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, 10 May 2009
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
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.
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.
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
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.
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.
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.
Subscribe to:
Posts (Atom)