On Tuesday evening I did eventually come home, Tessa came and picked me up. I was cleared to go at about 3 and it took a further 2 and a half hours to get the nutritionist and the doctors to sign me out!! So I am sorry I did not blog yesterday to update everyone on how the procedure went.

I was down in the x-ray operating room at 9.30 am and it was a sedation type investigation when they put a camera down via your throat, then a wire is fed through and along the wire they can put a small balloon which stretches the closure, then a slightly bigger balloon. This has worked and I now have a 12mm opening which is approximately the normal size. My opening will be less stretchy than normal however, and I have to be very careful of what I eat. I was given a local at the back of my throat and then was conscious, but it remember very little. I do remember the end and being shown the x-ray images but then waking up in another room later. I thought it had been about 15 minutes to discover it had taken an hour and 20 minutes! On the ward I felt great and no problems, and I can drink and enjoy it. For quite a while I have been finding everything tastes metallic, and so it is lovely to find that has gone. In hospital I had consommé from home, and tea and water. All going down easily. I met the nutritional team and will be on a follow up from them. So it was clear fluids for the past few days and now it is liquidised food which is a great treat. I do need to the have fortified milkshakes etc. to give me nutrition, but all my blood tests have been totally normal so far.

Yesterday I had a hyper day, I expect it is the rush of having food and nutrition going into my system after a little while of nothing, and today will be quieter. I have a small amount of abdominal pain and a sore throat but otherwise feel great. Also I am looking forward to my mother coming to stay for a while.

Looking back over my blogs I realise that I touched briefly on a philosophy of mine for positive thinking and outlook on life and wanted to expand this. I have just listened to a lady called Beth Greenaway on Facebook who has been very ill with heart problems all her life and has such a positive outlook we can all benefit by, do go and find and listen to her. We are only given one life and no one else can live it for us. So every day what ever the challenges that face us we have to live life, enjoy it and get on with achieving those things we want to achieve. Of all people, I know that we can face challenges and life seems to be hard, but I cannot, and will not let life be miserable, I want to enjoy family, friends, pets, gardens, travel, and eating. Keeping smiling, enjoying life, work and exercise and all essential to who I am, I do not want to be negative. When Rowena had been very ill, I had found that when I was not in hospital being strong for her I would break down and spend a lot of the time being sad and crying (after her treatment I had proper and understandable depression). However her life was in the balance and she very easily could have died and I realised that I had been spending what might be her end of life being miserable. This was a shocking thing to realise and it changed me for ever – I could not bear the idea that we would not have happy times to cherish and enjoy in what might be her end of life. So from then on I tried to enjoy with her and the family any good times, visits to theatres and Harry Potter studios arranged by her uncle Andrew and Rays of Sunshine, walks through London, sunshine, gardens, flowers, shopping, anything really. A good day with her, or racing or with friends or family. As I said, life is for living and not a defeatist attitude that you are too ill to tackle things and a I can’t attitude, better to have tried and failed.

So one day at a time I am going to glory in the double rainbow I saw yesterday, the buzzing energy I had to get things done and the contrasting quieter day in my workshop and with my mother today.

I have had another night in AAU, a friend likened it to Beirut, but it has been ok. There are no windows and it was a mixed ward last time, but this time I was with only ladies. They are all fine, a few a bit old and confused, they lost one of the old ladies who had been wandering the corridor but she turned up!! A bit of a panic had ensued.

The main problem is with one of the daughters of a demented patient who talks very loudly and sternly to her 90 year old mother – I think she is a teacher and is good at lecturing her. She is bullying her and shouting loudly and this means they have a row! She is here all the time – I wish she keeps to visiting hours as when she was at home overnight her mum went to sleep and all was peaceful.

I am about to go and have my procedure and hopefully home tonight. Fingers crossed I can then eat and drink.

They are putting an endoscope down into my stomach under sedation and then using a balloon to stretch the scar tissue.

I have now got back on to the ward and it was not an easy thing to go through, but it has been a success currently. I will be slowly able to add foods to my repertoire and fingers crossed it will all stay open.

Home today is the plan, but I have to be seen by dietician and doctors first.

Yesterday, at home I was very sick and could not keep down anything, water and fluids included. This morning I only had water and was sick on that too. I am not really surprised as if the scar tissue has been closing the aperture then it makes sense eventually it will close it completely. So I have to come into hospital in order to be hydrated. The plan is to put me on to TPN to give me some nutrition as well. So I will be an in patient until such time as they give me my procedure to stretch the opening so that I can eat. I have been told this morning it will be a while before I can eat normally again which is a shame as we were hoping to go to Verona in two weeks and I thought that I might have just made it. We had tickets to see Sam Smith perform in the roman arena – I am a bit gutted to miss this.

So I sit in a waiting room in Surgical Admissions, at the Royal Sussex County waiting to find out which ward I will be on and be assessed. I do not know when the operation will be, but it is no more urgent now than it was before and they will not speed me through, so it will be Tuesday, Wednesday or Thursday …. hopefully not later. Definitely not eating is a great way to loose weight.

This has been a frustrating week as I have been expecting to find out about an operation every day. I have now been told that the consultant and the radiologist at the County who Mr. Lamah has consulted to do my procedure have both looked at the scans have agreed that it is all possible and so they are going to do it. They now have to find a time for all of them to be free with an operating theatre/x-ray machine at The County. This is expected to be on Tuesday, Wednesday or Thursday next week. I will be a day case, unless I am scheduled to be late in the day. So they will be putting an endoscope down and a small wire into the gap and then a balloon which then stretches the opening. A friend confirmed to me that scar tissue once stretched stays stretched.

I am only eating very soft food, basically clear fluids and mashed potato and gravy and a little soft cheese. I have been loving the glorious weather and feel much better in myself, just waiting.

I went up to the Royal Marsden in the Fulham Road on Monday to see Dr. Robin Jones. He is a really lovely doctor and really knowledgable about Desmoid tumours. There is a debate as to whether or not this is a cancer, but he is an oncologist and the treatment for these tumours is by surgery, chemotherapy and radio therapy. Technically the tumours are benign as they do not metastasise but it can come back aggressively in the same place.

Currently, after the scan last week, I am clear and so I am going to watch and wait. I have another scan scheduled for the end of July and will be regularly scanned thereafter for the foreseeable future. I do not have to have chemotherapy which is a great relief.

The journey up there with Mark in the car was a bit of a nightmare as I was very sick both journeys. I had had for breakfast one of the protein fortisip drinks so I get all the nutrients I need and this formed clots in my stomach with the stomach acid and blocked everything. I can now only tolerate clear fluids and it is pretty boring! I am also quite hungry and would like to have something a bit more satisfying.

There has been no news about what is happening to me, but I am going to be going into the The Royal Sussex County Hospital to have the operation. There is a gastro x-ray meeting today and they are going to discuss me, so I should find out something today as to when and what they are going to do.

It has been lovely weather and I have been sitting out in the garden a bit, and I am looking forward to a day in my workshop getting on with a few enquiries from shops and customers.

After seeing the consultant yesterday I have been allowed home. I am able to tolerate clear fluids and whilst that continues I can be at home. The plans are that I go to the Marsden on Monday and let them know what is going on with me and if they want to take on my care then so be it. However I would rather be in Sussex for this procedure. Plan A is I have an endoscope put down me and a small balloon used to widen the scar tissue at the blockage. Plan B is to use a stent but as this has to be removed at a later stage or they can move or be absorbed so is not ideal. If neither work or the widening works and then fails Plan C – I would have to wait a month before more major surgery and redoing the join. So I would have to go back on the ward for a month to TPN. This would be awful – but let’s hope plan A or B works first.

Anyhow I was struck by the thought that gin and vodka and tonic are clear fluids and Mr Lamah saw no reason not to! So hears to a G&T tonight!!

Having written about being sick after eating milk, I was then sick after a total dairy free meal that evening. So I went to see a GP and then my consultant on Wednesday and was scanned yesterday. I have various joins where they have removed intestine in order to remove the tumour and rejoin to my existing intestines. The join, just below the stomach, has closed up due to scar tissue. It looks like this was where the fistula was. The good news is that the contrast dye did not appear anywhere it should not have been, but it showed an obstruction. In an odd way I am pleased that I have an answer for the pain on eating and the sickness. So I am going down to the Montefiore in Hove to see the consultant and will probably be kept in in order to hydrate me. I will find out when I have a small procedure to open the opening either by just stretching it or putting in a stent I understand. But I will find out later.

It is just another thing to contend with, and I am sure I will be better for it. I did a bit of yoga this morning and continue to get better – more energy bizarrely as I am hardly eating anything.

We had a lovely family time in Devon. I cannot say I did much, the family went on lots of wet walks with the dogs and the weather was so bad that the golf course was closed apart from our last day – the Thursday but as we were leaving sadly Isabelle did not get the chance to use a new set of golf clubs. I did get to go into Chagford, always a pleasure and we had a good lunch at the newly refurbished Ring of Bells in North Bovey.

Coming home made me realise I have progressed, my energy levels are slowly getting better and I no longer need a mid day nap! However if I do a bit too much I pay for it the next day and have to take it easy – I do not think I will be back to regular exercise for a while. A ten minute out and ten minute back dog walk is the sum limit of my endurance and this is not really enough for my dogs so any offers are still welcome.

I have an appointment at The Royal Marsden on the Fulham Road on Monday 16th and look forward to finding out what is in store for me with this journey I am going on with a Desmoid Tumour. People talk about journey’s with cancer and it is a funny thing, I feel a journey is a beginning middle and end, but an illness is just being, and in reality just doing what you are told to do – no real choice.

Eating is my continuing problem, I still have issues with taking mouthfuls and each one is quite painful as it hits my stomach and I can only eat about 5 mouthfuls during a meal. Recently I have had a lot of pain due to wind and general diarrhoea and three days of the last seven being sick. I worry that it might be an intolerance to milk as I am sick after eating yogurt or macaroni cheese. This is difficult for me as a lot of the food that is recommended is milk based. I see a dietician on Thursday so perhaps this might be cleared up then. I know that they will say to cut out milk – with no fruit, veg, fibre, and no dairy this limits my food somewhat, please suggest alternatives. One thing is for certain if you want to loose weight you just have to eat very little!

On the positive side I am back in my workshop and making a few commissions, I will put my jewellery into an open house and so might make some sales, fingers crossed, and I have caught up on some box sets I can totally recommend Money Heist on Netflix and Below the Surface on BBC4. I have been reading which is an indulgence and not to feel guilty about it is even better. I am about to create a home recipe book for Rowena and have been asked by the other two to do the same for them, so a project I am looking forward to doing.

I have lost track of how many days, and I know it is 7 weeks since my operation on Saturday and three weeks since I have been at home on Sunday. My recovery is happening, when I came out of hospital I found it really hard to walk down stairs, my legs were all shaky and now they are not. Also for the first week I slept all the time, and had two nights of 10 hours – I can honestly not remember when I last did that – my 20’s! Now I am back to normal sleeping patterns of 6 hours or there abouts and not sleeping during the day. What has greatly improved is my concentration, I can now read a book and catch up on all those box sets. It feels very self indulgent to read such a lot, my teenage self’s perfect day.

However, it is frustrating as I am not really getting better and back to anywhere near normal. I was told 6 months and it is easy to believe that so, that makes August! It will be a few more weeks before I am back to doing jewellery I think. I feel I can get back but it is the utter fatigue I have that stops me. For example I get up in the morning, have a wash/shower and then dressed and that tires me so I have to rest for 30 minutes before getting on with anything else. Over the last few days I have decided to make an effort to get a bit fitter so with baby steps I am going for a walk, 5 minutes out and 5 minutes back this week and I will extend it next week. The really lovely thing about being home is resting on my bed with my lovely cat, she is very happy and is curled up next to me as a write. It is also so much better for Mark as he does not have to come to the hospital every day. His work is very busy at the moment so he is back to long hours and comes home late.

My wound is still open and I have been having it dressed by district nurses and they are weaning me off their services so I have been told to go to my surgery to have it dressed, I think they want me to do it myself now … I do like the reassurance but that does not seem to count for much. So I have resigned myself it is my care now.

Eating is still my biggest problem. I have been steadily loosing weight and now seem to be stabilising. I manage to eat a little, three tablespoons of soup for example. I am beginning to add a few fruit and veg to my diet. It is eating solid food and swallowing more than about 5 mouthfuls, that is the problem. That is my diagnosis today but I find that what works today is not necessarily the answer tomorrow. I made macaroni cheese and that was easy and delicious to eat, and then last night it was awful. The secret is to snack on a few meals throughout the day, but as it is painful and makes me feel unwell I do not really feel like eating much at all. I seem to be able to eat some chocolate and sweet things and so a few mouthfuls of this makes me feel a bit better. Easter should be fun. We are off to Devon for Easter and holiday next week. Driving down to Devon via a night with my mother in Warminster on Friday.

Mr. Lamah has finally referred me to The Marsden, however I have yet to hear from them, it all seems to take a long time.

Thank you to everyone who has sent books, messages, cards, walked dogs, cooked food, flowers, lovely scented gifts and come to visit me. Please feel free to continue to come as I am still very house bound and cannot walk the dogs yet. We are away for a week and it would be lovely to see more friends, old and new the week after next. Rowena is en route to Edinburgh for an open day, she has decided to accept their offer and will be going there in September, depending upon A levels but the offer is within her reach. We are so proud of her to be going to such a wonderful university.

28/3/18

On Friday I went to see Mr. Lamah the surgeon and was checked up, the wound is healing nicely, but will take a long while to close up completely. He had still not referred me, and was, I think waiting until this appointment to do so as he wanted to discharge me from his care. So he said he would refer me, after our meeting to Robin Jones the specialist who I had found through Rowena’s oncologist and my friend Anne Davidson. He had also checked and this is the right person we understand for rare and unusual sarcomas at the Marsden. So we wait again to see when I am contacted and when I get put into the next system. He did say before the first op that my recovery would be 2-3 months and with the complications has amended that to 6 months.

Each day this week a district nurse has been out to see me and to dress my wound, but I have been left alone over the weekend and I will see someone tomorrow. My wound is looking great and even I can see that it is healing.

This week I have reached a milestone – I am now a healthy BMI. This is so funny really as it is the most unhealthy way to reach it. I have lost nearly 2 stone (32lb) in 5 weeks, and can expect to loose more. The doctors are not worried and agree that I should just eat little and often and listen to my system as to what it wants to eat. Currently a very bland fibre free diet or Low residue to give it its proper name.

I have been totally exhausted at times and I find I need to be in bed, but I guess I am up a little more each day. Last night I slept for 10 hours, I cannot remember when I last did that – probably in my 20’s!