Memorial service in east london

Hi everyone.

We have now had confirmation of the service at the city of london crematorium. It will be on tuesday 11th at 12.30pm. After the service we will be having refreshments. 

Russ

Donations

Hi everyone

We are asking that people make donations instead of flowers for mums funeral. She had a long service badge from st francis hospice where she used to volunteer and also where our day was going to before he died and we also want to send half the money to the exeter leukaemia fund (ELF) where she had the majority of her treatment.

Russ

Funeral details - update

The address of the Church for Mum's funeral is not shown on the Church website and Google Map cannot find it. The Church is next to Tarka Books whose address is:

5 Bear Street
Barnstaple
Devon
EX32 7BU.

The church does not have a car park but there is one just south of the church, a 2 minute walk away.

Further update:
Although she didn't specify, when it was Dads funeral she wanted to collect money for charity rather than flowers so we are planning the same.
Any money donated will be split between St. Francis Hospice (based in Havering - Mum did voluntary work there for a number of years) and Exeter Leukaemia Fund (who helped to look after Mum while she was undergoing treatment).

Funeral details

Mums Funeral in Barnstaple will be at Christ Church on Thursday 6th June, starting at 1:30pm. Her cremation will follow.
Church website:
http://www.christ-church-barnstaple.org.uk/

The service in London has not yet been arranged but is likely to be early the week after.

Sorry for lack of details

The first step after someone passes is that the Medical Cause of Death Certificate is issued. This is done on the working day after. As Mum passed on the Friday before a bank holiday it means this certificate will not be issued until Tuesday. The reason this is important is that her belongings cannot be collected until this certificate is issued, and her wishes regarding her funeral are in her notebook, in her hospital bag. Once we have this we can start making arrangements and will share with everyone.

Thank you for all the phone calls, emails, text messages, blog replies and Facebook messages people have sent to Russell, Sylvia and\or myself.

Sad news

I am sad to report that Mum passed away at 1:30pm on Friday 24th May. Sylvia, Russ and I were at her side as she left this world to join the next one.

We were told on Thursday afternoon that she wasn't responding to the heavy steroids they had given to repair her lungs and that in the last two days her blood stats had dropped like a stone. This unfortunately meant there was no chance of her recovering so the decision would be made on the Friday morning to cease the life support systems, which they did at noon.

Although it was difficult for us at the end we are grateful to have been there and that she didn't feel any pain.

In due course we will give details of what happens next but the plan is a funeral service in Barnstaple followed by a memorial service at Wanstead, east London.

I want to say a big thank you to everyone that prayed and kept her in their thoughts the last few months and weeks. It is nice to know she touched so many people's lives.

Sorry for the lack of updates recently

Last week Mum was stable so there was little to report.

Towards the end of last week Mums breathing deteriorated so she is back on full sedation with breathing taken care of by the ventilator.

On Friday/Saturday they gave her chest a CT scan, to check on the current condition of her lungs. The results are that areas of her lungs are damaged and will take a long time to repair. The reasons for the damage are a) the ventilator itself can cause some damage, b) the lung infection she had that put her in ICU and c) the transplant itself can initially damage parts of the body. All this means that she is going to be in a poor condition for months rather than days or weeks.

The fight is not over yet but it is going to be longer and harder than originally anticipated.

Russ is down until Wednesday, Sylvia will be visiting Wednesday/Thursday with her/Mums cousin Helen from New Zealand and I am planning to visit on Saturday.

If there is an update one of us will post something; next time we'll try not to leave it so long. It is good that people are so interested in how she is doing. I'm sure she would show her appreciation if she could.

Thanks again for your thoughts, wishes and love.

Stuart

Staying stable

Been an uneventful couple of days.  Mum is still on ventilation and under light sedation.  She has been ticking along showing slow signs of her chest infection going away.  Spoke to her transplant consultant who was saying here transplant is doing well.  All good vibes and fingers crossed hopefully we can make some steps in the next few days.

Russ

Bump in the road.

It has been a bit of a turn around today. Stu called me at 4.30am to let me know that mum was back in icu. She had some trouble breathing and they had given her a chest xray that showed up some more infection. When I arrived here thisafternoon they told me that one of Her lungs was half collapsed and because of this she is back on full ventilation and sedated again.
It's a bit of a full circle from the last week but hopefully she will kick this and keep getting better.

Back to ICU...

I saw Mum during Saturday. She is in much better condition than when I last saw her. However, in the euphoria of her leaving ICU I had forgotten that she is still very ill.
She needed an oxygen mask to breath and was still mumbling, making it difficult to understand what she is saying. She is also still a little confused. However her blood states are good and kidney function is much better.
@4am I was woken by the hospital - mum's breathing has deteriorated due to an infection in her lungs, but they do not know if it is a new infection or the old one has returned. They has taken her
back to ICU (Pencarrow ward this time) to give her help with her breathing - by mask at first but if not enough will need to put her properly back on the ventilator again.
Fingers crossed this is just a blip.

Off ICU!

I got a phone call from the hospital at 4 this afternoon to tell me Mum is coming off ICU this afternoon/evening and going back onto "Bracken" ward, where she was previously. This is excellent news!
I'll be going to visit her this weekend, looking forward to having a conversation with my Mum.

Thank you again to everyone for your support!

Better news

So much better today. I have just spent 2 days with Phyl, and the improvement is continuing. Today she has been awake and talking, although they are still keeping an oxygen mask on her. Her chest is improving, and the doctors are talking of moving her off ITU over the weekend, which would be wonderful. She even managed a beaker of tomato soup with my help at lunchtime. When i asked her how that made her feel, she replied 'normal'. She is finding it hard to believe that she lost 4 days while sedated and on the ventilator.She was awake enough today to ask the nurse to turn the TV on so that she could watch 'Bargain Hunt' !
All the positive thoughts must be playing their part - please keep them coming.

On the road

It has been a better day today. Mum is off the ventilator and awake.

She spoke to me today which was amazing. She's very weak and not able to keep awake for long.

It's a great step in the right direction. All fingers crossed we can keep this going.

Russ.

Still stable

At the last minute I decided to pop down to Devon to see Mum today. As mentioned by Russ and Sylvia, she is still in a stable condition. Her medication and ventilator setting having been adjusted up and down to understand how she reacts and her condition. Currently she can initiate breathing but still needs help from the ventilator to draw sufficient breath, an encouraging sign.

I spent the day holding her hand and talking to her. I hope she heard or felt some of it and that it helped break the boredom of lying still on a bed all day.

Thanks for everyone's messages, thoughts and prayers.

Keith and I went to see Phyl yesterday. No change in her general condition, but she looks really comfortable now that her breathing is being supported. All the staff seem very caring, and i know they are doing everything they can for her. Caroline also came down from Bristol  with her husband Andy . Russ will be down again tomorrow until Wednesday, when i shall be going again. Although she is sedated, I'm sure she will be aware when people are there.

3/5/13 update

Hi everyone.

Had a quick chat with the ICU nurse this morning. She said that mum had been stable overnight and into this morning.
I do have to say how amazing all of the looking after her have been. People always say that she is in the best place she can be, but with the people around her being so genuine and caring i really do have every faith in the fact that they will help her as much as they can.

Russ

Progress prior to Thursday 2nd May

Hello Everyone,

I want to give everyone the background to Mum's current situation.

17th of April Mum had a bone marrow transplant (you can read about this procedure here: http://www.nhs.uk/Conditions/Bone-marrow-transplant/Pages/How-is-it-performed.aspx).
The Tuesday afterwards (23rd) she was generally OK but it was noticed that she was mumbling when she spoke.
On Wednesday 24th I tried to contact her on her mobile but was unable to. At this stage she couldn't be well understood when she spoke and wasn't well co-ordinated enough to use her phone, although I didn't know this at the time. These are some of the symptoms of kidney failure, which was discovered around this time. It is for this reason that suddenly she has stopped contacting people as she is unable to.
Thursday and Friday she had dialysis to take over the function of her kidneys. However, at this stage her blood stats were showing good progress and the drugs they had given her had started her kidneys working again, albeit at a fraction of their normal output. On the Friday they also performed an MRI scan of her brain, CT scan of her abdomen and took a fluid sample from her lumber.
Saturday 27th April I spent most of the day with her in hospital. It was the first time I had seen her since the transplant so was shocked at first - her mumbled speech, confusion and nodding off every few minutes. However in the afternoon I noticed a steady improvement in her behaviour - she was awake all afternoon, was able to converse and watched a bit of the snooker on TV. She was even able to make the occasional joke! The MRI result was "normal", lumber fluid was OK but her CT scan showed an infection in her lungs, for which they started giving her antibiotics.
When I arrived at the hospital on Sunday morning I was ushered out of her room as soon as I arrived by the nurse; after 40 minutes I allowed back in the room. She had had an "episode" - blood pressure dropped and heart rate rocketed. She now had to breath with a mask over her mouth, any length of time with the mask off saw her blood oxygen saturation drop and she become breathless. I left her knowing her condition wasn't good but she was stable. That evening they put her back on dialysis and moved her to ICU (intensive care unit) so she could be monitored more closely. They had also performed an x-ray that showed her lung infection was getting worse.
Monday they took a sample of the mucus from her lungs to identify what it was she had, so they could give her more focused treatment. At this stage her blood stats were still improving and she was no longer neutropenic (mean she had her own immune system working).
Tuesday her breath improve sufficiently that she was able to breath without needing a mask all the time, her kidney function was still improving (although still poor) and her blood stats good.
Wednesday 1st May they knew what infection she had in her lung - PCP, a form of pneumonia (see link http://en.wikipedia.org/wiki/Pneumocystis_pneumonia). The doctors were very surprised Mum had this infection as usually the symptoms are more acute (literally being unable to breath) so had thought it was something else initially. We were warned that this is very serious. At this time they also had to increase the amount of drugs hey were giving her to cope with her confused state - she couldn't understand why she had a mask and lines so kept trying to take them off.
Which brings us to today - she needs to be put on a ventilator and be sedated. The reasons for this is the effort required to breath herself is becoming too great. If it were to continue she might stop breathing due to her body being too tired to. We were also told some of the drugs needed will make her blood stats worse but fighting the infection is the priority.

Whenever there is a change in her condition Russ or I will try to update this blog within 24hrs so everyone knows the latest situation. If there is no change we will probably post something every two to three days.

Please everyone cross your fingers/pray/send positive vibes. I don't want her to fade away like my father did 21 year ago...

thursday 2-5-13

Hi all

I received a phone call from the ICU consultant that mum has been moved onto a normal respirator and is going to sedated to help her breath.
We are hoping that this is just a small setback but as always it is a serious situation.

Russ

First post

This blog has been setup to keep everyone informed of Phyllis Clark's (Mum's) condition while she is in hospital.
Currently people are being phoned, emailed, messengered etc. at different times, by different people with different information.
This will be central source of information so everyone can be up to speed with Phyl's condition.
First details are planned to be posted tomorrow.