a great bathroom. The consultant is happy with me, and progress is as to be expected.

Tessa came to visit which was enjoyable, she hit a good time.

Mark is spending some of valentines evening with me, this makes a change as Brighton have been always drawn at home over the previous few years and I passed on a night at the Amex!

I have not been violently sick again, but having few problems with hallucinogenic dreams with being on morphine, they are trying to sort out a solution. I am still nil by mouth except sips of water until Saturday and so I have little energy.

Thank you for all good wishes by email, text, blog, facebook and cards, I feel very loved.

Well I have had an awful day and night with terrible sickness and pain. But 24 hours later all is feeling a bit better and I am a bit more positive now.

The epidural came down and so can move into my own room, rather than the 3 bed high dependency ward, which I understand is going to happen tomorrow. I have been put on morphine which is a truly great drug and I have been having weird dreams and have managed to have a rest today all of which help considerably to feeling better.

I have a scan to check out my plumbing on Friday and so will know if I can eat then and we can go onto another stage. I should be in here for 10 days.

I am so grateful for offers to visit, but I really do not think I am up to it, it was a huge operation and I am so very tired, in pain and being sick, perhaps next week before I go home then I might be able to, but don’t worry I am at home for six weeks without driving and so would love offers of company, lifts and dog walking friends to walk my naughty labs.