What I am up to

Sunday 11 October 2009

Final Chapter - update Sunday 11th October

Jo funeral was held on Friday 9th October, it was a dry day and the turn out was very good, standing room only. Thanks to everyone who came and gave their support to the family. It was a lovely service, just how Jo wanted it to be. Thanks to all family and friends for their support and help. There have been many tributes to Jo made by her friends, and I would like to thank the following people for their kind messages. Thanks for all donations made to Katharine House so far, the collection will remain open for another week:
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

As promised overspill parking has been arranged in the field adjacent to the church and pub. Entrance to the overspill car park will be in Silver Street. There will be some notices and someone will be there to park you. The field is stoney and has recently been mowed for the funeral so it should not be too bad if it is wet. There is also a gate in the field that leads into the churchyard. We are expecting alot of people so please park considerately.

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

Dress for Jo’s funeral at Jo’s request;

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

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 arrangements for Jo.
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

I am sorry to say that Jo passed away peacefully today at 1205hrs.
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

I do apologise for the long gapbut I'm near exaustion after these eight months of watch waiting, the last month has been particlarly distress especiallying since Jo's personality changes - the anger and rejection are the hardest things which are continually directed at me are particularly very difficult to understand. all the theories by the nurses and doctors do nothing to take away the pain I feel every day at being told to go away is unimaginable.

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

Bernie and I have been up to see Jo this morning, and she was fast asleep and she looked so beautiful and peaceful. The nurses say that she has been more settled today. She was in some pain, but the nurse gave her some painkillers and they seemed to help, and was probably why she was sleeping. We didn't wake her up as it seemed best to leave her to sleep, and Bernie is going to visit again later.

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

Bernie and I went to see Jo today , Jo is very quiet now the sedation helping Jo makes her very sleepy. Although it is comforting not to see Jo in an agitated state it is very upsetting to see her so tired and hardly with us.

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

Jo has gone back to the Katherine House H0spice , on Wednesday entirely of her own volition. If you intend visit her prepare your self for quite shock as her personality has totally changed and it is very difficult to think of her as the quiet calm sweet Jo that we all knew and loved.

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

Just a quick note to let everyone know that after a difficult 2 days nights, Jo has been allocated a bed back in the Katherione House Hospice. Please note that she is very poorly so I would ask that you leave the next couple of days free of visits and then ring the Hospice first to see if she is up to it before you go. KH, tel: 01295 811866.

When I have news of her condition I will update the blog.

Thursday 6 August 2009

Apologies for the gap between blogs but we have had a busy week. Jo had a good week in Katherine House and we were very pleased with the level of care that they provided. We even got a Sunday lunch together.

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

Jo has had a difficult weekend with her UTI and other symptoms associated with her tumor and this morning there was a significant down turn in her condition, so much so that we had to call our GP Jonathan Williams who confirmed our worst fears that there had a been definite change.

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


sorry for the delay , but Iwas waiting for some photos from Bob Clewley, He's just started a new Job so understandably that takes precedence.


first an update on Jo's condition. She continues to baffle the medics as she has been quite stable that is until ago when she developed a bowel disorder hence the non appearance at the Bluegrass gig on Sunday this has been compounded with a severe Urinary Tract Infection which continues to make her feel very poorly, and she feels so tired that she spends most of the day asleep.


She doesn't feel like seeing anybody so she apologizes to all who wanted to pay a visit and were disappointed, she Say's as soon as the various antibiotics start to do there job and she feels a bit better, she'd love to see all her friends again - in ones and two's.


as soon as I get some photos from the B&BG I'll update the blog.

Sunday 5 July 2009

Update Sunday 5th July


The last week has seen some baffling changes to Jo's condition, early last week she was critical and giving cause for considerable concern. But by the end of the week her symptoms had markedly improved, she was stringing longer sentences together and she got out of bed for on a couple occasions just to sit down stairs and share conversation with visitors.


She even managed to go down the road for visit a distance of 75 yds being pushed in her wheel chair. the only thing that went wrong occurred on Saturday:she had been suffering a bad water infection that became very bad so much so that we had to call the out of hours doctors service.


Her catheter had blocked an couldn't pass water for 5/6 ours she was in excruciating pain.after numerous phone calls to the District nurse at 6:40pm, some 3 hours later, and after she had changed the catheter the pain eased and she started to improve.


Sunday.


after a comfortable night , Jo is in pain again, we think a change in the antibiotics will improve things, that's considered opinion of the District Nurse who came in this morning, we have a district nurse every morning..


The GP who came to see her is surprised that her condition had improved, he may even talk to the oncologist to see if another ct scan reveals a change in the Tumor which is giving signs of shrinking, though seems great news for Jo the slight improvement in her condition is still not enough to change her quality of life very much, the prospect of being in this condition for months fills her with trepidation, she has now had enough and would like dignified exit.


Her next goal is to be able to go to the Beer & Bluegrass concert next Sunday the 12th to meet up with friends and enjoy the music and good company, we still have a few tickets left if you want to come along.

Monday 29 June 2009

Update

Jo has had a very good weekend , since the previous weekend which was very scary, she has been put on a drug cocktail that has perked her up no end, but due to her deteriorating condition she is becoming increasingly very tired so the GP and the Macmillan Nurses have asked me to limit her visitors to strictly to 4 persons in any one day, and only family on Sundays as it was all getting too much for her. so please ring in advance and I'll put you in the diary she would love to say good bye to all her friends. but at a leisurely pace that doesn't wipe her out

Thursday 25 June 2009

Change of plan

Jo has changed her mind, she now wants to stay at home right up to the end. So we have cancelled her respite week at the Kathrine House Hospice. It'll make it much harder for Jamie and I, but it's her will and we will get an enormous amont of help from the McMillan nurses.

Friday 19 June 2009

Jo condition gives cause for concern

After a very bad night Jo has got worse she woke up this morning delerious and very aggitated we called in the Macmillan nurse and he doctor, aftter examining her and talking to her they are of the opinion that Jo is fading rapidly. They contacted the paliative care consultant who prescribed different drugs, basicly to make her comforftable untill the end, whicfh could be any day now. We have a nightnurse on all night.

I'm numb I can't image life without my Jo.

Thursday 18 June 2009

Jo's condition worsens

Since Sunday Jo's has detriorated rather quickly, her speech is now totally inaudible and her movements are very unstable and she has had several falls.

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

Update Sunday 7th June 2009 - Bernie and Sarah
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

We went to the Churchill today, following Jo's MRI scan on Monday. Unfortunately today's news was not good. We were hoping that the complications of the last couple of weeks were a reaction to the radiotherapy, and would improve in time. However, it wasn't to be, and the tumor has grown, despite the radiotherapy. Sadly Jo now has a short time with us. The consultant's best estimate is 2-3 months. Meanwhile they have doubled the steroid medication in the hope of reducing the swelling from the radiotherapy and improving speech and co-ordination.

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 last bank holidy was not such a good one for Jo, we had to have the out of hours doctor to her on Saturday, and again on Sunday. The outcome of that was that she was referred to the Churchill again on Wednesday last week, where she saw the consultant. Her symptoms were longer and stronger fits and speech problems and problems with use of the right side of her body.

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

Until Thursday, Jo seemed to be making good progress after treatment, which finished 3 weeks ago. However, things have started to go wrong.

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

Jo finished her last treatment last Wednesday, 15th April, that was the largest dose of radiation that the human brain can take and left her somewhat dazed. Now we have to wait for 2 months to find out if it has worked. The treatment continues to work for another two weeks so she will feel increasingly tired and suffer the many small side effects that she has been experiencing before things start to settle down. Hopefully her speech will start to improve and she should be more steady on her feet.

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

Jo is now in her 5 th & final week of her Radiotherapy treatment, the last weeks treatment will be particularly arduous as the the dose will be increased to a very high level, this will cause her extreme tiredness as well as nausea.

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.

Sunday 15 March 2009

Latest Update - Sorry for the delay

Jo's second week of radio-therapy ended last Friday. Thanks to all the people that gave her lifts everything went very smoothly, transport wise; luckily there was no adverse weather conditions to cause any delays.

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

Jo had the first Radiotherapy treatments today, Peter & Sarah Wilson took us today which was at the Churchill Hospital in Oxford, we had to be there for 1030am, we left home at 0825 and arrived at 0930 we went via the old road to avoid a hold up on the M40 - there were no hold ups on this route - worth bearing in mind for the future lifts!.



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

When using the Google Calendar link please note that you will have to sign in. If you do not have a Google account just type in Bernie Jennings. When you have selected your preference please e-mail Mary Street and she will coordinate.

Update from Hospital Visit (16/2/09) Mask Fitting

We went to the Churchill Hopspital for an appointment to fit a mask which is necessary when under going radiation therapy. It was not a very pleasant experience for Jo as it involved dipping the mask into hot water and waiting for it to soften and then molding it to her face (didn't make an improvement). After the making of the mask she had a CT sscan in order to establish the exact points of treatment for the tumour. Which has now grown considerably since last time. It is fair to say that Jo's speech has deteriorated considerably and I have difficulty trying to understand what she is saying complicated by the fact that she can neither read nor write at all now. We have now been given the dates and times for the treatment which commences on 3/3/09. See the link to view these dates (http://www.google.com/calendar/render), this gives access to the calender. If you're able to do any of the runs please contact Mary Street on her email address (mary.street@tiscali.co.uk). If you find you can do any other runs to the Churchill let her know. She is coordinating the rota for Jo's treatment which will last for 7 weeks.

Thursday 12 February 2009

Update Jo

We took Jo to the Churchill Hospital in Oxford yesterday, it was an appointment to see the Oncologist the purpose was to discuss the treatment and to answer any questions.

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

Today is Jo's 56th Birthday and the day we get the diffinitive results and treatment plan, the appointment is at 1230 pm.

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

I brought Jo back home on Thursday evening. The hospital sent her home to await the out come of the consultants meeting on Tuesday 27th Jan - this is a panel of Neuroloigists, Neurosergeons & Oncologists who will look at all the test results and decide what treatment if any would be appropriate.

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

Thank you

I thank you all for you friendship - now I need you to be strong for Bernie

Jo xx

Very Sad NEWs 1817hrs

Jo rang me to tell me that all the results were in and the Doctors have told her that she has a High Grade Tumor and they give her one year at the most. I'm devastated that they gave her this news on her own. I must dash to be with her as the is in bits.

Buletin 1704 hrs

"Anyone seen my mum"

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

The Ward sister just rang me and has asked people not to visit tomorrow because Jo is not upto it she becomes too tired. It is bringing on mini epeleptic fits which they are concerned about. I do not intend to go tomorrow. so please check with me before visiting.

Thanking you in anticipation

Bernie

Up date Jo1914

I visited Jo this afternoon at 3pm, Jo was sitting on her bed trying to read a publishig given to her by the consultant Oncologist - "Understanding Brain tumors".

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

I visited Jo last evening with Mike & Diane, Jo was quite cheery although her speech had detoraited as a result of the brain beginning damaged thus swelling, which in turn impacted on her speech which was not as good as the day before.,she also tires very easily, sop please bear that in mind when you visit.

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

Jo's biopsy was performed on Friday last. I vis her over the weekend , the doctors were pleased with the proceedure and she rcovering fro the procedure well. The scars are tiny however the bi-opsy was a great success in terms of the material taken.

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 is sitting uo in bed and has her full colour back , her sence of humour is not diminished,she has had 2 small hole into her head. the surgeon said that it was complete success and the resultsin 7 days.

Jo Update 1104 am

Jo had a good night, last night. off to see her this afternoon,

No visiting today except familly, will update again at 1700hrs.

Friday 16 January 2009

Final bul Friday 2230 hrs.

spoke to recoverey ward, she has come round and is sitting up in bed eating toast. which is a good sign.

very limited visiting tomorrow please ring me first for an update bedfore visiting. Thankyou for all the kind words and messages.

Latest on Jo

Jo has had her bi-opsy, all went well and she is now in recovery in the neuro surgery ward.

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.

JO'S STATUS

Taken to hospital New Years Eve with a suspected stroke. New Years Day had tests and established brain tumour. Taken to JR Oxford on 7th January 09 for MRI scan. Results confirmed brain tumour. Biopsy awaited but should be done later today - 16th January 2009. Results may take 7 days.