cookiemeg

goodbye

2011-03-13T14:19:26Z

wednesday 23rd february 2011

my dearest husband died this day.

he had been admitted into a hospice for respite care and he just relaxed whilst under their wonderful care. He was there for two weeks.

I was with him at the end, whispered in his ear that we should sleep now as it was 4.35am and he had been very restless up till now. He slowly relaxed. I said again ' let's fall asleep together. I'm here with you'.

At 6.15 I woke with a start to a silent room. He had passed away within the previuos 30 minutes. The nurses had been checking regularly, their last one was at 5.40am and he was sleeping.

The funeral was on monday 7 march. The sun was shining brightly and over 200 people came. Our 9 year old daughter was wonderful and read out a poem her daddy had written and our 6 year old wrote a message that was read by a very close friend. I am so very proud of them.

but now there is a huge gaping hole in my life. I know time will heal but time doesn't help on a day to day basis.

He was loved so much and I am so very very sad.

more bad news

2011-01-18T22:44:03Z

Hello all

Sorry I haven't been around for a while. It's been beyond difficult here at times.

Since I last wrote, my husband has had another stent fitted as the first had slipped into the stomach, which made eating virtually impossible. He had 3 units of blood transfused on new years eve due to severe anaemia again. His levels were down to 8 and a healthy male of his age - 45 - should read between 14 and 18.

He has lost 2 and a half stones in weight since in recent months due to disease and such obstructions and sickness.

He has fought so hard to gain strength and it has been a hard battle. A meeting with the team at the Marsden this afternoon told of an upward trend in tumour markers - 300,000 four weeks ago, 1,000,000 two weeks ago and todays test they estimate at being 1,500,000 (results tomorrow).

Having been told to expect long months in November it was somewhat of a shock to be told today that time should be measured in weeks. Food is now secondary to the disease and we should work on the premis of making things comfortable.

The disease in the liver is very apparent, not only through difficulty with digestion and absorption, but also visually with yellowing of eyes and skin.

I love my husband deeply and wish I could take it all away so he can see his children grow but I can't. He's tired now and feels strangely relieved that he no longer has to fight this nasty battle.

I pray that his last few weeks are as peacful and relaxed as possible under such sadness. x

what a week

2010-12-04T07:45:04Z

A week or so after the stent was fitted things started to settle down for my husband. he found himself able to drink the super-calorific milkshakes with relative ease and managed a bowl of soup at the same time and speed as me. it felt like happier days were on their way.

Three days later it all went belly up. The acid from the stomach now has a clear passage way to erupt into and the fast tabs hubs was on were creating mucous and making him sick. The pain he has been in has been unbearable to see. Oramorph just disguises the pain and doesn't help find the cause. We thought the pain was due to the stent but it is more likely due to the acid reflux. Medication has been changed to something disolvable but after 6 days in bed its not looking like there is much improvement.

He is unable to keep much down at all, looks weak and poorly for the first time properly this year. The smell that comes when he is sick is beyond description. It's not the normal 'sicky'smell. He was such a strong man and I have never known him take to his bed for such a length of time before.

Poor poor him. I don't know how to help him for the best.

still struggling...

2010-11-21T13:53:32Z

Hi all.

The stent was fitted on thursday and my husband came home friday afternoon. He is in a lot of pain which he describes as local to the tumour. The stent is a hefty one - 12cm and has been fitted right to the junction of the stomach. Perhaps this is contributing to the pain as the bulk of the tumour is at this sight.

Sunday today and he is still in a pretty bad way, nausea, sickness, hunger and pain as well as a slight temperature.

He really hopes to get some decent nutrition inside and hopes therefore to feel better, have more energy and a better dispotition. It's hard to watch him stryggle endlessly.

Our 9yr old has been quite tearful and hard work. She doesn't yet know the extent of her daddy's condition although she seems to suspect things aren't right.

On a happier note, the people at Chelsea FC have given our 6yr oll son the opportunity every boy dreams of - he will be a mascot this tue night in their UEFA match against MSK Zilina. He will be leading out the Zilina captain! He is beyond excited and shopped today for an autograph book. He gets to visit the eam in their changing room prior to the game. Husband going too - if health picks up. It's good to give them something lovely to smile about x

stent being fitted

2010-11-17T19:54:29Z

Thank you all for the wonderful words. You brought me to tears x

My husband is having a stent fitted tomorrow as long as the oesophagus is narrow enough to hold it in place. It's bitter sweet as he really doesn't want one but the thought of the possibility of being able to eat something semi solid is so desirable.

The Marsden are moving quickly which is fantastic so he will be admitted tomorrow at 7am. We told the children what was happening in the morning and they reacted so differently. Our 6yr old boy was silent and looked concerned and our 9yr old daughter was just silly. She then went upstairs to write a letter to her teacher requesting to be kept busy so she didn't have to think about it.

The thought of telling them what the future holds is heart breaking. A very dear friend gave some advice - you don't say that someone is dying, tell them they won't get better. If this type of news can be said softly then is this the way? It sounds more gentle.

My husband has been writing a blog since finding out he was ill. He is incredible and the story he writes is from the heart. Should anyone wish to read it please look at www.thebookofsilence.blogspot.com He is known as Swordfish and I'm Kitten - don't ask!!! x

the news we didn't want

2010-11-16T11:34:16Z

monday came. It was the longest day waiting for a 4.15pm appointment.

As a doctor, does it ever get easier to tell someone that the treatment hasn't worked?

Unfortunately, my husbands cancer has worsened. The existing tumours have doubled in size and are pressing against the wall of the oesophagus which itself has thickened. There are more lymph glands infected and now the liver too. All of this whilst on chemoradiotherapy. It beggers belief.

There is very little treatment available. Talk of inserting a stent asap as his eating is almost non existant.

We hope to keep the news away from the children until christmas has been. How do you tell the children? This is our weakness.

We are holding things together pretty well, always have. My wondreful husband has so much strength and determination. This is now about concentrating energies on making the most of the time we have rather than on getting better.

Its hard to pin the medics down to time but we are talking long months rather than years.

the waiting game

2010-11-11T14:14:11Z

My husband - 44 at the time - was diagnosed in february 2010 with cancer of the oesophagus. It is situated at the junction of the stomach. He is rated as T3 N1 M0. Having under gone 9 weeks chemotherapy at The Royal Marsden Sutton, he was given a date for the operation. There was an 8 weeks wait for his body to regain strength.

Unfortunately within 4 days of chemo finishing he noted that his eating had started to deteriorate. A few more tests and another meeting with the surgeon concluded with the cancellation of his op and a lengthy weeks wait whilst them- that- be decided whether or not his cancer was too aggresive to treat.

Thankfully, the call came 6 days later to say he would be given radical treatment of combined chemoradiotherapy daily for 6 weeks. There would then be a 12 weeks wait to allow radiotherapy to do its thing.

Treatment completely battered my husband and unfortunately many symptoms have returned. He had a CT scan on Monday 8th Novemeber and we go in on the 15th for the results. We don't expect miracles but we pray for the words that confirm the surgeon now believes him to be in an operable state.

Fingers crossed that our little family -- daughter of 9 and son of 6 - will be able to raise a smile for the first time in such a long time.