I am still in Brighton Hospital, still on level 9 and still waiting for a bed in Guildford. Everyday we call and they say no or maybe for the NHS Bed and today or tomorrow for a private bed which is extremely frustrating. Brighton surgeons don’t really want to operate and Guildford do and it is now a week. However in that week I am brighter and stronger. I am still getting bouts of appalling pain, but by and large the pain killers work. My jaundice is still there. However as this gallstone is so big and causing such an obstruction I have to be on very powerful iv antibiotics until the gallbladder is taken out, otherwise I may get the same infection that had me crashing and burning like last week.

As I look around my ward it is easy to see why beds are so short two of the ladies have been on this ward unwell for 3 weeks or more, they cant find what is wrong, and they are not well enough to go home to eat and drink. Also when they are older they do not move and the muscle wastage is apparent even to me in a week and their condition deteriorates. The other three of us, well you know what I am up to blocking a bed, and the lady opposite is here until better and the other is an on the cusp senile dementia patient which a short term memory loss and although disabled with an adaptive home she has gone down hill. It is hard for her to accept that she does not make the decision as to whether or not she goes home. She is going into respite care and has taken it that they are housing her in a gym! We are all in a surgical ward and I am amazed how little we see of the doctors, any doctor. There is the one important ward round and they make the decisions on you in the 5 minutes by the bedside. If the results are not chased and they have not got them for the next day for example you miss another day. The doctors and nurses are wonderful and all work hard, when you are sick the care is amazingly good.

I am back on level 9 in the Millennium Building at the County Hospital and there are some familiar faces which makes life better. Dieticians, stoma nurses, healthcare workers, nurses and the ward rhythms remain the same. I was asked one morning, as I was feeling down, if I would consider moving bed to another ward. As it was a question rather than a statement I said no and have decided to stay on this ward until they get me to Guildford. It might not work!

11/6/19

I thought I would start my blog again as I have been very unwell again and it is such a good forum for updating everyone on what is going on.

Obviously, some of you are aware that I am back in hospital. So an overview today and detail going forward.

Since September I have been having some abdominal pain and before Christmas I had a really bad bout which saw Mark and I in casualty in the Princess Royal. I have had a gallstone for years and many doctors have looked at it an said it was there but not to worry. On this occasion the A&E doctor reckoned that this was causing my pain. I went back to my consultant GI surgeon who said as the pain was coming in a different area to the week before he felt it was far more likely to be adhesions which also makes sense to me as this has been a recurring issue. I have also been seen by a GI specialist in St Mark’s Harrow who agreed with Mr. Lamah, so I felt I had made the right decision. However about a month ago I had another awful pain and my blood tests were raised and went to my GP who said I should have an ultra sound and they said I had a huge gallstone and it should be looked at. I went back to Mr. Lamah and he wanted me to have it MRI’d and as I was due to have an MRI at The Royal Marsden and they we happy to report to Mr. Lamah it seemed a good idea to wait for that.

Monday 25th June in the middle of the night I was woken by the worst type of pain I have ever known, and sadly Mark was not there. I was very close to dialling 999 but took some paracetamol and eventually the worst of the pain went. I saw a doctor the next morning and got some higher pain killers and went to do New Designers Show in London. I was in discomfort but not agony there and came home on Thursday. Thursday night I had another terrible night and off Mark and I went to the Princess Royal and was driven by Mark to EACU in Brighton and seen by the GI team. I had a scan and it revealed a 4.3 cm gallstone (I later found out it is so big it has a name of Merizzi Syndrome), this was causing trouble in my bile duct and so that is what the problem was. I needed to have a MRCP to see if there were any stones in the bile duct. The next appointment was 8.40 on the Wednesday. I was sent home late on Friday. On Sunday Morning 30th I got up normally made tea and was just going to the loo when I blacked out, I had just started the awful pain again and Mark called the paramedics. My blood pressure had crashed to 50:30 and although I did not have a temperature everything else was off. I was hallucinating and barely coherent, so this time blue lighted into A&E with Mark following and Tessa and Isabelle came down as well. I was pretty out of it, and if it hadn’t been for Tessa telling me a few days later I could not have recalled this next bit.

My blood pressure did go up a bit, but still very low, and my blood results were rising. I had had a black stool on the Saturday which becomes more relevant as the story continues. I eventually was found a bed in the HDU and had amazing care there. Blood transfusions, platelets, massive antibiotics, to find I was resistant so one of them thanks to a bacterial infestation I was told. The doctors here felt I should be seen under an Upper GI tract team and that Mr. Lamah who was on holiday is a lower GI tract specialist and he was suggested to hand over my care. So a plan was hatched, I have as you can all appreciate a complicated abdomen and it makes surgery, which for most gallbladders a straightforward keyhole procedure, difficult. Added to this the gallstone is pressing up against my bile duct and there is a risk of this tearing when it is removed so not straight forward. Secondly I have anaphylactic shock to a group of anaesthetic drugs. The local centre of excellence for this is Guildford, and the lead surgeon is Professor Tim Worthington, so I have been referred there to him and he has accepted.

My next complication and one of the reasons for me being poorly was that I was bleeding internally. The gallstone was pressing on the Hepatic artery and causing an aneurysm. This accounts for the black stools and part of my misery. So on the 8th I had an interventional radiologist procedure to put in 4 coils to stop the bleeding. Some of the pain has subsided.

I was in HDU from late Sunday night 30th to Thursday and have been on the gastric ward on level 9 at The County hospital every since. I left HDU stable, the infection under control of iv antibiotics and still having bouts of pain. I now have the bleeding under control as well, so apart from the fact I have a very damaging gallstone which is blocking my bile duct and turns me yellow I am stable, so they are happy to move me and I might now be well enough to be moved to a private bed at The Nuffield Guildford. I cant be discharged as I am still on iv antibiotics and if I wasn’t I would end up back here again as the problem has not been sorted.

I am in a ward of five women (none with dementia I am glad to say), and have a window overlooking a building but I get fresh air and sky! HDU is in a basement!

I have also had a pict line put in after 14 cannulas and probably more failed attempts and bruised arms.

An Update 21st February 2019

I have not really had much to report health wise but since the new year two things have happened and I thought that I would share this with those who are interested.

Firstly I started the new year with a MRI scan and went up to London to see the consultant, the lovely Dr. Robin Jones and he greats you with the results of the scan and it was clear. I said I was happy as I knew it was 50/50 but he shocked Mark and I by saying it was much higher and I was really fortunate. What a relief.

My insides are pretty mixed up and I have found out over the last six months I do not absorb all the nutrients, particularly zinc, iron and fats. So I have been taking an enzyme to help and extra vitamins and minerals and even with this I was the 4th lowest from the Bio lab last Christmas that year on zinc levels. So I have upped this supplement.

So I started to research who was the best person to see nationally and settled on St. Mark’s hospital in Harrow and Dr. Simon Gabe agreed to see me. This was back in September and I finally saw him last week. I am definitely in the right place and he is happy to take me on and try and solve some the the problems. I had lots of blood taken for tests, and then put on a list for more tests and back to see him in 4 months to determine what I will do from now on. They said a few interesting things, firstly I could not understand why my pancreas was not producing the enzyme and he said it could be that I am not producing hormones that tell the pancreas to produce the enzymes. Best guess on his part, but makes sense. Also they are concerned I might continue to get adhesions and problems, and they are happy to help me with all of this if that occurs. A bit of advice on what supplements but basically agreed with what I am doing. I am not sure if it is a good thing, but I am unlikely to ever gain weight again. So I can basically eat everything an not gain weight – if I knew this 5 years ago I would have never believed it. So being a size 6/8 and a healthy BMI is pretty good really.

Having said all this, I am really lucky and thinking what it all might have been like. This time last year I was in A&E with a fistula and in a bad way waiting to go on to TPN and facing the possibility of being intravenously fed for life. So having just spent a lovely few days with Rowena in Edinburgh eating out and living life pretty normally I count my blessings.

Following the MRI I had in July, Mark and I went up to The Marsden in London to see the consultant and the geneticist yesterday. We were greeted by Dr. Jones with the wonderful news that there is no sign of the tumour and that I do not have to have another scan for 5 months. There is not guarantee that it wont come back and I will be scanned for many years to come, but currently I am ok.

The geneticist was equally positive and there is no abnormality that could have caused both Rowena and I to get our rare sarcomas, so all in all a good day.

We have had a great summer – hasn’t it been wonderful to have so much sunshine, I miss it now. We went with the family and boyfriends and my mother to Provence and had a lovely week with them and then a quieter week just Rowena, Mark and myself. Tessa has relocated to Rotterdam and I have spent the last few days in the Netherlands with her which I loved.

Eating is still a challenge, I am still being sick if I eat something I can’t digest (steak or rubbery meat), or I eat too much and I have a constant upset stomach. This is a problem and could be because I do not absorb fat, we will wait and see what the nutritionist says after another appointment this week.

I have had an allergy test and I am allergic to Rocuronium and other related muscle relaxant drugs, so at least I know now what to avoid in general anaesthetics in future, this is what caused the anaphylactic shock which I was operated on in February.

I have had the procedure nearly two weeks ago to stretch the opening that had been closed due to scaring for the second time, and I am now cautiously optimistic it has worked this time, at least it is working currently. I am beginning to be able to eat again. I have to say that I am terrified of it and so I have been trying to eat new things slowly. However, over the last few days each meal has had TEXTURE!! Last night for example I had half a fillet of sea bass and mashed potato and a few well cooked broccoli spears and so it is a vast improvement from sieved soup. There is hope that by the time I go to France on the 7th July that I will be able to eat out in a restaurant!

It is easy to underestimate how much a procedure can effect you, I have been very tired and sore, but picking up now.

This week I have been setting up in a pop up shop in Brighton which is a co-operation between seven jewellers. I am really enjoying being involved and getting to know new jewellery friends. So far on a quiet Tuesday afternoon we have only sold one necklace in total, and sadly it was not mine!!

The next stage if the scar tissue begins to form again is to have a major operation and I have decided to get a second opinion before I go ahead. I am a complicated patient as it will involve rerouting the intestine into a different portion of my stomach, which is the part that had been closed off for the bariatric gastric bypass and reversing this operation and so needs quite a lot of expertise from different kinds of “gut” surgeons. So not something I wish to take lightly. So lets hope it has worked and that this does not need to happen.

I have had another day waiting in hospital and a procedure to put my inability to eat right. It is called a pyloric dilatation. Basically the scar tissue around the join of the intestine at the top just below the stomach has developed so much scaring it keeps closing up. This time it was not quite as bad as before as I could still tolerate water and fluids, but it was still bad. Last time I had this the radiographer stretched the opening with a balloon to 12mm and this time he used a bigger balloon and stretched it to 18mm. The next time, if there is a next time, he will put a stent in made of the same material as dissolvable stitches which will help to keep the opening open. At least we have a plan.

It was strange as I went in feeling tired, and very low blood pressure 70:54 and thought to myself that I would go to sleep. After the sedative I do not remember anything about the procedure and woke up in recovery. The radiographer came to see me later and told me that I talked throughout the whole procedure with a mouth guard in!! I have no recollection. Mark and I went in for 10am and waited, I had the procedure at 12.30 and then I waited in recovery until 5pm before being given a bed. Back on Level 9 which is familiar and back in the bed next door to where I was before. The best news was that Becki who was my favourite nurse was on duty last night and she was as pleased to see me and see my progress as I was to see her.

The proof of the pudding is in the eating and literally for me we will find out over the next few weeks whether it has worked or not. So back on fluids for the next few days and then hopefully I can introduce soft foods like fish etc over the following weeks. We are off to France in July, and then I am hoping to go to Canada in September, but eating is pretty vital to both!

In hospital on a fluid diet following surgery – I am offered a choice of soup, (chicken, tomato or vegetable), yogurt (very sweetened varieties), jelly and ice cream and that is it. I have persuaded them to give me some Ready Brek with lots of milk and that seems ok at the moment.

Home later today, but it seems that I bypassed admission and so they have to admit me, and then they can discharge me. I hope to see the nutrition team before I go home.

One great thing is that my scar has healed up over the last week, so having been wearing a dressing for three months it is liberating not to have any bandage. I can now swim and have a bath.

Last weekend Mark and I were in Verona and had a wonderful time seeing Sam Smith, and just being together. However eating proved to be a bit of a disaster. On the Saturday lunch after a bit of retail therapy, I had a bean soup and then gnocchi. However something disagreed with me, and I spent the afternoon being sick – it is a relief when whatever is too big for my system eventually reappears and then I can get on with it, sadly this was all repeated after breakfast on the Sunday and I spent the morning in our room.

This week has been a bit the same (more being sick) with me accepting that although I could have some soft textured food the week before last I now can’t, so I am back to a liquidised diet and drinking fluids. I have been to see a doctor who specialises in nutrition and an osteopath who specialises in scar tissue and my back feels better and I have a few more ideas of what to eat which makes a pleasant change. So on Friday I texted Mr Lamah and I will be having the same procedure to stretch the opening sometime over the next few weeks. The hope is that it works, as there is a possibility that as I am prone to scar tissue and adhesions that it might not.

The good news is that I have got back into walking the dogs, and yoga and we have been to a lovely party in London, and off to Glyndebourne last night. So life is resembling some normality. My energy is ok, definitely getting better.

I have been struggling over the last two weeks. I had been told to go on a soft/liquidised diet. In reality I am back to square one and have had to start again and this has been extremely tough. I tried to eat a few things that were a bit more textured and failed by being extremely sick, so cottage pie and fish pie have been out. So porridge liquidised, soup, the fortispip drinks and Scandishakes are my daily fare. I have managed humus, and crisps and melting crackers with soft cheese which I cant explain.

Yesterday Mark and I went to see Mr. Lamah, the surgeon, to follow up. He has a plan of action, I will be reviewed in two months and then if I am still unable to managed a better or acceptable diet I will have the same procedure done again, as two weeks ago. This will stretch the opening and hopefully sort the problem out. If after another three months this does not solve the problem we will try again. However if after six months I am still in this position then I will face surgery to cut out the scar tissue and rejoin the opening.

As for diet I have been told to try things, if they work carry on eating them if not leave it for a bit. It is all very vague and in the mean time I am still losing weight. I have taken things into my own hands and I am seeing an osteopath for my back which is still hurting following the anaesthetist injecting the epidural into my crumbling disc. I am also going to see a nutrition expert doctor in Lewes next week to try to get to a plan. I have been recommended probiotics by various friends, but the consultant does not reckon these work and unhelpfully goes on to say that my gut flora/or lack of is why I have such an upset tummy all the time.

Carrying on my tale of woes, I am still very tired and as today is three months on I feel a bit better but a very long way from normal. I would like to take up exercise again to get my arms looking toned, or really my whole body. But a 20 minute walk seems to knacker me and I need a sleep after.

So having written about positivity I find myself in a spiral of negativity. However Mark and I are off to Verona tomorrow and back on Sunday. This might do the trick. I am guiltily leaving Rowena to her three days of Art A level practical.

I have been listening to a great podcast You, Me and the Big C. This has resonated with me as they are going through a lot of similar stuff. However they are worse off as they are younger and have all had chemo. But if anyone has cancer then this podcast is full of information about money, drugs, infertility and the highs and lows of treatment, and so much more. I am off to the Marsden in London today to see a genetics specialist as both Rowena and I have rare sarcomas.

It is my mother’s 85th birthday today and I am very relieved that I will not be spending it in hospital!

Yesterday I had the CT scan and although I am no further forward with the pain I am experiencing, they have ruled out anything serious like a hole in my join where they did the procedure. They did find out that the liquid dye goes out of my stomach into my duodenum and then back into my stomach and then down to the intestine. The surgeon was not worried about this, but I do not really understand the significance of this. So I am back on being able to eat – I was starving after only water for 31 hours! Even soup, ice lollies and Fortisip juice was good under those circumstances!

I am able to eat soft food for the next few weeks and instructed to be careful. The best news is that Mark and I should be able to go to Verona for the weekend of the 11th/12th and 13th May to see Sam Smith.

Today we are going to Hove to taste Audrey’s chocolates and buy a few for my mother – she loves the Fortnum and Mason violet creams and they make them for F&M. So we thought she might like to see what other flavours she likes. This evening we are going to The Duke of York Cinema in Brighton to see “The Guernsey Literary and Potato Peel Pie Society”. It is definitely better than being on TPN at The County!!

This did test my optimism, but back to my positive self, although still with an unaccountable abdominal pain! If the pain does not get better I might go and get a second opinion on all my treatment elsewhere.

Hopefully I will not be blogging for a few days as I have nothing to say medically, and I will be eating and drinking normally and happily getting back to full energy and fitness. My next appointments are with Mr Lamah on 10/5/18 and a genetics consultant at the Marsden as they were interested in me as Rowena also has a rare sarcoma on 11/5/18.

Yesterday I developed a pain in my abdomen which the doctors are worried about. I do not have any signs of an infection and my pain is not even serious enough to warrant me taking pain killers, but nevertheless it is not going away. I am back on drinking water only and I am waiting to find out whether or not need to go to have another x-ray, the worry is that I have a hole in the area they stretched.

So yet again two steps forward and one step back. I had started my day on puréed porridge and apple and then had one of the milkshakes fortified with protein. This must have tested my intestines. But it all could have been me doing too much on the day before or sucking a chocolate – we can all blame ourselves, and in the end I do not know, and nor do the doctors.

Today I may find myself going down to hospital again to be tested by contrast dye and an x-ray and I guess being admitted if they find a leak as I would have to rest my digestive system and be fed alternatively. As far as I am concerned this would be the worst case scenario. I think I would be facing another operation. Mark and I find that we are discussing whether or not we should stick with the same consultant, or get second opinions, it is tricky to know what to do. We have booked a weekend away in Verona for the 11/12th May and I was so looking forward to something nice, which looks a bit unlikely today. Positive thoughts are a bit hard to come by.