Items in the Church

I went to visit Isabel's grave today. As I walked down to the grave, the sun broke through the clouds and shone brightly over the gravestones. As I was there, a magnificent rainbow appeared behind me, above our engagement hill. I think it meant that Isabel was pleased to see me and happy with the funeral service.

For the record, here is a list of the items scattered about the church at Isabel's service.

 1) Red Jacket. Isabel would very rarely be outside without her red jacket on. We did so many walks with her wearing it!

 2) Bottle of Freixneut. We had a bottle of Freixneut in our room when we arrived in the hotel in Madeira on honeymoon. We bought a few more later on in the week! The day before Isabel knew that Arthur was on his way, we had cycled to the Olympic rowing at Dorney lake and back again. In the evening, we drank a bottle of Freixneut and ate pizza. We should have guessed something was up when Isabel ate a whole LARGE pizza!!!

3) Black Hood Scarf. I brought this for Isabel for the first Christmas we were together. She wore it so much!

4) Lamby, (toy lamb). If you looked really closely, you would see that Lamby was wearing socks saying "I love my Mummy". This was a toy that Isabel bought for Arthur while in Mothercare. It was a toy that Arthur really seemed to go for in the shop. Isabel had it with her in the hospice.

5) Walking Boots. We met walking in Newbury and did many walks subsequently. A particular favourite of mine was scaling the Quantocks on New Year's Day 2012 - the beginning of a magical year!

6) Phonics book. Isabel is very keen for Arthur to know his phonics! She also loved teaching them.

7) Large Knitting Needles. Probably the hardest to spot above the picture. With these needles, Isabel knitted my big blue loop scarf . She also starting knitting a number of items for Arthur and me whilst undergoing chemotherapy. I may learn to knit so I can finish a couple of them...

8) Keep Calm and Keep Pedalling T-Shirt. Something I bought for Isabel, symbolising our love of mountain biking on the Ridgeway. Isabel wasn't always the most stable and kept falling off!!!

9) Bike Helmet. Needed for all those times Isabel did fall off!

10) Claude, the French Puppet. Isabel loved teaching everything, including French at Pinewood! This puppet came in handy!!!

11) Badminton Racket. Badminton was something Isabel loved playing. We always joked around wondering who would win if we played. We never did play, but I reckon Isabel's skill would outdo my height and power!!!

12) Euphonium. Isabel started to learn how to play the Euphonium when visiting Pinewood when I lived in the cottage on-site and worked Saturday morning. During the Summer when we first met, she came to watch a number of performances by the Sandhurst Community Brass Band.

13) Yellow Scarf. One of Isabel's many scarves!

14) Teapot. Symbolising Isabel's love of afternoon tea and cake!

15) Purple Hat. Again, something Isabel would wear out and about. She had many hats, but this is one of my favourites!

Let me know how many you spotted, or would like to know where any were hidden!!!

Montage from Funeral

Resting

It's hard to know where to start with this post. I guess the important bits. Isabel slipped away peacefully in her sleep last night. I was with her holding her right hand, and her parents were on the other side of the bed with her left. She was so calm and relaxed and her breathing just slowed and slowed until finally it stopped. This was at about 12:30am this morning. She had the dignified end that she deserved surrounded by people who loved her very, very much.

After so much battling and fighting, the end came very quickly. The nurses put her into bed at 6pm and gave her something to help her sleep. By 9pm, when I came in from putting Arthur through bath and bed, she was sleeping and we all sat with her for the next few hours. I am so glad that her parents and I were able to be there.

That afternoon, she had been sitting up, chatting to her brother and sister-in-law, even giving Arthur his banana at 3pm or so. She fought so bravely until the the end and then left us in the manner she wanted.

I think back to how she was when she arrived at Prospect Hospice, all those 6 weeks ago or so. It didn't seem likely that she would last a couple of weeks, let alone the time that she did. She had a good quality of life - being able to first of all have the mummy express, (carrying Arthur around in her wheelchair), then watching and listening to him play, and then, finally, giving him his banana. I think of all the events that she enjoyed in the Hospice - our second Anniversary, Mothers' Day, Arthur's birthday, Easter...

The world has lost someone very precious today. Isabel is now resting in peace.

333, 222

3 minutes without air, 3 days without water, 3 weeks without food. Isabel has now gone six weeks without food in the Hospice, plus whatever it was in hospital barely eating. Since the penultimate day in Italy, (19th Feb), she really hasn't eaten. Amazing!!! That said, she is understandably very weak and goes through stages of exhaustion and un-comfortableness. She's still making it to the cafe to feed Arthur and can watch him play in the play area of the Hospice.

The original diagnosis, when we finally actually got it, was 2 years. That was on May twelfth last year. Isabel is now probably looking at 2 weeks - maybe up to four weeks - left. Then there will be 2 of us....

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.

Birthday!!!

Isabel made it to Arthur's first birthday!!! She was delighted to open some presents quietly with him in the morning and then rest up a bit - with her brother Owen - until party time at 3pm. She was able to stay for the whole party and loved meeting everyone though we were all a bit tired by the end of the day. Arthur looked immense in his new outfit - love the bow tie - and got soooo many lovely presents, (and amazingly no repeats!).

More pictures HERE

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!

Barn Dance

Prospect Hospice are holding a Barn Dance this Saturday. Isabel and I would have gone, but find ourselves unfortunately unable to attend. Please go if you can!!! Here is a picture of when Isabel first met my parents, and not long after we had first met, at a Barn Dance my sister arranged:

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.

Reasons!

The reason for this blog was originally for people to see what Isabel had been up to, and the special things that she wanted to do in the time left. The idea is that you use the form to suggest an activity, possibly a time to do it, do the activity, and then write a brief report on the day - including pictures. Everyone then has a record and pictures which have increased significance now we know what we know.

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...

Anger

I feel bloody angry. A year ago, things were pretty good - so I guess this might be a lesson in complacency - appreciate what you've got while you've got it! I had a decent job which I loved, (not to mention great holidays!); a beautiful wife full of the joys of life and coming up to our first anniversary; a baby on the way, (and what a joy he's been!), and my pretty good health. The best year of my life has turned into a mix of happiness - and those who have met Arthur will agree he's an absolute joy to be around, (Isabel's genes there, then!) - and a seemingly endless stream of bad news. I remember when I was first told of the cancer that Isabel might have a number of years, but I don't think it really sunk it; the news that one's wife has cancer at the age of 34 with no previous or family history, is quite a shock. Prognosis, mistakenly, was then assumed to be 5 years. Eventually found out to be actually 2 years. Now, it looks like another year will be lucky. If Isabel can't restart chemo, not long - we've not asked that question. So now, I'm home alone, (just watched England lose at cricket again), with a young son who, although I have the best intentions, I have no idea what the next stage is, and a wife in hospital and endless shuttle runs between the two. Yes, I'm pretty pissed off right now...

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!!!)...

Italy

Over half term, Isabel and I went to my parents' house in Italy, near Cortona, for 4 days. We had a lovely, relaxing time - although a certain little man managed to catch a cold which meant we didn't sleep so well! On the first night, we were really treated to some home-made pizzas, fired in the pizza oven built into the centre of the house. My 3-cloves-of-garlic beast was my favourite, although some spectacular combinations were created! On the Monday, we went to Montepulciano - a place Isabel had been to before - to visit the presentation of the new Nobile wines. This was basically a show where all the vineyards in the region could offer their new nobile for tasting. An ingenious invention is a pouch to wear around one's neck to carry a wineglass, enabling one to make notes on each wine. However, I was driving so I could only sample one Nobile! We then had lunch in Cafe Poliziano just down the main street - delicious pasta and pate! Tuesday was a gorgeous day, where we spent the morning in the sun on the patio - beer at 12 - and then the afternoon, in my case, sleeping off the drunkenness!!! Fortunately, Arthur was content sleeping and watching Mary Poppins - so I wasn't disturbed too much! On Wednesday, we went to Assisi to have lunch and look around the church. Unfortunately, this is when Isabel started to feel sick and so we didn't appreciate the amazing Basilica as we maybe should. Driving back was difficult, given first of all the thick fog in the mountains, and then the relentless rain all the way up the A1!!! However, we made it - I can't say I was too happy to say goodbye to our nice Alpha Romeo upgraded car - but it was good to get home again. All slept well on Thursday night!!!! Pictures are HERE!!

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.