I came home on Sunday and it was really wonderful to be allowed to come home on Mothering Sunday. All three girls were at home and spoiled me rotten. I have to admit it was scary leaving 24/7 nursing care to come home and I had thought I could manage on my own during the day and have Mark and Rowena look after me in the night, however as it came closer to happening I got really worried about this. Tessa has a job that she can work remotely and so she has been at home for all day Monday, and Tuesday and Wednesday mornings. I have organised a few friends to come and see me in the afternoon. It has worked well as I have not really been alone and so it has made all the difference.

On Sunday I did a bit more and consequently on Monday I was totally out of it, and slept most of the day. I still get awful pain on digesting food. It has been so helpful in hospital to be with Jacqui who had been taken off the TPN at the same time as me and we both got stomach cramps with eating at almost the same intervals. So we were both reassured that this was totally normal. It is great as we are keeping in touch.

Yesterday I felt low, and today I have woken more cheerful and the cat is purring on my bed and the sun is shining. All making me feel more positive. Currently I have taken no pain medication and feeling fine. On Friday I am going to the final follow up with Mr. Lamah following my operation and hopefully will be referred to the Marsden – this is my continuing frustration (no referral).

Thank you to all my dear friends who have sent cards, emails, messages, advice, cooked, walked dogs, visited, bought gifts, and supported me and my family over this last month, it is a lovely feeling to have so many friends and family whose continuing support makes all the difference.

I had my original operation on the 10th February and 9 days in the Montefiore and the rest here in the County. It will be good and slightly scary to go home. I have been used to being looked after and this will change once I go home. The best laid plans were that my mother would come and look after me as I was going to be 10 days post operation, but now I am four weeks post operation I feel I need less looking after and she has the most awful cough and cold and would not really be up for the drive. It is a shame for us both as I was looking forward to spending the time with her, but it is totally the right decision. My surgeon is happy for me to drive if I feel I can do an emergency stop, which I think I could and so is the insurance company.

Rowena is at school until she breaks up for the holidays on Thursday, and Tessa has volunteered to work from Inholmes on Monday. Are any of my lovely supportive friends able to come and give me a hand on Tuesday, Wednesday, Thursday? I do not think I will need much – but perhaps to help get supper for Mark and Rowena in the afternoon? They have been coping, but I expect it will be hard for me to watch them, and it might be easier if I have help earlier, and a little company.

Once I am at home I will not be blogging on a daily basis, I will post things as I have something major to say, but will just be quietly convalescing. So no news will be good news, it will mean I have just had a boring day. What I am waiting for now is to move from being looked after by surgical teams to meeting medical teams, in possibly the Marsden, to learn about my tumour.

Today I am waiting for a discharge letter from the doctors. My nurse on Friday has got my medicines ready for going home, and so I just have to wait for the doctors rounds. I am aiming to leave at 1.30.

On the ward round the consultant was happy with me, and so with the nutritionists they have taken me off the TPN at 2pm yesterday and agreed I can go home on Sunday. That is a lovely Mother’s Day present, the best I could have, to be at home with my daughters, and having lunch at home!!!

So yesterday afternoon after a visit from Vicky I went home with Tessa and we had a lovely quiet time together and she bought me back. It is strange to be in hospital and not hooked up to a machine. I think they want to monitor me and check I am ok, do some blood tests I imagine and then take my line in my arm out and then I should be good to go. It is most satisfactory.

Jacqui who has been in the bed opposite to me has also been on TPN and we were both taken off it yesterday. She will probably go home after me as her fistula is still leaking, but she is eating well. Otherwise everybody else is different in the ward, and very quiet, I had an amazing nights sleep and it is so good not have a machine attached to me.

Rowena and Mark made it up to Glasgow and so we now wait and see what their verdict is ….

As my stay in hospital draws to a close I have a few musings on my stay. I have really seen the creaks and groans in the NHS with bed shortages, and that the lifts have not been working. The building, as I understand is managed outside of the NHS and it is hard to get light bulbs changed etc. and I guess lifts come under this, for the first time both lifts were working yesterday.

However the most amazing thing about both the private and NHS care have been the nurses. It makes such a difference is they have the ability to empathise, and give TLC. There are nurses who are very qualified and efficient but lack that ability to care, sympathise and just plain bully their patients into doing what they want and this just causes suffering. But when the nurse has a kind listening ear and a tender hand it makes all the difference.

The surroundings are better in the Montefiore and the physios were so much better and it was amazing that you were got up and out of bed, I have seen little of that here in the NHS and I am sure it contributes a lot to your recovery. However it is all the specialist teams at the County like the Pain team, the stoma team, and the general expertise which is impressive and makes me like being in an NHS hospital. To have been kept alive on the TPN was incredible and has been the factor that has made me better.

Yesterday was a good day as Mr. Lamah has told me that if all goes well with the eating and if the nutritional team are pleased I will be able to go home on Monday. He also told me he had yet to refer me to see any oncologist. As I have cancer I am so frustrated not to have met or seen anybody who will be looking into this, and answering the many questions I have.

So I have had my calories reduced so I might have a bit more appetite and then the feeding bag will be taken down on Saturday and I will see how I get on with eating and being monitored. This all might be tricky as I don’t really want to eat much. I hope that I will be able to go home at lunch time on Mother’s Day and so eat our normal meal. That would be lovely.

The lifts keep breaking and three flights of stairs are a bit daunting so I stayed in hospital yesterday with Lucia and Alison, Rowena and Mark visiting.

Rowena and Mark are off to Glasgow Art School today and fingers crossed for a good interview for Rowena.

Having had such good news two days ago, I had a morning of pain, tiredness and low spirits. I guess this is a bit of a pattern. The pain was my newly rested digestive system objecting to having to work again. Also the nurse decided that not only was I to eat, I had to take my medication orally and this meant that the pain relief was not working. So I have gone back to IV and liquid pain relief and this makes all the difference.

Eating is a bit of a challenge, as I have a fungal infection in my mouth so everything tastes metallic. Also I have little appetite and the hospital food is not really appealing. I am on a low residue diet, and I have a list of what I can and can’t have, so this makes it easier. I am trying hard not to overdo it.

I saw a friend Hayley and then Rowena picked me up. It was good to go home and help Rowena with her plan to go up to Edinburgh and get her 16-25 ticket renewed. It is the sort of thing I normally arrange and neither Mark or Rowena do and it is easier for me to do, it is good to have some normality.

Mark gave me a lift back, I managed to sleep all the way back in the car! Not good company, but he is just happy to see me.

Today I am really inspired to write as I have had such a positive day yesterday on so many levels! I have good news a plenty.

The output to my bag, i.e. the contents from the leak have now dried up and this morning there is nothing in my bag – this means that the fistula is healed at the source and that is the best outcome and it took the minimum of 2 weeks to do so. The healing TPN food fed to me by vein has kept me going and allowed my body to mend and I am so grateful that I live in this day and age that these miracles are able to happen.

So as it was going in this direction my consultant Mr. Lamah came to see me and said I could start eating, so yesterday I had a very small amount of chicken soup, a little mashed potato with cheese and jelly. But best of all I could have a cup of tea, it was the only thing I really missed. I am amazed that I have not felt hungry at all and in fact it was a bit of a relief not to eat. So the little eating I did stayed where it was supposed to go and did not reappear in my bag. Everything seems to be working well.

The next piece of news is that I finally have a diagnosis ….. Wait for it

Maesentgeric fibromatosis/intra-abdominal desmoid tumour (a Desmoid tumour for short).

This is a very rare type of sarcoma (solid tumour) and happens to 0.03% of cancers. So both Rowena and I have had rare sarcomas. I great this with mixed emotions as hard to be in a group of people who suffer from something rare as there is no support group. If you are diagnosed with something that others have then there are charities, information and support. With Rowena we only ever found one other person whose daughter had the same as Rowena and survived (and then three others who had it in different places). The oncology CNS/Matron at the Montefiore had never heard of it, to put it in context, and she has been looking after cancer patients for many years.

The better news is that because it is rare I am going to be cared for by the Sarcoma team at the Marsden, so I am pleased about that as that is about as specialist you can get and so will have the most up to date treatment possible. In the little research I have done it looks like the first line of treatment is remove the tumour whole and then that is it. This has been done, my surgeon is 100% certain he removed it all. The downside is that it has a 50/50 chance of coming back and the second line of treatment is more aggressive as you can imagine. However this is information from the internet and The Marsden will have their own opinion on what will be done and so I wait and see when they contact me.

The final result was that I wore a dress to parents evening! Rowena had been adamant that she did not want her teachers to know that I am ill, so apart from the housemistress, one of the teachers who I tap dance with and one dyslexic teacher Rowena has confided in, no one knew. So we kept it that way. It was physically hard, walking up stairs is tiring, but doable for me, and just being on my feet for a while is quite exhausting. But I am so glad I made it.

Our first parents evening was in 1998 with Mrs Ward at Burgess Hill School, its will forever be etched into my memory she had us all sitting on the tiny chairs provided for the 4 year olds and she sat in the adults chair. She talked down to us all and told us exactly what she wanted of us. I don’t think that any of us dared even to ask a question! Skip forward this was the final one 20 years later. I am so proud of Rowena they were so happy with her. She and Mark are off to Glasgow on Friday and fingers crossed for that interview, this is where she really wants to go although Edinburgh is a close second and she might change her mind after the course open days. I hope she gets the choice, but Edinburgh will be a great destination if she does not.

I think I have approximately a further week here transitioning from the liquid food to a low residue diet, and then a few months to get me back to normal. A long slow process.

My day begins with being woken at 6ish by the healthcare assistant on the ward doing morning observations and a blood sugar pin prick test. However in reality I seem to wake in pain at 5. Then most of the ward goes back to sleep. At 7 the lights go on and the handover begins to transition from day to night staff. At night there is one nurse and one healthcare assistant looking after 12 patients and during the day there are two nurses and one healthcare assistant.

The staff work extremely hard, and I think the night nurses have to do meds for 12 at the beginning of their shift and this can take up to 2 hours. To do the shift of 12 hours is really tough.

Breakfast happens next for those who are eating and then the healthcare assistants and nurses get everyone up, washed if they need help, bedding changed and sorted.

From approximately 9 onwards the doctors ward rounds start to happen with the consultant followed by their junior doctors and medical students – do you remember Doctor in the House? It has not really changed much. The consultants and the matrons have all the power. Lots start to happen after this as tests need to be carried out, the phlebotomists come round for blood tests, pharmacists consulted. I have also been seen by stoma nurses, who monitor my bag where the fistula has been getting rid of what ever it wants to get rid of from my body into a bag, and change it where necessary. The nutrition team who look after the TPN (the food) and look at the blood results and tweak where necessary.

The physiotherapists come and help people up an about. The ward is a bustle and hive of activity. Lunch is at 12 and then from 2-3 there is a rest period on the whole ward, blinds are drawn and lights out and no teams are allowed to come onto the wards and supposedly no visitors. From 3 – 8 is visiting time and then from 8-9.30/10 ish is meds and getting ready for bed. The hand over is 7am and 7pm.

It is very regulated and a set pattern and I find myself adapting to the ward cycles. I have good days and bad, some pain free and some in pain, I generally find if all my pain medication has worn off I know it, but if I keep myself topped up I cope. Yesterday I was picked up by Rowena and went home to see Graham, one of Marks best friends and it was lovely to see him. Yvonne had come and kept me company before Rowena came. Today I hope to pop out to Rowena’s final parents evening. I usually dress for these parents evening, they will have to cope with my baggy exercise trousers and comfort. (I am hoping I have found a solution to my dressing and might get a dress so I don’t let the side down!) Most of Rowena’s teachers do not know that I have been in hospital and not so many parents, so it will be interesting to go in.

I read this back and find it a bit dull so I do hope I have not bored you all.

If there is anything any of you want to know then I am happy to share other information and any ideas are welcome.

Well it dominates our household when at home and so I guess it was always going to be important when in hospital, as many of you know Mark is a Brighton and Hove Albion Football supporter man and boy and was absolutely thrilled to watch his beloved team beat Arsenal yesterday at the Amex and said that the atmosphere at the stadium was amazing. He was grinning ear to ear and it was lovely to see that he had been distracted and given something to smile about.

My day was not nearly as exciting, I had morning rounds from the doctors, I have very much enjoyed having Miss Patel as the surgeon consultant doing the rounds this week she is a very strong and direct consultant and has a great bedside manner which tells you exactly what you want to know in words that are unambiguous. So it was great yesterday when she looked at the output of my fistula and said that she predicts that this is closing and the regime I have been on is working. I do not know how much longer I will be here but it is good news. I have had very little output and no gurgling noises yesterday.

I then went home, and this time I forgot to take the secondary pain killer and so when I got home I felt a bit deflated and tired and ended up spending most of my time at home asleep in my bed. It was lovely to be home and I felt a bit guilty that I had not spent time with Isabelle and Rowena and Mark. Tessa had come in to see me in the hospital in the morning.

So I think the plan this week will be to start me very gently back on to food and see how my system copes with it all. I am sleeping much better in this ward, and generally I am getting 7 hours of sleep (a bit interrupted).

Everyday I am met with a blank page and think, I have no idea what to write and then it starts to come to me. I had a good day – I have managed to get home yesterday for a few hours, it was lovely to see Isabelle who I had not seen the week before as she had a cold and to spend time with Rowena, Tessa and Mark.

The girls have been so supportive, Tessa without any prompting did all my pj laundry and had it all ready for my return and has been looking into scars and has bought me some bio oil which is supposed to work miracles on scars, so I am religiously using it on the bits of scars I can get to. Rowena managed to help me in the bath the other day and was so sweet in washing my hair, I am not supposed to get my PICC line wet, which is in my left arm and this makes it awkward to wash my hair. She said I had done it enough times for her. Isabelle is so like Mark; Rowena, Tessa and I were laughing as it was cold and wet and we thought that Mark and Isabelle are happy to take the dogs in these circumstances and then wash them because they are smelly (although I don’t think Mark would do the latter) and the other girls are less keen. She is also a great cook and enjoyed cooking the Sunday Roast each Sunday.

It has been nice to be on this ward as the lady opposite is on the same system as me and so it is good to compare notes, however I think my output from the fistula has dramatically reduced and hers has not. So a good sign for me and a poor sign for her sadly. This is the first stage and the second will be whether or not I can eat. It has been extraordinary I have not felt hungry at all. I guess when the body is getting all it needs then hunger is irrelevant. I have lost quite a bit of weight a stone and 2lb and still going down. The irony of all of this is a healthy BMI is only 5lb away for me and by being ill I will achieve my goal!

All I can think of to write today is about where I should be now. Mark and I had planned to go to Singapore and Australia on holiday from 22nd February and back on 7th March and today we should be at our niece Zoe Hutchinson’s wedding to Mark (Coop) Cooper and it really sucks to be in hospital and not to be there to enjoy their lovely day together and enjoy all their celebrations. As I sit here writing I wish to say that I hope they have a wonderful life together with as much joy and happiness that I have shared with my Mark.

Yesterday was a red letter day for me, I have now got a 6 hour break in my feeding regime and this means I can exit the hospital. I was just planning on going on Saturday and Sunday home, but Rowena finished school at a good time and so was able to collect me and Mark bought me back. So despite the dire weather warnings it was not nearly as bad as they had feared in Brighton I escaped home. I must apologise to my friend Maryann who I neglected to tell I was going home who valiantly came to visit and I feel so bad. However, it was so really great to get home for four hours and be with Tessa and Rowena and Mark. It was lovely to see the dogs and cat who clearly have missed me and told me so by loving care. So I just sat and watched the latest episode of Greys Anatomy with Tessa and Rowena (a Friday ritual with us) and had a bath and sat in my bed ….. all bliss to be there, I will never take my home for granted again it was wonderful.

However good it looks that I went home, it is a false reality. I am spending 18 hours in hospital, I am still on regular pain medication which if I do not get the pain wakes me up, I am monitored and pin pricked and life in hospital is no bowl of cherries. My wound has a large gap which is behaving and beginning to close, but until it does still “leak” and last night the dressing burst open twice drenching me in foul liquid – not a good way to wake up. I still do not know whether or not I will be able to eat and this is the crucial factor. It is patience that is required and it may be up to 3 months waiting for it to work with a few food days trial and error to see if it is working. The signs are hopeful, but it either will or it wont. So even though I am going home which is lovely it is just a break from living on the ward (Millenium Wing, Level 9a East, Bay 3 bed 2).

The new ward is better for sleep, I sit in bed in the early morning sunshine which is a real bonus.

I would still like visitors, or just picked up and taken to either your home or my home to escape from 2pm. Or if I stay in hospital visiting from 3-8.