Sunday, 11 October 2009
Final Chapter - update Sunday 11th October
Elaine, John, Kirsten, Shirley, Mark & Deborah (Barn Farm Plants), Dogs for the Disabled, Leslie Sharp, Elma & Paul Hancock, Jean & Fred, Iris & Harry, Tony & Sue, Maggie & John Davies, Kim, Jerry, Norman, Kathy, PD Exercise Group, Carol Mills, Claire & Vic Fannon, Pete & Chris, Martin Hole, Carole, Trevor Twinham, Pat Drennan & Denise Buckeldee, Frankie Thomas, Mick & Carol Clayton, Jo Clewley, Linda & Roy Deakin, David Raby, Alan & Wendy Woodward, David Gill Morgan, Maurice & Rita Humphries, Tony & Jenny Orchard, Bernard & Joan Knat, Karen of Greigcare, Mike & Kay O'Meara, Margaret & Paul Messer, Eric & Jenny Clowes, Steph Gordon, Ann Lyons, Tony & Sally Mansell, Pauline & Gareth Joyner, Nicola & Neil from Cinnamon Trust, Mick & Rose Steel, Ann, & Carl Edwards and Jim Lloyd, Jonathan & Jane Meredith, Cinnamon Trust, Michael & Moyra Alcock, Paul & Sarah Knight, Deborah & Ashley Gurr, Sarah Edwards, Mike & Diane Fitchett, Diana Stephens, Sue Lawrie, Mary & Phil Street, Staff at Banbury County Court, Colleagues at Charter Community Housing, Peter & Ann Jackman, all Members of Banbury & District Dog Training Club, Lesley, Sheila & Adrian Mound, Steve & Mark, SMH Gas Specialists, Sue Howlett, Jo Cox, Colin & Joyce Smith, Alan & Betty Holder, Anne & Trevor Shepherd, Brian & Pip Hunt, Pat Sunderland, Claire, Chris & Chay, Paul & Sue Gibbons, Peter & Fiona Bays, Rachel & Andrew, Dr Debbie Neville, Paul & Sally, Bob & Chris Sturgess, Jackie & Patrick Light, Dennis & Jean Swaysland, Kathy, Tony & Hannah, Frank & Jan, Mike & Karen Wilmshurst, Linda & David Godfrey, Judi, Doris (from Longtown), Wendy & Malcolm Whyatt, Kevin Collins, Janet Cox, Ray & Joyce Hughes, Ian Swaysland, Bob & Jane Burson, Jean & John Tompkins, Lynn & Colin.
Saturday, 3 October 2009
Update 3rd October - Funeral Arrangements
Jo is now in the Chapel of Rest at Humphries in Albert Street, visiting during office hours in unrestricted. Those wishing to visit out of office hours should ring 01295 265424 to make an appointment. There is a collection with Humphries for Katharine House, in accordance with Jo's wishes, and particularly because of the wonderful care she received whilst at the hospice. Jo wanted a collection for the hospice instead of flowers.
Many thanks, Bernie
Monday, 28 September 2009
Funeral details
Ladies, no black or black with some colour
Gentlemen, don’t feel you have to wear black as with the ladies black with some colour would be good.
Again at Jo’s request no flowers, donations to Katherine House Hospice via J & M Humphries, 32 Albert St Banbury OX16 5DG
tel:-01295 265424
Overspill parking will be confirmed in the next couple of days.
There is a DVD of Jo’s live being put together. There will be some discrete photography by Wendy Wyatt at the funeral at the families request.
GUEST BLOGGER - SARAH EDWARDS - TO JO JO
I like you because of this and that......because of what you don't and do
but most because of who you are.....through and through
When there is a chance of happiness (or ice cream) in the air....
you say "yes! Let's go for it". As if "yes" were the most natural of words
I like you because you are yes-y and brave
and because, left up to my own devices, I can be a big chicken about life
"Yes, you can" you always say..............
You help me to balance life, and I help you to do the same
When hard rain falls, I hold an umbrella for you
and when the future gets foggy, you hold hopeful signs for me
We're friends, and I like you yesterday, today, and tomorrow too
Some days we act shady in the shade
and other days, we open up in the sun
Most days, we just go on and on.......
Sometimes, we dress up in dressy clothes and dangerous shoes
and go out with disastrous men in cowboy boots and seersucker suits
and, although we don't say anything bad at the time............
afterwards, we laugh very hard about our worst dates and bad mistakes!
I like being friends with you when the rain pitter-patters the roof
and when the daffodils pop
I like being friends with you when the snow is good for making snowballs,
and we make piles to hide behind and throw at Millie the dog when she walks by......
But sometimes I just like to be alone,
and that's OK because you like to be alone too
But then we always get bored and you come and knock on my door and say
"come out, come out, wherever you are..........."
and I like that too
Sometimes I feel grumpy and ugly, and then we go out shopping for silly hats
because silliness is a lifesaver
You help me forget about myself and remember the bigger picture
Sometimes we like to chum around in boats
Well, I like that more than you do, but you come along for the ride
(even though I ask you to carry the bait)
and even though you don't like water so much "Yuck" you say "yuck" "Yuck"
But you come anyway
and later, I go on the ferris wheel with you.......even though I don't like heights
not one little bit at all
and after, we both feel stretched thin
"Whew!!" we say, being friends can be tiring
Sometimes we don't see each other for a long, long time
I'm on the island of leave me alone, and you're in the city of work work work
or one of us is lost in the city of so-in-love
But I know that if I had a sad something happen to me you would zoom to my side
and you would make a nice cup of tea and we would sip-sip all hokey-yokey like little old ladies
and you would say "uh-huh...........ummmmmmmm, I know, I know....." sort of words
that would fall all around me like rain on a lake
because you understand how peaceful rain on a lake sounds
and, if you ever fell into a big hole, you know I wouldn't say "that's that!" and walk away
NO WAY
I would climb down to help you even if there was only a rope ladder (I don't like rope ladders)
and I would help you up
Everyone knows you can't leave a friend in a big hole
and I know that if I ever got lost at sea, you would look for me
even though the ocean is big, you would say "you are not as lost as you think you are"
and you would be right
But being friends with you isn't all peaches and cream
There are days I truly dislike your ways, and the way you truffle into your snuffles
Sometimes you think I'm not so sporty either
Then I think, who needs friends anyway? I don't have the time or energy for that stuff.....
Hmm, hmm, hm.......I think, life is so peaceful, but peaceful isn't all it's cracked up to be
Alot of things suddenly seem out of balance, and the world seems somehow harder
and after a while it begins to make no sense at all
Sometimes we talk and talk to make it all OK again, or you bump into me in the cereal aisle
and we say "hi-hi", I missed you boo-hoo and it all melts away to nothing
Because friendship is bigger than everything
and we say "let's not lose touch again!" and we nod, but we don't really mean it, because we're just us (not some icky-perfect-goody-two-shoes people who smile all the time and never get mad) - we have flaws and fizzles and foibles - we're friends
I like your true (and kooky) colours - you like my big and moody heart
I like you when we act like kids on the swings
and you like me when we're wicked as witches on Halloween
and we'll be friends until the end of always..................
because liking is a thing that grows and grows (even through the hard parts)
(by Sandy Gingras)
Saturday, 26 September 2009
Jo's arranements 25th Sept
the funeral directors are J & M Humphris, 32 Albert St Banbury OX16 5DG tel:-01295 265424
Jo will be taken from the Katherine House on Tuesday the 29 th September and she will be in the chapel of rest for visits by appointment, from Wednesday until the 8th Oct.
The Funeral will take place on Friday the 9th of October at Chacombe Church at 2pm and there after at the Banbury Crematorium Southam rd. (for family and close friends).
Parking in and around Chacombe church is very limited there is some parking in the car park behind the G&D pub gut make sure you buy a drink ,I'm anticipating a very large turn out so I am negotiating extra parking in the adjacent field to the pub. I will let you know as soon as possible if thats ok.
Friday, 25 September 2009
The saddest day of my life
She will be sadly missed by all her family, friends and colleagues whose help and support has been of enormous comfort over the last few months.
Once arrangements are comfirmed I'll post the details.
We welcome all who wish to join the family in celebrating Jo's life.
Sunday, 13 September 2009
Update Sunday 13th Sept
Jo was administered the last Rites on Thursday she was awake and she did her best to participate. and now she has been moved to a room on her on her own - so that her temper tantrums directed at the Doctor and nurses didn't upset the the patience.
I asked the doctor what her best guess was and she said weeks not days, that was 3 weeks ago. the longer she lasts the more pain she suffers and the more agitated she gets. I've given up predicting, I just pray that the end comes sooner than later to give her a happy release. she has been suffering to long. if you go to visit just go in and go right to the end of the Hospice she is in a room behind the ward clerk's desk.
If when you have paid a visit you can post a guest blog it will update and give a different slant on the situation thus making it easier for me.
Monday, 31 August 2009
Guest Blogger Sarah Edwards
Millie and Jess have been in to see her, and were very excited to see their mum. Jo gave them a cuddle. They miss her and are on constant watch for her to come home.
Sunday, 30 August 2009
Guest Blogger Deborah Gurr
Jo has complained of some pain in the last day or so, not severe and she is having painkillers to help.
Doctors have now said that it is a matter of weeks now.
If you do visit do not be alarmed that JO might not be very aware of who you are or that you are there.
Thursday, 20 August 2009
up date Jo
The Jo we see no is very angry and a bit aggressive , please don't take any thing she says to heart as she does not know what she is saying to you. It is very distressing to sit with her he hospice is trying very hard to get to the root of this new phase. another up date in a few days
Tuesday, 18 August 2009
Up-date Tuesday 18th August
When I have news of her condition I will update the blog.
Thursday, 6 August 2009
Jo came out of Katherine House on Tuesday afternoon and is now at home with us all once again. Her condition has stabalised but she is still suffering with a UTI which can sometimes be quite uncomfortable for her.
Jo is very glad to be home but is still readjusting after having spent over a week away. We are also still getting back into routine. The carers are now coming to see Jo four times a day which gives her more confidence and takes a lot of pressure off of us.
Whilst Jo is looking forward to seeing people she is using this week to get back into routine and adjust to being at home again. If you wish to visit please telephone to arrange a time with us.
Monday, 27 July 2009
Latest news on Jo
He has arranged for Jo to go admitted to the Katherine House Hospice ASAP - I've just been informed that it will be tomorrow morning. I hope that she lasts that long I'm uncertain what tomorrow will bring.
I'm don't know what the visiting arrangements at the Hospice so I suggest people ring and check as Jo's condition will determine if she can have visitors. K.H.H. tel .01295 811866.
Saturday, 18 July 2009
Short up date
Sunday, 5 July 2009
Update Sunday 5th July
Monday, 29 June 2009
Update
Thursday, 25 June 2009
Change of plan
Friday, 19 June 2009
Jo condition gives cause for concern
I'm numb I can't image life without my Jo.
Thursday, 18 June 2009
Jo's condition worsens
she sleeps alot now which is a sign of the start of the final phase. And her personality has chaged . we all remember her as a soft spoken and chatty person, who allways wore a smile, now she is increasingly withdrawn and she sits for most of the day gazing out at the garden and rocking back and forth in her favourite chair, it is heart breaking to watch.
The dogs are very aware and they no longer spend as much time sitting with her favourite"Millie" our black lab allways used to sit with on her head on Jo's lap: now she goes into her bed something she's never done.
Jo goes into the Kathrine House Hospice a week Friday. I'm afraid that she will not come out.
The beer and bluegrass will still be going ahead regardless - this is Jo's wish, for those of you left that have not bought tickets or know nothing of the event, go to www.beerandbluegrass.co.uk the tickets are going fast so have a look, it's unlikely that Jo will be around for it so we will make it a memorial event.
I'm finishing now as the sleepless nights are begining to take there toll.
Sunday, 7 June 2009
Jo had her last assessment at the Churchill and was given the bad news, things have steady progressed especially her stability and use of her right hand, which is now practically disfunctional.
They have upped her medication in the hope of improving her speech, however, the difference is insignificant. The MacMillan nurses come in regularly and are excellent. We have found their service valuable, and we are very grateful for their help.
Jo has got a respite week at the Katharine House Hospice beginning Friday 26th June to Friday 3rd July, and plans are being made for Bernie to go with her. Both Bernie and Jo would love to see you whilst they are at Katharine House, but it might be an idea to ring the hospice to check visiting times and whether it's OK.
This is Sarah - the MacMillan Nurse advises that she feels it is better that Jo has only up to 3 visitors a day, as she is getting very tired. The effort she has to put into speaking is really exhausting, so please could you ring Bernie first if you are intending to visit, just to check that she's up to it. She is still really keen to see you all, but we just have to be a bit careful. We have a laugh trying to understand each other, and a few good games of charades have come out of it!!!
She's a brave woman and I admire her so much for her courage and determination, and still insists on being as independent as ever. Her dogs, Jessie and Milly are protecting her and giving her constant happiness. She was pottering about in the garden last weekend and the garden looks beautiful as ever. Her appetite has improved since the increase in medication, and it's good to see her eating - her jeans are slipping off her!!
Continued thanks to the dog walkers, and all those who have been helping to keep the house in order, and Ashley and Debs for helping Bernie start to clear the garage, no mean feat I can tell you!!! Bernie tells me that he's sure his collection of wood, rivets and golf balls will come in handy one day!! I think if everyone that visits sneaks a couple of golf balls into their pockets then we should have cleared them by Christmas.
We will keep you posted - watch this space
Bernie & Sarah xx
Wednesday, 20 May 2009
Update from meeting with doctor re scan Monday
Obviously, this is devastating news, and we need a bit of time to let it sink in. We will update the blogg weekly.
Bernie
Sunday, 10 May 2009
The consultant considers these rather nasty symptoms were quite normal considering the amount of radiology she has received. Originally they did not expect anything to start improving for a couple of weeks more, however, they agreed to give her another CT scan and thereafter make a decision if the tumour has grown. This should happen next week.
Meanwhile this weekend has been fraut as the symptoms continue to worsen, insomuch as she is unintelligble and she has lost the use of her right hand, coupled with the inability to read or write properly sheer frustration.
Last Thursday she had her first trip to Katharine House Hospice for physio and massage, which she enjoyed.
We are also grateful for volunteers belonging to the Cinnamon Trust who have added to the dog walking rota run by Stephanie.
We are happy with the improvement of the weather which allows Jo to get out in the garden a bit more.
I celebrated my 65th birthday last Tuesday at the hospital, it's one birthday that I want to forget. I was hoping that my dis-allowing my birthday means that I can remain at 64!
Bernie
Sunday, 3 May 2009
Sunday 3rd May 2009 Update
She is experiencing fits and her speech has deteriorated in so much that today it is difficult to understand what she is saying. The doctor and MacMillian Nurse saw her on Friday and they are of the opinion that the treatment has not worked and that the tumour continues to grow regardless.
This obviously is not good news, so the GP is going to review her on Tuesday, with the intention of sending her to see the specialist again earlier than 27th May, which was the date the hospital had given her.
I will post a further update on Wednesday.
Bernie
Sunday, 19 April 2009
Update - End of treatment Sunday 19th April '09
Even though the daily trips to the Churchill were a pain, Jo says she found it a relief to get out of the house and to have someone different to talk to every day. She has lost her appetite and survives on weetabix, cornflakes and tomato sandwiches, and Bernie is not allowed to eat anything spicy within 500 yards of her because it makes her feel sick!!
A special thanks to all the drivers who took time off work and out of their day to take Jo to the Churchill every day.
This is Sarah Edwards typing for Bernie, I came over today and took Jo for a bit of retail therapy. Bernie said he didn't mind how much she spent, so we went straight down to M&S, where Jo bought a lovely green skirt and a beige top, and we had a good look around for bargains. Then we went food shopping in M&S and stocked Bernie's food supplies up for the week, including the wonderful blueberry puffs. Jo and I had a snooze in her summer house at the end of the garden, and I got sunburnt!! We had a good laugh about one thing and another, and I've caught her up on all the gossip.
The "team" of dog walkers are continuing to do a great job, and both Jo and Bernie are so grateful for their continued support. Now that the better weather is coming, Jo has been doing a bit of gardening, so if you're going to a garden centre she would love to join you. She finds it hard not being able to just jump in her car and go.
Date for the diary - Sunday 12th July (provisionally), we are hoping to organise a beer and blue grass festival in aid of Katherine House. What this space for further news......................
Jo's next appointment at the Churchill will be in approximately 2 months time. I will continue to make entries on this blog from time to time. Keep adding your comments to the blog as both Jo and I enjoy hearing from you.
Sunday, 5 April 2009
Update 5 April
She will become more unsteady on her feet. She will then have to wait for two months before the give her an MRI to see if the treatment has been successful and stopped the Tumor from growing.
If it is successful she may expect another 12 -18 months.
last Tuesday she got her new wig it is blond and it is really good and makes her look more like her old self. The sunny weather has been a boon allowing her to indulge one of her passinons - gardening, she says that its totally absorbing and she can briefly forget all her worries for a while.
We are looking forward to Easter and Jamie coming home for a few days. This week has been particularly busy with Peter Wilson lining & insulting the summer house to make it cooler in the summer and warmer in winter he has toiled very hard and is doing a fantastic job, it may become a comfortable place for me and the dogs.
I have to congratulate Mary Street in the grand job she has made of organising the 6 weeks lifts for Jo's daily treatment which have run very smoothly not forgeting all the drivers who have given up their time to make it happen, if we had to use hospital transport she would be comming home at 4/5 pm. and not 1130 am as she has been doing.
Some of us think that her speech has been better this week, Ii hope we are right and that it contiues to get better.
I will post another update next Tuesday.
Tuesday, 17 March 2009
Sunday, 15 March 2009
Latest Update - Sorry for the delay
Last Tuesday she had a Consultants review for the purpose of checking out any worsening side effects, so far she has only experienced a few minor fits which are now under control with medication. She also feels very tired after her treatment, luckily she has not suffered any hair loss as yet though this is predicted by the third week. As expected the most significant side effect is loss of speech which was predicted but is difficult to come to terms with. She is unable to hold a conversation at all neither is she able to read or write which causes her great distress, we are hoping that this might improve at the end of the treatment but could get worse leaving her unable to communicate at all. She has a speech therapist who is working with her to help ease this problem.
Please bear in mind when visiting Jo you need to be aware of her worsening communication difficulties,
Jo will be receiving weekly reviews of her treatment every Tuesday. Many thanks for your continued support both for the lifts and dog walkers.
Tuesday, 3 March 2009
First Treatment
She was called in at 0940; the initialappointment was a little longer as there was some paper work to complete and the positioning of the laser markers. The treatment lasted 15mins and we were back in Banbury by 1230 pm.
The treatment will last for six weeks, 5 days a week, the sideffects are severe fatigue,hairloss and nausea plus the speech loss will worsen as will the headaches and general instability.
A check will be done weekly to see if the treatment is shrinking the tumor and to check how the side effects are affecting her. for the first 3-4 weeks she is likely to feel worse, but should improve after 6 weeks.
This period is going to be a very difficult time in our lives, I don't know how she is coping with the uncertainty of it all, it is not easy to try to focus on the positives when your unsure of the outcome.
As for me the whole thing scares the shit out of me and I am very fearful of the next few months, I can only pray for the right outcome.
Contd.
Tuesday, 17 February 2009
Calendar Instructions
Update from Hospital Visit (16/2/09) Mask Fitting
Thursday, 12 February 2009
Update Jo
The treatment will be radiotherapy and it will last for six weeks, she will loose some of her hair and after two weeks she will start feeling extremely tired with flu like symptoms, it will take at least another 6 weeks untill she starts to feel any improvement.
They say that there will only one go at the treatment as the brain can only take the one dose safetly.
The next appointment will be on Monday, again at the Churchill to make a head mask to hold her head still during the treatment.
Saturday, 7 February 2009
Jo in The Snow. 12.38 Sat 7 Feb
After coming out of hospital on the 22ND Feb, Jo was feeling quite good, she manages to clear out and light the fire every day, and went to Tesco's with Jo Clewley last Wednesday - can't keep her away from the place. Although she really wishes she could walk the dogs, but they are OK as they get taken out every day by members of the Dog Club that she belongs to.
Our thanks to Stephanie Gordon who runs the roster and to all the intrepid members who have braved the weather to walk the dogs every day.
However, over the last week Jo has many head aches , and her speech has got a lot worse, she has started to get two or three seizures a day which seem to get longer each time; as the Tumour continues to get bigger these symptoms will worsen, so the sooner she starts the Radiotherapy the better, (scheduled for first week of March) every week day for six weeks at the Churchill in Oxford.
Each treatment lasts for 15 mins and they will be in the Morning between 10.30 a.m. and 12p.m.if any one would be so kind as to offer lifts we would be grateful as if she has to take the hospital transport it would be a 4/5 hour experience instead of 1 hour 45 mins. As the treatment progress she will become intensely tired.
I will post a treatment plan on the blog after we've been to the meeting with the Oncologist on Tuesday, so if you can spare a day you can just put your name in the box for that day, numerous kind souls have already pledged lifts for which we are grateful.
I will update again after the meeting with the Oncologist on Tuesday. Meanwhile Jo wishes go thank everyone for their get-well & birthday cards she received last week.
Wednesday, 28 January 2009
Some Good News for a change, 1531 hrs. 28th
We had the meeting as planned with the oncology nursing specialist and the Neurosurgeon,
and the good news is the Doctor told us that Jo can look forward to a year to 18 months.
She will now undergo Radio therapy which lasts 6 weeks, with another 6 weeks to recover which may even extend her life a bit longer
The Tumour is the size of a Golf ball. and it is considered inoperable
Saturday, 24 January 2009
Jo Update 1100am Sat. 24th
Radiography seems the first choicebut they are'nt convinced that it wouldexdend her lif by much. jo herself feels that the symptoms are begining race away and she thinks that it may be sooner than later.
If you would like to visit Jo please give me a ring first as she tires very easily. I know she would like to see you all at some stage.
Wednesday, 21 January 2009
Very Sad NEWs 1817hrs
Buletin 1704 hrs
No visits - I spoke to Jo on the phone late morning, she had had the doctors round the nreurologist said that provided the wound was sufficiently healed she may be able to go home on Saturday as long as she took things realy steady. And there after she could go back to the Horton to await the more intricate test results.
I'll phone again this evening for more of an update.
Tuesday, 20 January 2009
Jo special request 2115hrs
Thanking you in anticipation
Bernie
Up date Jo1914
The results now have been put back to next Tuesday so the agonising goes on apparently there will be a meeting of all the experts on Tuesday who decide what is to be done, the oncologist told Jo that the biggest majority of brain tumors are never removed.
Jo's condition as at 17.30 pm Monday 18th
She is showing some anxiety for Friday which is the day that she will get the preliminary results. The complete results won't be known till 10 days time.
If you wasn't to know what to take her when you visit she loves fresh cherries.
for those of you that would like to ring Jo she is on patient line he calls are £0.35 ppm off peak 7 £048ppm peak time her number is 07022543055.
Monday, 19 January 2009
Buletin Jo 1204 hrs
We will have to wait now for the results in 7 - 10 days.
she' a git teary but that's down to the general anesthetic
I'll go again today at 3.30pm
Saturday, 17 January 2009
\\\\\\\\\\jo update 2200hrs.
Jo Update 1104 am
No visiting today except familly, will update again at 1700hrs.
Friday, 16 January 2009
Final bul Friday 2230 hrs.
very limited visiting tomorrow please ring me first for an update bedfore visiting. Thankyou for all the kind words and messages.
Latest on Jo
She is not allowed visitors tonight. I will be ringing later on this evening to see how she is and will post another update later on this evening.