Update 17th April

Every day it seems like Isabel is amazingly getting thinner in some way. She is constantly exhausted now and has started being sick again despite her nose tube. Moving from chair to chair is increasingly difficult and she needs help doing everything physical. Isabel is still making the effort to come and give Arthur his lunch and watch him play in the playroom.

Anniversary

Isabel and I celebrated our second wedding anniversary last Monday, (31st March). It's a funny thing to do an event like this and know it will be your last so mixed emotions; wanted to make the night so special and enjoy it so much, with sadness that we will not share a third wedding anniversary - stuck on Paper then! I made Isabel a poem, written in proper ink and framed, while Isabel used some of her sick pay to buy Arthur and me a piano which fits in brilliantly in the living room. (The paper bit is the music!!!).

I arranged for the chef at Prospect to cook us a meal, but it ended up really being cooked for me. A delicious tomato soup was followed by rib eye steak, with vanilla ice cream for pud! A bottle of Freixneut accompanied the meal, (which Isabel is not sucking up through her nose in the picture below!!!!)

Update - 9th April

It's been a little while since my last update but that is because not much has been going on. Isabel has, until yesterday, maintained her good spirits, been able to watch Arthur play in the playroom and give him his lunch, snack and fruit.

However, yesterday there was a shift in how she is getting on. She is constantly exhausted and finds getting out of bed / chair / wheelchair very difficult. She is very thin and increasingly feeling uncomfortable. At least she is not being sick due to the tube down her nose... There is a suspected clot in her leg and the doctors have prescribed a blood thinning injection!

We have Arthur's first birthday to look forward to on Saturday. The party is taking place in the hospice with lots of people coming. Arthur has a wonderful outfit to wear courtesy of Mike and Chris - even with a bow tie, (they really are cool!!!).

Arthur's new nanny took him out to a farm the other day and brought back his very first piece of "craft" - a cut out Easter chicken with Arthur's decorations on it... very sweet!

Update 28th March

Isabel is getting really tired still but still welcoming visitors. She's being aspirated fairly frequently, (where they syringe out tummy juices through her nose - sounds a lot more unpleasant than it actually is), and this is really helping her fell more comfortable. The Prospect staff are doing all they can to make her cell as comfortable as possible.

My favourite times are spent with Arthur quietly playing in the play pen, Isabel watching or just listening, with an ice cream... The local Tescos will record an unusual spike in sales of ice lollies despite a cold spring!!! (It helps Isabel's throat!)

We had our piano delivered yesterday and Arthur (and I) had our first play:

Arthur's first piano play: http://youtu.be/gMwnTEKyZg4

Update 23rd March

Not to much to report but Isabel is now a very proud Aunty. Despite a difficult birth, (mum and baby fine), Hugh Thomas is now with us, a little cousin for Arthur.

The nurses tried to put a tube down Isabel's nose today. The idea is to drain the contents of her stomach to relieve the pain and make her feel and be less sick. However, both times that I was the, sure fetched the tube back up. A pretty horrible thing to have done and Isabel is so courageous to have it done three times.

We now have Daisy with us for a few days. I need a good rest I think!

20th March

I've always believed in never giving up until the end, in fighting to the final whistle. If 10-1 down in a match, getting back to all-square. Honour in being hard to beat. Even hopeless has hope in it, (thanks Red Dwarf).

Isabel has now had a full blockage and is unable to digest anything. We are to think of this as the beginning of the end. Whatever energy she has now must be expended on important things like Arthur, her parents, me, resolving things. Amazingly, Isabel is still thinking of others - she has put her savings into a trust fund, held a family meeting on the future for Arthur, writing cards and notes for him in the future.

The immediate targets are:

1. Hugh's (Isabel's brother's son to be) Birth
2. 2nd Wedding Anniversary (31st March)
3. Arthur's first birthday, (12th April)

We are having no visitors except essential ones.

A lot of people ask about how I'm doing. I am eternally grateful for Arthur, for the best 2 years of my life married to such an amazing ad brave woman. I said goodbye to a "normal life" a long time ago and have a completely different perspective on things. The fragility of life, how quickly things can change, the importance of each moment with the ones you love. There is no internet guide on this, no book on how to react and behave when your young wife's time is coming up soon. I hope I will be able to look back and say that I did a good job, had no regrets, wouldn't have done things differently.

Prospect 2

Not too much to report today. Isabel continues to be sick and not eat much. She is exhausted and not up to many visitors during a day and is frankly too polite to ask them to leave. Luckily the hospice has a  beautiful garden to wander around and a quiet conservatory to sit and chart in. It certainly is a peaceful place to be.

Prospect

Isabel is now in the Prospect Hospice. She has a lovely room, looking out on the garden, with its own patio door. She is comfortable there and, to be honest, it is a much better place for her and Arthur. She can watch Arthur play in a relaxed environment - they have a little play zone for children - and there are nice comfortable rooms to go to and a quiet, sunny conservatory to talk with people. Unfortunately she is still being sick and can't keep anything down, despite the constant anti-sickness drugs. Chemotherapy seems a remote option at the moment.

The staff at the Hospice are lovely. The Pinewood Puffers had a tour last year after our half marathon efforts, so I've already have a sneak-peak at the facilities. The quiet room, aka the chapel, is a silent place to spend time talking.

If you would like to contact Isabel, her phone reception is very bad in the hospice. Best to give them a ring on 01793845037 and ask for Isabel. To visit, Wroughton is just off the M4, south of Swindon.

13th March

Well, not too much change to report at the moment. Isabel is still in hospital but has now been given some food to eat. It has not stayed down for long unfortunately and so they have put Isabel on a constant sickness-reducing syringe thingy. It's hoped that once the anti-sickness kicks in, she'll be able to eat. However, we have now got to the stage where we are discussing home, hospice or hospital and, to be honest, if Isabel can't start chemotherapy soon, there will be little else the doctors can do. I am going to stop work at the end of this week, miss the last two weeks of term so I can do whatever Isabel needs me to do and, of course, spend as much time as I can with her.

Update - 11th March

Well, Isabel is still in hospital and still not eating. The doctors are still insisting that a rest for the bowel is the best thing, and, although we have absolute trust in what they are doing, it feels to me that Isabel needs to eat - even just try to eat something. Luckily, she has now been moved back to her favourite ward - Meldon Ward - where we know lots of nurses. Meldon Ward was where Isabel was taken after her initial bowel surgery and actually spent a short time while waiting for a bed in Dove Ward a couple of weeks ago. Funnily enough, Isabel was telling me that her favourite moment in hospital (!?!) was in Meldon Ward when she was on the mend and able to eat more and more, feeling better and better, way back in May last year.

We also talked today about a meal that she would have right now if she could have anything. The answer? Well, a ploughman's with bread, ham cheese, a massive pickled onion, lettuce with Caesar salad dressing, and square crisps. There we go then - I know what to stock the fridge with when Isabel comes home!!!

It is a massive frustration for me to be unable to spend time with Isabel and Arthur together. He is not yet a year old and they have spent too little time, especially recently, together. Isabel says that it is as desperately sad not to see Arthur as it is to say goodbye to Arthur at the end of a visit, (which are too short - he is too inquisitive about all the apparatus in the room). He took his first 2 unaided steps today - imagine how much I wanted Isabel there to see it and share the moment with me...

Update 10th March

Well, Isabel is still in hospital, despite hopes of getting out sooner. She thinks the doctors are being more cautious this time and don't want to release her until they are sure that she is able to keep down food. They are also thinking about starting chemotherapy again tomorrow while Isabel is still in the ward. She is very weak at the moment and can't really move around - bare in mind that Isabel hasn't eaten for about 3 weeks now...

I'm very grateful for our nearly-neighbours for taking Arthur tomorrow morning at late notice so I can fulfil my school commitments. It's getting harder to justify going in each day but at least in school my mind is distracted.

So, more of the same - Isabel in hospital, me looking after Arthur, and grandparents to-ing and fro-ing to help out.

We all await the arrival of the caravan with much excitement though!!!

Back....

Unfortunately, Isabel was re-admitted this evening at around 5:30pm. The sickness had been really bad, and she wasn't keeping down anything - even the high calorie energy milkshakes. We are so lucky to have people around who can drop things to help out - a neighbour who took Arthur while I took Isabel in and godparents who came to sit with Arthur asleep while I spent a couple of hours with Isabel this evening. I've just got back from the hospital; Isabel is the Acute Medical Unit and is not looking forward to the night there - it seems like a 24 hour, round-the-clock, ward. Hopefully, they'll move Isabel back to Dove Ward where at least we can bring Arthur in to see her. However, one does wonder why Isabel was let out on Tuesday only to be readmitted on Saturday. They obviously hadn't sorted the sickness, or was Isabel eating properly. It is unclear on how this might affect Isabel's chemotherapy on Monday. I suspect it will be delayed. Isabel herself has mixed feelings - the chemotherapy has a chance of reducing any blockage, but at the same time is a terrible thing to go through for a few days.

Out...

Great news - Isabel is home!!!! However, she's feeling very weak and unable to look after Arthur on her own. This means that I am going to stay home from school tomorrow and make sure that she gets lots of rest, and that Arthur is taken care of. The bag of drugs that the doctors sent Isabel home with weighs a ton - reminds me of carrying bags of food back from the Korean supermarket where I didn't have a car! She's got numerous anti-sickness drugs, (didn't really work tonight), steroids, pain relief in various forms including a squirt-in-your-mouth form of morphine. We're going to take it really easy tomorrow, (well, Isabel is - I'm going to be chasing around after Arthur!). As my sister, who by the way is a super star, found out - it is a full-on job, especially now he is crawling. Before, when Isabel originally had her operation, he was content to be in his car seat. Now, he is very inquisitive!

Coming Home Soon!

Well - good news! Isabel might well be coming home tomorrow. I think the doctors reckon that they're not actually accomplishing much in the ward, so they might as well send Isabel home. However, she's still being ill and has lost a lot of weight. That said, Isabel seemed a lot more perky with the news that she might be coming home, so hopefully the relaxing feeling of being at home, with Arthur a lot more of the time, will have a beneficial affect. They are going ahead with the pic line tomorrow, presumably with the aim of starting chemo next Monday. Family reunited!

Update: First Day of Spring

Well, not too much change to report. Despite a lovely day weather wise, Isabel is still unable to eat anything substantial and continues to be ill. She was offered the opportunity to go home at some point over the weekend, but, on advice from various quarters, has decided to stay in for the weekend and aim for Monday. It would be dreadful to have to come back in and go through A&E again, and also to "go home" and then have the disappointment of coming back in again. Arthur is doing well, although I'm not sure he's to impressed with the constant taxiing from home to hospital and back again. Hopefully, more news on Monday when consultants and oncologists are back in...

Update 28th February

Well, despite numerous hopes of getting home, Isabel is still in hospital. Unfortunately, we seem to be making progress, but then she'll be ill again will need to stay in longer. What the doctors need to see is Isabel eating okay for 24 hours without being sick. Today, the doctors drained some of her tummy liquid which may have been causing some gip. Amazingly they managed to drain 1.8 litres of yellow frothy liquid... sounds nice! To be honest, these are not good signs though. We need Isabel to be up and moving in order to start chemo, and at least keeping down some high calorie drinks. It's a funny thing to say that we are desperate to start chemo again give the side effects that it causes, but it seems like the best option at the moment. Isabel is thinking about shaving her head. I need to have a hair-cut soon too - we'll be a matching pair then!!!

Update - 26th Feb

Well, no meeting with the oncologist today, but we are going to see Dr Lowndes tomorrow afternoon. I'm doing a morning of school, and then going to spend the afternoon with Isabel. Hopefully, she will have eaten enough for the doctors to let her come home which, to be honest, would be a massive boost. It must be horrible to see your son for only a short time every day. Unfortunately, there are too many things for Arthur to play with (and get frustrated when he can't), not to mention our worries about being in a hospital for an extended time, that we don't want him to stay for long. The concern is that if Isabel comes home and isn't well enough, she will have to go back into hospital and go through A and E all over again which is not pleasant. I was able to take her for a short walk around the hospital pond in today's sunshine and then in the afternoon, Isabel was able to come downstairs for a coffee in Costa for a little while to escape the confines of her room, (which has got a lovely view by the way of the hill where I proposed!!!)...

News 24th Feb

Well, we've had some more information about what has caused Isabel's recent illness. The tumours in the peritoneum have grown, (now they're not being suppressed by chemotherapy), causing a blockage of the small bowel. This in turn is causing a dilation of the tubing, backing up any food to the stomach and causing the sickness. The doctors have advised Isabel not to eat for 48 hours and prescribed a course of steroids, in the hope that a rest will help the bowel return to normal. Following that, the sooner Isabel can start chemotherapy again, the better. Needless to say, this is a serious development, especially if the blockage doesn't clear. We are talking to our oncologist on Wednesday who may be able to give us more information. The "best case" scenario is that the blockage clears and Isabel can resume chemotherapy on Monday 10th of March. However, this is likely to be her last course of chemotherapy and after six months, we may well be in a similar situation.

Recent News

Isabel is currently in hospital, awaiting more information about recent symptoms. At the time of writing, it looks like the cancer in the small intestines is causing a partial blockage meaning that there is some dilation. This is backing things up to the stomach, causing the sickness. She's being well looked after in Melden Ward at the Great Western Hospital. Hopefully, we will have more information tomorrow.