Friday 28th November 2008 - Details.

09:30 - CANFORD CREMATORIUM, CANFORD LANE, BRISTOL BS9 3PQ.

- All welcome -

10:15 - Off to Memorial Woodlands : http://www.memorialwoodlands.com/contactus.php

11:00 - Reception. Tea & Coffee with friends and family.

11:30 - Celebration of Sheilas life in the Woodlands chapel.

Music, hymns, readings and speeches, nothing too formal.

If want to prepare a short speech, or recount a story, then go for it.

I know black is the traditional dress colour, but I'm sure she would

prefer you to wear something a little brighter for today.

If you have any nice photographs of Sheila bring them along.

After ceremony there will be food & refreshments at the Reception rooms.

14:00 - (ish) - Walk to memorial plot and lay her ashes to rest.

15:00 - (ish) - Back to reception, finish off food & drink (if any left :).

There is a good chance some people will go to the Royal (pub) in Portishead for a drink in the evening, everybody welcome.


Family flowers only please , Sheila would want you to donate to one of her favourite charities, these were (in no particular order) :
St Peters hospice,
Holly Hedge Animal sanctuary,
Cancer Research UK,
Cats Protection.

See you Friday.

ps. it would be good to have a rough idea of numbers, so if you are planning to attend Woodlands please let me know by email (my address or sheilas).

Details & a thank you.

I would just like to say thanks for all the cards , messages & TXT's i have received. I have been overwhelmed with your support, and it is certainly helping me get through this very sad chapter in my life. Here is one of my favourite pics of Sheila along side her brother, taken at our wedding (i wish i had the sound byte :)

Put Friday 28th in your diaries, final times still to be confirmed, but here is the rough plan:

09:30 - CANFORD CREMATORIUM, CANFORD LANE, BRISTOL BS9 3PQ

- Feel free to attend, but i guess we would prefer to see you later.

Off to Woodlands : http://www.memorialwoodlands.com/contactus.php

11:30 (ish) - Woodlands-reception. Hopefully have informal gathering with friends and family.

13:00 (ish) - Ceremony in Woodlands chapel. At this stage there will be some readings and again, nothing too formal. So if want to prepare a short speech, or recount a story, then go for it.

15:00 (ish) - walk to memorial plot and lay her ashes to rest.

16:00 (ish) - Back to reception.

This is a rough plan, the only definite time at this stage is the crematorium, I will update times as I get them confirmed.

I know that rather than buy flowers, Sheila would want you to contribute something to her favourite charities, these were (in no particular order) :

St Peters hospice, Holly Hedge Animal sanctuary, Cancer Research UK, Cats Protection.

Thanks again to you all.

ps. it would be good to have a rough idea of numbers, so if you are planning to attend Woodlands please let me know asap by email (my address or sheilas).

Sad news.

There is no easy way to deliver bad news, so here goes.
After putting up a damm good fight with cancer, Sheila passed away peacefully in her sleep this morning at the Royal Marsden hospital - Chevallier ward. A combination of the cancer and the drugs she was on meant her kidneys were working overtime and eventually failed. We hoped she would recover, but it was too much to ask. She was pain free, and was in a very deep sleep, so it was a good way to go. Although we were a long way from home she has been surrounded by family and close friends all week, so she knew she was loved. A lot of the staff from the trial ward came through to check on her progress, and wish her luck, thats how popular she was. No one could have predicted how things would turn out, or how dramatically they would spiral downwards. But at least it was relatively quick for her.
I am still struggling to come to terms with what has happened, but I know she would want me to pick up the pieces and carry on. Soon as I sort things out I will publish details on Blog for her send off. Wish me luck. Frank.

St Helier

Saturday on our way to St Heliers in Carshalton, they finally have a bed. Sheilas family on way and will meet us there. Sheila pleased to see them, but very dis orientated. Due to the renal problems.

We have to wait several hours for doctor to examine Sheila & take Ultrasound scan of abdomen. Registrar on his way. Doc also suspects a mild lung infection, so anti biotics ordered. Bad news, but expected, is, that the scan shows right hand kidney, is no good, probably packed up a while back. The left hand looks fine, no blockage, so no need for operation. But for some reason it has given up. Possibly had to work too hard on its own.
Could be another infection, so more anti biotics (renal) on order.
Only options now is to administer these and pray kidney recovers.
Nurses take various tests, and work out how best to get Sheilas bloods and levels back on track.She sleeps for most of afternoon and evening.
various infusions and painkillers administered.
Woke for a short time during early hours. so something happening.
What can I say. We will have to wait and see. Please pray to your god.
Thanks. bye for now.

A long, long night....Friday continued..

Docs do what they can, an we arrange a room in Chevallier ward. Sheila looking very worn out now, hopefully bloods will boost her. 1st bag down. Docs reckon kidney failing because her bladder is blocked, and decide to insert a catheter, to help, with partial success. Docs liaise with St Helier (local hospital with renal & kidney specialist). They will try and get her in tonight, but beds are at a premium. Very heavy conversation about kidney ops ensues, especially the dangers in Sheilas condition :(
After 20:00 we transfer to Chevallier ward, have our own private room, en suite, flat screen TV (Corrie & Eastenders on). I nip down to VW and bring back a bottle of Port, Sheila well happy. But towards end of night, she gets very very drowsy. Starts having waking dreams. Nurses try to flush catheter/bladder out, but without much success. At around 03:00 saturday, duty doctor gets summoned to check catheter . She is not too happy and decides to remove and insert new one. This is a success, and without going into too much gory detail, lots of stuff comes out. To my surprise, Sheila sleeps through whole episode!!! This aint normal. But doc says at least she didnt feel any discomfort. After short while nurse comes in for obs, sheila 'sleeps' through this aswell. By this time i voice my concerns to nurses. We try and wake her up, no luck. Shouting, rubbing, shaking, she doesnt come round. Night doctor gets called, lots of discussions, possible stroke, senior doc gets paged, on way in. We try all sorts to wake her, reflex is poor, pupils not dilating. We fear the worst. Senior docs fears worst too. Head scan discussed, possible DVT problem. Trial co-ordinator is informed. By this time I am bricking it. Its 05:00 ish, she is still not responding. I call her brother, leave messages. this is serious. Things looking very dire. Then docs decide to try one last thing, an injection to counter the morphine based pain killers that are in her system. Injection goes in, after 10 secs she awakens with 8 very worried people standing over her, and she says "whats up with you lot, what you staring at". panic over. AAAAAAAAAAAAAARRRRRRRRRRGGGGGGGGGHHHHHH.....

Nurse offers to ring David (sheilas bro) to put him in the picture. (I go off to change my pants :/ I'll kill her if she does that to me again :)

Find out later that because her kidney/s arent on full flow, the drugs just circulate round body and she basically O/D'd. David calls in, on his way to visit, with mum & dad. Good.

St Helier hospital confirm bed. Transport to be arranged. Sheila nicely relaxed, but seems to be getting confused on whats happening around her. Nurse says side affect of kidney problems dont worry. Wait for transport

From bad to worse....

Hi all, this is Frank on his dongle. This week started out promising, but has ended up very dire. We got back late Tuesday, a little shell shocked, to say the least, Sheila was not her usual self, more tired than usual, and I put this down to the long two days at Marsden. Wednesday she mentioned that she was passing a lot more blood with her urine, and we put this down to the chemo & Clexane. She wasnt too concerned as we were scheduled back up to Marsden on Friday, for blood check and probably more transfusions. We decided to stop the Clexane injections, as a precaution, we would ring Oak ward to confirm, but we never did.Thursday afternoon we set off for AbbeyWood, normal sites were either fully booked or had water mains problems. Long long journey. Got to site late, had supper and I finished updating her blog, she was really flaked out. Got to Marsden mid day Friday, ususal routine, bloods were taken, urine sample etc. Results came back within the hour, sheilas Hb count down to 7.4, two units ordered. When doc saw her urine sample, he looked concerned, it was red! Full examanition followed, more bloods. Chest X-ray & ultrasound for kidneys scheduled. Results came back, possible chest infection, but what really frightened us was "accute renal failure". Docs put us at ease, saying it was possible the blood clotting in the bladder, causing blockage in kidneys. not to worry.Oak ward closed at 20:00, but if need be we could use the ward next door. Called the Chevallier ward, it was 24/7.

It's not good news

You should never try and second guess these things, we thought everything was going well, legs shrunk down, circulation improving, foot wounds healing......we were fairly confident Reo virus was doing it's stuff.

This week we went up for the Monday appointment to check the bloods and to get the scheduled CT scan & heart ultrasound (trial protocol). Unfortunately the blood results came back and showed I needed a transfusion, so we had to stay another night. On Tuesday morning we started the transfusion. After a time Martyn the doctor came in (closed the door behind him for privacy, which is not a good sign) and said they had reviewed the scan from Monday and the disease was still active. The pelvic tumour hadn't progressed, but because my bloods and liver were getting a hammering, they felt there was no point in continuing the trial, another blow was that the scan showed some small lesions on my liver, they werent noticed on initial baseline scan, but they werent looking for them. Not good news.

So they have taken me off the trial, and now I have to take a decision about whether I take a chance with another trial or go away and concentrate on getting symptom control ie palliative care and getting on with the rest of my life & live with it. They want to know what we decide next. The doc said they are happy to find me another trial (no guarantee of getting accepted though), but we really need to consider wether I want to spend all my time travelling to the Marsden and getting pumped full of trial drugs, or getting on with the rest of my life...

will let you know what I decide. As alway telling family and friends not something we look foward to.

ps. frank finished editing this post for me on the dongle, camping in Abbey wood & published it, because I crashed out... chilling :)

Day 8 Success

We went to the Marsden on Monday and much to our astonishment my bloods were OK and we were able to proceed with the Day 8 treatment. This consisted of a 30 minute infusion of a drug called Gemcitobine, a fully licensed chemo drug. Again it has come out in my legs, so it looks like the Gem and not the Virus is causing the redness below my knees, something to report back on Monday. We are therefore blessed with the rest of the week off, pity it's so cold!!!!!!!!!!

On Monday we are scheduled to go again for monitoring and the all important CT scan, so fingers crossed it is doing something. In myself my legs have reduced in size and I think the circulation has improved a bit. Today's visit to the Nurse (previous visit was on Monday) for my foot wounds showed a big improvement in the heel and progress with the healing of the ulcer on the top of the foot, so I'm really pleased with that, hopefully we have turned a corner. The dressing will still require changing every other day at the moment.

So we are enjoying a bit of chill out time, catching up on some chores at home, nothing too strenuous though.

I'm hoping to have some more photos for you soon, my technician is working on it :-)

Meanwhile Frank had to have a blood test this morning, he was like a baby, man pain is such a sad thing isn't it? You can imagine how much sympathy he got from me :-)

Speak soon after Monday,
Sheila x

Quiet and boring

The rest of the stay was quiet and pretty boring, you can't have it both ways. I was allowed to sleep through the nights with no interruptions. One night the fire alarm went off and I thought how am I going to get out of here, the ward is on the 3rd floor, but it was a false alarm and we all settled back down again. The only other reaction I have experienced again is the redness in my legs, it looks like I am wearing knee-high red socks. The left leg is worse than the right. Last month they put it down to the antibiotics I was taking for my foot wound, but this month there was no choice but to attribute it to the virus. They can't explain, it doesn't hurt as such, the shins are tender to touch, but otherwise fine. My skin below my knees replenished during the week, Frank was calling me a lizard, maybe that is connected, we will see at the next dose. My leg wound is improving but it will be a very slow process, I am now mixing appointments between the District Nurses at weekends and the Surgery during the week as I can get there with Frank's help.

Glad to be home now, yet strange being out of that room, but I know which I prefer. Think that's everything for now. We return to London on Tuesday for Day 8, the treatment I missed last month due to my bloods, so watch this space.

Sheila x