Jean Rabone and bowel cancer
If you are suffering from a similar condition to Jean you may find these notes helpful click here bcnotes
|Hi to all
friends and family, hopefully at some time Jean will contribute to this or
some other page herself, but as I am conscious of the fact that you are all
concerned about Jean I have created this web page. I doubt that I will
update it daily but please pop back occasionally for news on her progress.
Unless there is important news I will not be sending texts or emails.
It goes without saying but Many Thanks to everyone for your kind words and support so far.
As some of you may know we went to the USA in September 2007 I think we were in Kennebunkport and there was a collection of hats and t-shirts which I admired but thought when could I possibly wear that in polite company?, I now know when Jean could have worn it!
The caption read "I Survived Shit Creek"
If your new to this page, you may
want to start at the bottom and work up - no pun intended!
|Thursday - 17/12/09||
Just to say a special thanks to all who attended Jean's funeral today, the number of people certainly seem to have cheered up our respective parents.
I know that some of you travelled long distances to be there, and others made special arrangements to be off work, it is much appreciated.
It was a sad day but an 'enjoyable' one all the same, if funerals can be enjoyable, it was a pleasure to see the high regard in which you all held Jean.
I think Rob (the minister), Will (the funeral director) and the French Hen did Jean proud.
I know I need not say it but she will be much missed.
Take care and I hope you have a good Christmas and that the New Year brings good news.
The funeral will take place on Thursday the
17th of December at 11:00, at Stourbridge Crematorium, cars will leave our
house at 10:30
Whilst Jean was a big lover of flowers we discussed this and would prefer flowers only from close family.
If you feel you must send a floral tribute then it should go the funeral directors or the crematorium as below. Her favourite colours were yellow and more latterly purple.
Funeral Directors - JT Brookes & Co, 68/72 Mount Pleasant, Quarry Bank, Brierley Hill, DY5 2YP
Crematorium - Stourbridge Crematorium, South
Road, Stourbridge, West Midlands, DY8 3RQ
I hope that you can join us after the service at The French Hen, Bromsgrove Road, Clent, Stourbridge, DY9 9PY
Monday - 7/12/09
It is with great sadness that I have to inform you that Jean passed away at 8:30pm on Monday Night.
It was fairly peaceful, Jo and
Geoff were also present.
|Monday - 7/12/09||
After a very difficult 48
hours Jean was admitted to Mary Stevens Hospice today. She knows where she
is but is completely out of it. She had a bad day yesterday and really bad
night last night, she told me she didn't think she would make it through
Sunday night. She was very poorly today.
|Thursday - 3/12/09||
Well I am not sure about
the Grumpmeister but the last 48 hours have certainly brought out the
Blubmeister in me, if it wasn't so sad it would be funny.
As previously mentioned Jean has been very disorientated at times, usually after she has taken her night time concoction, and Wednesday night was a shocker. She started rambling and wanted to go to the bathroom, trouble was she had 'no legs' and I had to help her there. Then she was so out of it (you would have thought she was totally bladdered) she didn't know why she was there. Then I had to carry her back to the bedroom. I knew I was going to be in trouble and she was out of bed again at 2:30 and 3:30. To see her in this state and to realise that you can not cope, is very upsetting. I guess it could be worse, we could be in the situation where she doesn't recognise me and is attacking me; fortunately that is not the case.
We have discussed going into care today, but we have taken other measures to try and put it off. A night sitter has been suggested but not quite sure what this will attain.
There are a couple of theories about the disorientation: her weight loss could mean the dosage is too strong: her kidneys are not functioning correctly and so the drugs are more 'toxic': or her fluid intake is low.
Today she remembers very little about last night's events and has been very comfortable, and the coughing and phlegm are better. She sounds as if she has a sore throat, but its not sore; of course she is wondering if this is another manifestation of the cancer. Lets hope that tonight is less traumatic.
stop press - Thursday night still some rambling for 10 minutes but much much better.
|Wednesday - 2/12/09||
developed a chest infection and was coughing up blood on Sunday, this has
subsequently turned and there is no longer blood, but her rib cage/chest is
very painful. She has been prescribed antibiotics. The drugs appear to be
knocking her about, she is rambling when she goes to sleep; and last night
she 'jumped out of bed' completely disorientated, went into my office,
rather than the bathroom, and I'm lucky I have a machine to type on! She
then fell when getting off the loo and didn't have the strength to get back
up. She has just told me she is tired of feeling poorly and just wants
to sleep. She might pull together, as she has done on a number of occasions,
but she is very very ill. Very worrying times.
I am closing the well wishers page clearly I grossly overestimated the number of readers who wanted to tell Jean what a 'good egg' she is. Thanks to all who have done it either publicly or privately.
|Thursday - 26/11/09||
ups and downs, Jean eventually picked up a little on Monday, Tuesday she
felt ok, Wednesday morning she was good but then went down hill
rapidly in the afternoon. She's ok this morning.
Whilst she is eating she is not eating a lot and there is significant weight loss. Just about keeping on top of the pain the Diclofenac is being missed, we may try and reintroduce it.
|Monday - 23/11/09||
a case of ups and downs, so many times in the past month I/we have been
taken to the edge only to step back from it, and to be honest I am losing
track of what has happened and when.
Jean was bleeding into her bag so that was cause for concern, and she was adamant she did not want another operation. So the professionals came up with a plan to try a different drug, Tranexamic Acid, and drop the Diclofenac which has always seemed to do Jean some good, but could be causing internal bleeding. We are also to up the steroids and the Omeprazole. This has had a couple of effects, the bleeding already appears to have reduced but Jean has felt unwell.
She spent all of yesterday apart from 45 minutes in bed. Those 45 minutes knocked her about and she did not feel good last night. She couldn't even celebrate when Jon and Edward were ousted!
She slept reasonably well, waking me once or twice with 'shouts' of pain, and this morning she doesn't look well and doesn't feel well. Of late she has had a very healthy appetite but as yet has not had anything to eat. Let's hope she picks up, as I say it is a case of ups and downs.
|Wednesday - 18/11/09||
fat lot to report really, the breathing is back to where it was prior to the
transfusion, if it did have any effect it was only for 48 hours, the
professionals are considering their next move. I'm not sure if its the
oxygen but 3 times now she has had a pain originating in her sternum and
going up into her ears - frightening and weird or should that be weared.
Sunday was bit of a marathon for Jean, first the carer came, then her Mom and Dad, then Sally (enough to send anyone round the twist) then Jo, then Rachel so between 9:30 and 16:00 Jean was in constant demand, she went to bed happy to have seen them all but bushed. Deb visited this evening with tails of adventures and crab apple jelly. She is always on the go, running, walking the dog, cooking, and that's before going to work at 7:30; she's a whirlwind but it's always a pleasure to see her.
|Saturday - 14/11/09||
has been a stormy old 48 hours in more ways than one. You can see from the
last update that Jean was to have another transfusion. This was arranged for
Thursday, Jean was in two minds as to whether to go as her breathing was
very very bad. So I managed to get her there but guess what, the blood
failed to materialise; they apparently sent it to Redditch rather than
Kidderminster, so they rescheduled for Friday. So she came back home and
mentally and physically she was in a very bad way. I normally get some R&R
on a Thursday evening but she asked me to stay in on both Thursday and
Friday. I have to be honest and say I wondered if she would get through
Thursday night. Anyway she did get through, but she awoke on Friday morning
refusing to go for the transfusion. We received a call at about 9:15 saying
the blood had turned up and they were awaiting Jean, at which point to use
Jean's words, she 'threw her toys out of the pram'. I'm not sure how but I
managed to persuade her to go and she feels a little better for the
transfusion. She looks quite well today and the breathing is still a problem
when she exerts herself e.g. walking to the bathroom, but she doesn't
constantly need oxygen.
Tuesday - 10/11/09
GP called last night to deliver a DNR form, oddly the patient doesn't sign
it the doctor does as it is an assessment made by the GP regarding
your mental state so you know what you are agreeing to, and also to advise
that her haemoglobin count is down again (8.1), so they are going to try
another transfusion. If you are a regular reader you will know the last
transfusion had little or no impact whatsoever, but I guess we will try
Jean has not left the house for over a week now, but we plan to try and get out today just for 30 minutes.
David and Amanda came up from Christchurch on Sunday so it was nice to see them.
Thank you to all of the very kind people who have offered to help in whatever way they can; I hope that one day I can be equally as kind.
For those of you that may recall, and I guess very few will, but Mr McKain (Doug, Geoff, Fiona and Andrew's father) died last weekend. He was Jean's first boss and a very clever man. Sadly he had been suffering with Parkinson's disease for a number of years. I'm not sure on his age but I guess he would be around 80.
|Thursday - 5/11/09||
delivered last night, making some small difference. Jean is exhausted, tired
of fighting and fed up with something new every week.
Because of the other symptoms we have had to postpone the lymphoedema treatment which is a shame because there did appear to be some benefit.
Home help starts tomorrow.
|Monday - 2/11/09||
very very breathless. Ruth the Macmillan nurse is organising oxygen. Jean is
considering changing her name to
and offering to appear as a body double in Benidorm. Oooerrr that makes me
The doctor has advised her to come up and downstairs as little as possible, the slightest exertion leaves her exhausted and breathless.
My ma and pa came this weekend so that was a bit of light relief and Sally came over yesterday afternoon.
|Tuesday - 27/10/09||
manage a couple of hours on Sunday, but Jean was bushed as a result.
She was very breathless today, which frightened her and we had to call out the doctor.
More drugs, steroids this time, which may mean we can reduce some of the other 'twenty nine'.
|Friday - 23/10/09||
just make it clear that the email address below does not go straight to
Jean, and contrary to what some of you might think the Grumpmeister, El
Capitan, L'Ogre, der Skeptiker, passes on all of your emails if they have
arrived with me, some of you have been communicating directly with Jean, but
emails sent to this address will be published on the well wishers site, the
link is above. You will note I have even retained the derogatory comments
that some of you have made about me.
I heard some really bad new yesterday on Radio 4, and I think we should start taking action now. The European land mass will undoubtedly move toward the southern land mass and this will happen in around 250 million years time. If I understand this correctly temperatures will rise, there will be coastal erosion and foreign holidays will be cheaper. In addition there will also be another ice age this will cause sea levels to fall. Cripes good job I switched off that light bulb otherwise it might have happened sooner. "We're all doomed"
We should be going for a meal on Sunday, we will call in but we won't stay Jean is just not up to it.
Clocks go back on Saturday night, how time flies I've only just put them forward, then reset them because of a power cut then reset them again because of another power cut 30 minutes later.
Monday - 19/10/09
the miraculous transformation as a result of the transfusion has not taken
place. Jean now has slightly more energy but if she comes upstairs too
quickly she collapses because of a lack of Oxygen. We called to see Jean's
GP Dr Heywood today and basically he said that the transfusion should have
an almost immediate effect. He then read out most of the contents of Dr
Geh's last letter and imparted information to which Jean was not privy; I
was aware of the information because I had had a private conversation with
him on our last visit. She had already worked it out for herself but hearing
it in words of one syllable somehow brings it home. This caused her some
upset and I have to admit I was also fighting back the tears with little
To aid the breathlessness she has been prescribed morphine which strangely apparently fools the brain, in that case I reckon someone's been feeding it me for years. I'll try and keep you posted.
I know a lot of people who visit this page would like to pass on their comments to Jean so I have put an email address to the left, you will need to type it there's no hyperlink; try and keep the comments decent; I'll reserve editorial privileges but send us the emails and I will put them, on a new page.
Yes I know I could do it on facebook but as I am a facebook-o-phobe and a twitter-o-phobe and for that matter a bandwagon-o-phobe your stuck with what I am offering.
|Friday - 16/10/09||
Anniversary tomorrow, 22 years of wedded bliss and never a cross word (yeah
right - I believe you thousands wouldn't). So were going out on the town
from early morning until dawn, no expense spared! Meanwhile back in the real
Just got back from Kidderminster where Jean has had a transfusion "2 pints of best B Rhesus negative and a packet of crisps please barman!".
If there is to be an effect we should know within 24 hours. I've got everything crossed.
Have great weekend.
|Wednesday - 07/10/09||
Meanwhile back in the bat cave - For the most part Jean has been quite good
after this change of tablet, she was in some pain on Monday, having had a
very good day on Sunday. Personally I think this will happen, there will be
good days and bad days and at the moment we are in a good cycle. She is now
taking 21 tablets a day, you can hear her coming. The right leg the 'good
one' has started to swell in the foot, which is how the left one started. I
guess it's a surprise it hasn't happened before now. Jean is sleeping quite
well although she is hallucinating a little, some of the conversations we
have are brilliant. Opticians on Monday, Docs yesterday for a blood test,
they are considering a transfusion, Lymphoedema clinic this afternoon. She
came with me to Sainsburys last Friday as a special treat, she will NOT be
coming with me this Friday!
|Thursday - 01/10/09||
bringing you up to date, Jean has been prescribed a new tablet, Gabapentin,
which appears to be having a positive affect. Looking at its uses I don't
quite understand why, but who cares. She is without pain at present, and
when she is without pain she is happy. She is still aware that there is some
swelling that has not diminished, but she is not rolling around as she was.
Since stopping the antibiotics the sickness has now stopped, the last time was
In a total turnaround to last weekend we even managed a few laughs, she was rambling in her sleep... she refused to give 2 girls drinks at half price, and that man from Mercedes has never delivered!
Its funny before all of this Jean could never ever remember a dream and even claimed she didn't dream; me I dream for England.
Its not all good news I am still grumpy. Have a good weekend.
|Tuesday - 28/09/09||
Grumpy here, Jean has not been at all well over the past few days, having
been sick a couple of times and her existing pain medication is not having
the effect it once was. She is managing to sleep but this is with the aid of
sleeping tablets and has been for many months. The Lymphoedema girls are
reluctant to do much because of the infection Jean is carrying, advising
that they could actually make things worse. As a result parts of the leg are
quite swollen, you get 'pockets' developing which they can shift but I
can't. The groin is also very hard. In addition she is experiencing some
lower back pain, which we think may be pressure on her kidneys. None of this
bodes well but we have been here before so lets hope she picks up soon.
|Wednesday - 23/09/09||
We have collected the 'new car' and whilst we
haven't been far, as we are building up slowly, it appears to be more
comfortable for Jean when we are travelling, which is a good thing. We still
don't think that Jean could travel for hours and will require frequent
Went to the docs yesterday, Jean is now taking some antibiotics which she says are making her feel a little queasy. She wasn't too good at the latter end of last week, but picked up somewhat about Sunday, so we have had nearly four goodish days.
Off to Lymphoedema this afternoon, let's hope she doesn't feel as bad as last week!
reading Steveís recent blogs and there certainly appears to be a significant
reduction in humour of late. I have also noticed an increase in grumpiness
so watch out everyone Ė he is particularly cross with politicians, radio
presenters on Radio 1, 2. 3 and 4, TV personalities on channels 1 to 100,
professional footballers especially Stephen the donkey Gerard, anything to
do with climate change and people who press the pedestrian crossing button
and then do not wait, causing him to consume fuel unnecessarily. He
continually thinks he is communicating with all the aforementioned but sadly
it is only poor me that can hear him ( oh, and anyone living within 100
yards of Rooks Meadow). Poor old Wooster is coming in for a bit of flack
too so heís keeping his head down as best he can.
Thanks for continuing to visit us after all this time.
|Thursday - 17/09/09||
I'm in trouble now for chopping Ian's head off
(that's Jean brother) in the picture below.
The observant readers amongst you may have realised that Monday was Jean's 51st, phew how time flies when you are having fun.
We didn't do anything but that was the way that Jean wanted it, she was happy just being comfortable for the day. She was in a bit of trouble last Sunday then, Monday and Tuesday were good, but last night after visiting the Lymphoedema clinic she was in some discomfort which is unusual. We shall see what today brings.
We are collecting a 'new' car this week, the theory being that Jean can recline fully if necessary, with her feet up, a bit like a sun lounger, so fingers crossed we will be able to get out more, as at present anything more than 45 minutes in the car in a seated position causes problems in the leg.
Thursday - 10/09/09
'You don't know what you've got til its
gone...' I don't think I had ever really appreciated the words to the song
but boy is it true.
'Don't put off until tomorrow', that's another one. Of course its easy to be wise after the event, we should have done this or we should have done that, yep that's right, but our plans didn't factor in being brought to such an abrupt halt, simple things that we had just accepted and bigger things that we fitted in around our working lives were not major decisions we just did them.
Now everything requires consideration, that's if it passes the 'don't be ridiculous test' in the first place. I guess at one time we were 'time poor', now we are 'time rich', well sort of, but health prevents us from doing so much.
I don't give advice as I take umbrage when people ask me for advice and then ignore it, but one day ask yourself what it's all about, make a list of what you would like to do before you get old or too ill to do it, and most importantly do something about it.
Since our visit to Dr Geh, Jean has been upset, she's better today, but she is upset that he is not planning to see her again, that and what he did and didn't say. He can't win if he had planned to see her that would have stressed her and Dr Geh and Jean discussed this and decided not to make a further appointment.
Ruth the Macmillan nurse is coming this afternoon so of to the shops to stock up on Kit Kats, she never eats them, she just takes them with her.
|Tuesday - 08/09/09||
Jean has been somewhat stressed in the past
week as she knew she had to see Dr Geh last night regarding the CT scan
He told Jean there had been no change and so wasn't proposing any more treatment at this stage. She then advised she didn't think she was passing water as often as she had, so we had to have a kidney function test, which came back with no abnormal results - Hooooraaahhh, so that was good.
Jean has picked up somewhat since her visit. We do not have another visit planned but the door is open should we need to get back to Dr Geh.
|Monday - 30/08/09||
One or two ups and downs in the past week but
all in all not too bad. For us it has been a hectic week, Jo's Moms Birthday
for a couple of hours last Saturday, Jean's Dad's birthday on Sunday, Sally
came over on Saturday and we went to Steve and Sandie's BBQ on Sunday, oh
yes and Lymphoedema on Wednesday - so we drive to Pershore, 45 minutes, Jean
can't get into the building, 15 minutes, I have an appointment up the road,
so at the end of the treatment she decides to walk up the road to 'make life
easier' 10 minutes, then 60 minutes back because of the traffic, so all in
all any benefit from the Lymphoedema treatment was negated by these inbuilt
Jean has contacted Dr Geh's secretary he is on vacation at the moment so no appointment this week, next Monday? who knows.
Jean told me a funny story, a guy went into a well known store and spotted the Christmas Cards, curious he asked when they would be getting the Halloween stuff in, the assistant replied that it was 'far too early for Halloween!'
Batten down the hatches storms this week.
|Friday - 21/08/09||
Jean as been quite well, she even popped into
work for an hour yesterday just to see the new premises etc. But just that
simple effort had knock on effects and the leg is slightly enlarged today.
As yet we still don't have any appointment to review the CT scan and when I asked Jean this morning there is no doubt she is postponing it as long as possible.
Couple of birthdays this weekend, Jean's Dad and Jo's Mom both who are celebrating ages beyond what they would have imagined as kids. We intend to spend an hour or so with both.
Hope you enjoy the weekend and if your a cricket fan (I'm not) that it works out well.
|Sunday - 16/08/09||
As many of you will know I think I am losing
the plot, I sent a story out this week describing something I did in 2010
and when I came to edit this page I noticed that last weeks posting was in
2007. It must be a sign of something but I have noticed that quite often I
say the wrong thing, but then I know I have said the wrong thing, as for
typing don't even go there, I often look at the screen and think did I
really just type that or has autocorrect substituted those words. I was
listening to the radio a couple of weeks ago and they have now decided
spelling is not important, have yew eva herd such a load of rhubarb in haul
of yaw life.
Yesterday it said in the paper they had discovered that modern day professionals are not so clever as their older counterparts - no way I would never have guessed that, but then again what do I know about Facebook, Twitter and Big Brother, so I guess it all depends on the questions in the IQ test.
Ok to the point Jean has been quite well, we think its the Amitriptyline but on a couple of days she has had no energy, so its either no energy and no nerve pain or vice versa, but overall she is moving about and quite jolly.
We haven't had notification of a consultation, and to be honest Jean is not pushing she is enjoying the moment. She will chase if we do not hear anything this week.
I had my first Christmas party 'invite' this week. Look out for Xmas cards 1st week of September.
|Sunday - 09/08/09||
The consultation with Mr Radley went well, he
is pleased with his handy work and the way Jean is responding, no more plans
to see him unless Jean wants to. I have to laugh because when he asked Jean
how she was and she gave all the right answers, he said words to the effect
"Well that's good because when it goes wrong it goes horribly wrong". He
never mentioned that in his pre match talk!
One thing that came out of the consultation was another scan and that is booked for tomorrow, no results tomorrow follow up will be next week. So God forbid if you or your friends ever need a colostomy we know a very good man.
In the intervening period for the most part Jean has been quite good, she did have a dip yesterday, woke up feeling rubbish and was unable to shake it off.
Claire the palliative care consultant came on Friday, Jean described the nerve pain she is getting in her 'good leg' and Claire has advised upping the Amitriptyline from 20mg to 30mg. She will also be having physiotherapy to see if they can build the 'good leg' back up.
Jean is quite happy with her 'new bottom' and thinks going to the toilet the modern way is great in comparison to the old fashioned way. Personally I'm not so convinced, and wont be rushing out to get myself one.
|Wednesday - 29/07/09||
Jean is doing ok, minor dip on Monday but
otherwise ok. Familiarisation with the 'new bottom' continues apace.
Just been to see the Lymphoedema nurse so Jean feels a little better. Off to see Mr Radley on Friday not expecting any surprises as everything would appear to have gone as planned.
One problem is that you get carried away because Jean has had an improvement in one department you forget that other departments are still 'on strike', e.g. it would still be virtually impossible for us to fly, or travel any reasonable distance in the car. Walking has been a problem for a while, and now Jean is venturing out she is finding she is unfit, and short of breath by the time we return (She's not the only one!). Loving the BBQ Summer, mind you there must be a positive to this: No hot weather - no crowds gathering together - less chance of swine flu spreading. Hmmmm then again perhaps those winter conditions that flu loves will be here sooner rather than later.
|Tuesday - 21/07/09||
Jean is getting on well, her 'good leg' is now
giving her some grief she is getting nerve pain shooting down the leg;
strangely this is not there all the time and comes on early evening. The
pain was bad last night and despite pain killers and sleeping tablets it
kept Jean awake until 03:30.
The bad leg: whilst it initially showed signs of improvement, when we purchased the chi machine and started taking diuretics, the improvement has not continued. There was a huge difference whilst she was in hospital and whilst the immediate reaction might be that this was due to bed rest you will be surprised to know that "I'm not so sure", as she was encouraged to get up and move about whilst in hospital. Further she can lie in bed all day here and not get the same result. My current theory, which Jean will not explore, is that it was to do with the anti DVT socks they make you wear, including night time.
Normally Jean will wear support tights throughout the day, I am not a huge fan of the support tights I certainly think that the good leg has withered as a result. I also liken them to spectacles, your eyes rarely get better when you wear spectacles, they generally get worse such that your prescription needs to be increased. I think the 'bad leg' has a dependency on the tights, could you wean the leg off them? I doubt it, certainly not completely, but from what I can understand the Australians do not encourage full time use.
Ruth (the Macmillan nurse) was astonished when she saw Jean's scars, or not as the operation was done laparoscopically. There are 3 incisions, one through the belly button, one being the stoma itself and a tiny gnat bite, Ruth says she has been very lucky this is cutting edge stuff!
|Tuesday - 14/07/09||
In years to come, when you are asked the
question, who was it that famously said "All a girl needs is a wig and a
colostomy", you will know the answer Jean Rabone on 14th July 2009.
Jean is quite pleased, she is getting on well with her 'new bottom' as she calls it, and to be honest I can't quite believe how well she has taken to it. The District Nurse has been today, so we haven't fallen through the cracks this time, and she is quite happy with Jean and her wounds which are healing nicely.
I guess confidence will build over a period of time and she will get used to what is and isn't possible/practical.
I have to say that all involved in this procedure have been great, and even though it's a difficult subject it has been made easier by Mr Radley, Annette, and Ruth.
For the most part I'm steering well clear, silly really as there may be a point when I may have to help out. Jean has advised that she is probably more worried than I am about this day - too right, she ought to be.
|Sunday - 12/07/09||
11:15 I have been to see Jean already this
morning and she was feeling less well than yesterday, one or two aches and
pains which we think could be from so much bed rest, but just had a call; Mr
Radley has just been and told her she can come home, so off to fetch her
now. Must be the fastest colostomy recovery in history other than
And there was me thinking I was having some peace and quiet for a few days, that's scuppered my fun!
Friday - 10/07/09
06:30 - Mother and Baby doing well, ooooppps my mistake
that's my Eastern European babes site.
Jean didn't go down until 8 o'clock and was down for about 90 mins. She called me about 10:30 and was back in her room, sounding slightly woozy, but as far as I could tell the operation went as planned. I will post further info if there is anything to report. She is in Room 11 of the Colmore Suite at the Priory Edgbaston.
11:45 Just got back from the Priory, Mr Radley
visited whilst I was there, he was very pleased with the way things went.
Jean's fat belly caused him very little grief. He's talking about getting
her out as soon as possible, my bet would be Tuesday but he seems to be
indicating earlier. She's had breakfast and looking forward to lunch, sort
of the choice was naff. Now here's and interesting snippet, she says the
beds are more comfortable and the furniture is better in the QE! (that's NHS
to you out of towners)
|Friday - 03/07/09||
Unfortunately it's on next Thursday - shazbad!!!
Jean is resolute, accustomed to the idea and looking forward to being away from me for a few days.
Tuesday - 30/06/09
How time flies when your having fun, half way
through the year already, only 2 months until the Xmas cards come into the
shops!. Went for the X-Ray no conclusions as yet, Dr McCafferty did explain
some of the images so Jean is not completely in the dark.
I was thinking about Jean last night and what she has to put up with, '18 months' ago she thought she had a touch of farmer Giles and some back pain - oh how I wish that was all it was!
Lost most of her hair - but it is coming back
Lost or losing toe and finger nails.
Lymphoedemous leg - so she cant walk any distance.
Difficulties going to the toilet and has to go frequently.
Pain in the buttocks Ė so she canít sit.
Taking anti-depressants, sleeping pills, and pain killers.
Having to put up with my whinging about the BBC switching programmes from BBC1 to BBC2 just because some bloke is playing Tennis under a new roof!
I guess she's quite lucky really, at least she doesn't have hay fever any more, and I know its sounds weird but I am sure the Taxotere has improved her memory!
Whilst some of this is caused by the disease itself a lot is caused by the treatment particularly chemotherapy and radiotherapy. It may be the best we have but boy does it need some attention.
This is Jean speaking!
I have just read Steve's posting and am wondering why anyone bothers to read it - what a miserable old git he is!!!
Everything that he says is true (except
the whiskers on my chin and the Eastern European women (that's what she
thinks)) but there are some good times and we do have some laughs. I have
gone from the most private, tidy, prudish wife to a complete exhibitionist
and every strange occurrence is shared in graphic detail!
Thanks for tuning in after all this time.
|Saturday - 27/06/09||
Just to let you know what's happening or not,
we went to see Mr Radley yesterday and between us we came to the conclusion
that the colostomy scheduled for Monday would be postponed.
Jean had been thinking this way for a few days and was pleased with the decision. That does not mean its being ruled out, Jean has got to go for a contrast X-Ray on Monday to see if they can identify just how constricted she is, depending on the results they may recommend an op. Back to see Mr Radley next Friday for the analysis. A dummy stick on ileostomy and bags have been provided for her to get used to the idea.
As an aside the trip back at 18:30 was dreadful, in Edgbaston, Harborne and Quinton roads were flooded, cars were broken down, rubble in the roads, just awful then we got to Junction 3 of the M5 and there was no sign of rain.
|Friday - 19/06/09||
Well as some of you who read this page will
realise I could easily audition for the part of Victor Meldrew, I'm a
natural. So rather than bringing you bad news I thought I would post some ok
news, since our visit on Monday, Jean has been quite chirpy and the leg has
had a slight reduction in volume. My suspicion at this stage would be its
due to the Taxotere stopping or the diuretic; either way its a move in the
right direction and whilst all of her shoes aren't suitable, I am glad I
stopped Jean from throwing them all away a couple of months ago. We are
still not passing the boot test, the calf is still large and firm and the
zip will not fasten.
Also hair seems to be growing back, it's not noticeable on her bonce at this stage, but her chin is really prickly!
The Jury's out on the colostomy, should she go for it or should she postpone it as long as possible?
Have a good weekend it's supposed to be warming up for Wimbledon.
|Monday - 15/06/09||
Another bad day at black rock - The palliative
care consultant came to see Jean on Friday she touched on one or two home
truths which were not easy to confront. She also prescribed a nerve blocking
drug, Amitriptyline, which works on one in three people and we hope will
work on Jean, thus relieving some of the pain in the backside. In the meantime a change of drug from Naproxen to Ibuprofen caused some very bad
Additionally as you can deduce from some of the notes here, Jean has not been that happy in the toilet department for some weeks. Two physical examinations are indicating that it could be a sensible move to consider a colostomy. Jean needs to make a decision, which as you can imagine is a difficult one. If it goes ahead the procedure could be soon.
|Thursday - 11/06/09||
Can't believe its been 10 days since I last
posted but believe me in another way it seems like a lifetime. We have had a
lot of upset, an awful lot of lying around and some very gradual
The dash to the toilet and back stopped then she had constipation, the constipation could be caused by a codeine based pain killer, but Jean assumes that it is the tumour growing causing a blockage. So then she has a laxative and getting the balance right is a real game. So today we are back to the dash.
The leg seems as bad as ever to me but the Lymphoedema nurse says that she can see some minor improvement, but at least its not getting bigger. My current expectation is that once the chemo works its way out and hair starts growing, the diuretics kick in and the chi machine has an effect then by 'September' there may be some improvement, but in all honesty who can say.
We are with Dr Geh on Monday but only a check up so keeping 'em crossed.
|Monday - 01/06/09||
Jean has not been the best for the past few
days, you wouldn't think someone could go to the toilet that much, plus the
fact she has been sick a couple of times, and I can hear her being sick now.
Honestly you wouldn't want to treat a dog like this, if this is the best we
have, god help us. We have been to see the doc today he has prescribed a
diuretic so we shall see what happens. The chi machine is weird, is it doing
any good? its way to soon to say.
The song is credited to Simon and Garfunkel and the station is accredited as Widnes.
|Wednesday - 27/05/09||
I'm sitting a the railway station got a ticket
for my destination - Artist and Station please; but really as some of you
will know we are back from our hols. Jean wasn't the best and in all honesty
I think that going away was a mistake. Jean did manage to make the evening
meal everyday, and swam on quite a few occasions but any visits ashore were
severely limited due to the problems with the leg. On the face of it you
would think ok, get a mobility scooter or a wheelchair but she cant sit for
any length of time so it's not really an option. Our travelling companions,
Amanda David and their adopted son Billy Bear (don't ask), were most
understanding and did their best to make it a pleasant vacation, they even
offered to give me a hand throwing Jean overboard along with some of the
senior officers who charged stupid prices for drink $7.50 (£5.00).
We went for chemo yesterday and it had been touch and go all day, Jean in consultation with Dr Geh deciding to have this the 6th chemo but then stop. Apparently there is nothing 'magic' about 8 treatments.
Anyway we are back chemo'd up and Jean is actually arguing with me over this blog so she's all right (today).
I'm told that Hils is 99% recovered from the Bells Palsy so that's good news, and well done to Shirley Finlay and thanks to all who donated.
|Tuesday - 19/05/09||We've had a few ups and downs in the past week, the leg and one or
two other bits are giving Jean some problems. The trouble is
differentiating the problems caused by her condition from the problems
caused by other things e.g. aches and pains from swimming, and she tends
to forget this, she naturally assumes, and you can't blame her, that it is
all condition related.
She lost her eyebrows this week so we are pencilling them on. Chemo No 6 next Tuesday; she is going to seek Dr Geh's advice but she is talking about stopping, 8 were initially recommended, so we shall see what he says.
I doubt I will post again before the weekend so have a a good break.
|Monday - 11/04/05||Jean is ok,
the leg is still giving her problems, seems silly to tell you really as
from what we can gather it's never likely to get better. We have ordered a
Sun Ancon Chi machine which may help, it won't arrive for a few days but I
will keep you informed as to the beneficial effects if there are any. We
are also trying swimming as that is supposed to help both from a
compression perspective and an exercise perspective. Jean reckons she's
still like a five year old, you know inching into the pool going "ooh ooh
ooh it's really cold", oh all right you sussed me out, that's me not
|Monday - 04/05/09||
Jean is quite chirpy today and had quite a
good weekend with two of her pals paying a visit.
We went to see a Lymphoedema 'consultant' on Friday, what a complete eejit. In a nutshell she told Jean [ed] "there was a massive tumour (even though she didn't even know Jean had cancer when we walked in) which was causing the problem both with the lymphatic and the venous systems. We were wasting our time looking for alternative solutions, medication was waste of time, the only point to MLD was if it made Jean feel any better, and no matter what we did the leg would just get bigger and bigger."
Needless to say even before my questions, to which she was incapable of providing sensible answers, I had decided she wasn't worth the steam off my chips. I stopped short of telling her, but I think she got the idea when Jean got dressed and I stood up to terminate the consultation. Where do some of these people get off, do they learn their bedside manner at the Black Adder school of diplomacy?, God help them if they ever come into contact with someone who is medically qualified.
I called the swine flu help line the other day, I didn't get through I just kept getting crackling!
|Tuesday - 28/04/09||
Jean has still been feeling sick, it seems to
come on each evening about 18:30, we have no ideas why, but the last time
she was actually sick was Saturday.
She is quite cheery today and trying on a variety of scarves to hide he hair and protect her scalp. We've had the Rambo look, the Marco P-W look, the Yasser Arafat look, the Mrs Mop look and the big black mama look. I have suggested an hijab.
Off to the Lymphoedema nurse tomorrow, there is no reduction in size and whilst we can encourage a softening and reduction it can be back up within minutes - blasted thing.
Good news Hilary's face is getting better from the Bells Palsy, and she can now whistle - look out lads.
|Friday - 24/04/09||
Well it has been a torrid few days, Jean's
reaction to the chemotherapy has been the worst this time out of the last 5
Very uncomfortable and physically sick, she has spent most of T/W/Th and this morning in bed. I just had to take this photograph and as she says at least she is smiling today.
I have previously advised she is looking like Rambo, having seen clips of Hell's kitchen this week we
think it could be Marco P-W.
Enjoy the weekend although I believe it is supposed to be wet.
|Monday - 20/04/09||
Just got back from the Priory and it seems to
have been a long session today. Fundamentally there was some concern over
Jean's leg as it is large and can be red and blotchy, so we had to have a
Doppler ultrasound scan to determine whether there was blood clot. From what
the scan said there wasn't a clot, although the blood seemed to be flowing
at an unusual rate in the leg. This in itself could cause a difference in
temperature. So it was then decided that we could continue with the chemo,
which has to be ordered from pharmacy and then administered.
We had previously discussed the scan results from last Wednesday, for the most part they were ok.
Strangely, on reflection, the prime tumour was not mentioned, the diseased lymph nodes were and there has been no increase in size - so good news. The not so good news came in the form of the fact that the two most recently identified sites in the lungs have grown very slightly from 2mm to 4mm over 3 months. Dr Geh does not seem unduly perturbed and suggested that we continue with the chemotherapy. Jean is quite upbeat about the news.
|Monday - 13/04/09||
Hope you all had a good weekend.
Well we have had plenty of upset over the weekend, the damn leg just will not reduce in size. After a lot of massage it will soften but its not reducing in size, consequently, as the foot is also swollen, Jean has only a couple of pairs of shoes she can get into or wear comfortably. As I have said so many times before this is upsetting and causes Jean to start obsessing and become very upset.
As a result of this swelling I have been doing further digging on the internet and quite honestly I am appalled, I have said so many times here that no one really knows and whilst fundamentally I believe that is true, clearly from what I am finding the health 'professionals' are aware but failed dismally to make us aware. If one person had failed that would be bad enough but in my view a number of people had the opportunity to advise us that radiotherapy was likely to cause lymphoedma and as such these are the precautions that should be taken, one of which is avoid sitting for long distances, and as you are aware Jean's condition became worse after a trip to Bournemouth. Contrary to what some of you may think Jean and I are not stupid or silly people and if we had been made aware of the precautions we should take, we would have taken them and neither I nor Jean can remember being made aware of these precautions. It gets worse; most articles I am reading are saying that once lymphoedema occurs treatment should be given twice a day for about 4 weeks: Jean is lucky to get treatment once a week! Not only that the treatment should be accompanied by drugs; Jean has not had any! Also if you look back to my rantings as long ago as last July Jean was complaining about a plate like sensation in her buttocks, she was convinced it was a tumour, this was conveyed to many health professionals who were unable to offer any comment: this was early lymphoedema manifesting itself, settling in the lowest part of her body whilst she was in bed. Should it really be like this? - I don't think so.
Of course I am ranting here about lymphoedema but don't forget that Jean went to a 'well woman' clinic in June 2007 from what we now know the early stages of the cancer should have been detected then and they weren't.
If you have stumbled upon this page by accident whilst doing research then you may be interested in these articles particularly the Australian ones some of which date from 1995 some 14 years ago and to date no one has conveyed this information to us.
I found this from Birmingham NHS it was never passed on to us http://www.birminghamcancer.nhs.uk/viewdoc.ashx?id=bAxl38HGlFExFTrxna6I4A%3D%3D
These three are from Australia, the second one
is informative but is slightly superseded by the third. Don't ignore them,
there are different types of treatment but we were told that Jean's
treatment is based upon the Casley-Smith method and these articles are by
|Friday - 10/04/09||
Well it's the old story I guess, in that the
scan can't come quick enough. Jean is convinced of the worst.
I am trying to massage the leg but as I am not trained in MLD you can't be sure that you are doing the right thing. As I understand it, it needs to be rhythmic and at the right pressure. Jean says it helps and there is a noticeable difference in the density of the leg post the massage but in terms of circumference there does not appear to be any improvement day on day. Thing is we won't know whether its fluid retention, and if it is why doesn't it manifest itself in other limbs, until the Taxotere stops and that is many weeks away, providing the CT scan says the chemo is doing some good.
I'm trying to find out the price of a piece of kit available in Australia called Bodyflow, this effectively is electronic MLD, well not quite but it stimulates the smooth muscles which in turn causes the lymph to drain. I'm not aware of anyone selling in this country and have contacted the manufacturers.
Enjoy the Easter break - weather permitting.
|Monday - 06/04/09||
Me and Rambo (She's taken to wearing a head
band) have just returned from Pershore. It's not actually encouraging, the
left leg is so much bigger and firmer than the right leg and from what the
nurse is saying even with lots of massage the chances of it going down are
remote. There could be a number of causes e.g. the chemo drug (Taxotere)
encourages fluid retention, the lymph nodes are shot, or the cancer is back
in the lymph nodes - we have a CT scan booked for next week. So no one
really knows which personally I find really frustrating, and I think that
has been our experience from day one nobody really knows. One day
|Thursday - 02/04/09||
Well would you believe
it, I thought I would nip down to Excel in London as I had heard Obama-rama
were in town, and I thought I would catch my old mate Barack Room and you
wouldnít believe what happened. By the way nice to see some of you there;
those disguises didnít have me fooled!
|Monday - 30/03/09||
Sorry folks slipped again. Jean is ok at the
moment, the Lymphoedema is giving her cause for concern, particularly the
thigh whereas previously it was the calf and ankle. The chemo made Jean
quite weary this time, so just as you think you have the measure of things
you find out you don't. Jean still have some hair, so she hasn't had to
shave it all off yet, the rug is sitting on the dressing table looking very
lonely. It might come in handy for me for a 70's night, better still I
wouldn't have to change my clothes just my hair style.
Our friend Hilary is not too well at the moment she has Bell's Palsy. Fortunately this should only last for a short while, but we wish her all the best and a speedy recovery.
|Monday - 23/03/09||
Just back from seeing Dr Geh and chemo No 4.
Went quite well in at 15:00 out at 16:30. Dr Geh says he is going to arrange
a scan to see whether the chemo is having the desired effect.
Here's a a good one for you we have enquired about Holiday insurance, it depends to some degree on Jean's immune system, so partially relative to when her last chemo was delivered. Anyway a broker said he could only find one company to quote - £9,600. He advised we should not take the quote seriously- don't worry I haven't!
I said your pals would chip in to fly you home if you needed to, I would stay on and make sure the luggage gets back ok ;-)
|Friday - 20/03/09||
Well at least the guy was sensible enough to
say that Jean shouldn't be there and couldn't understand why she hadn't been
screened out. He says he will defer the second stage of the interview for 12
months. Jean gladly accepted and said she hoped she would be able to attend
The lady in front of us looked a bit suspect, she was on her motorbike, at least I think that's why she had her helmet on as she left, and Jean reckons her pathetic limp got progressively better as she approached the entrance.
Earlier Jean gave blood, in and out in 10 minutes, so lets hope that will work well for us on Monday - yeah right.
Best of luck to your respective rugby teams over the weekend, except yours Hils, oh and yours Marjorie, oh and yours Lyle, oh and yours Enzo, and best not leave out yours Francoise.
It's fence painting for me yippee, wonder if Wooster will help?
|Wednesday - 18/03/09||
Well I'm getting it the neck from Amanda now,
ok ok I forgot to post, the thing is are you interested in my witterings or
are you just looking for reassurance - ok that's very kind your worried
Well she's ok, quite cheery despite living with me. Lymphoedema treatment today and that went well, and she usually feels better. We are still travelling to Pershore which is a pain because it means 3 hours out rather than one and a half.
I did get it in the neck when I suggested to Jean she should put her name and mobile phone number in her syrup just in case it blew off - well it seemed like a good idea to me.
The job centre called today just to remind Jean she has an appointment on Friday, I might tell them what I think; over 2 million people unemployed and they are chasing Jean.
Of course the good news this week is that England won at Rugby, I wish I understood the rules because I don't think the commentators do. Anyway we won and rather convincingly but its a good job we won in the first half.
Blood on Friday, Job Centre on Friday, I'd love to wheel her in in a wheelchair, attached to a drip (no not me!); then chemo on Monday.
I am missing the US elections I'm lost without them (NOT!), so are the BBC on the news today was something about Bob Dylan having an outside loo. Well BBC the UK elections are May 2010 shouldn't you be starting nightly reports now? I wonder how much coverage there will be in the USA of our elections.
|Monday - 09/03/09||
Well if I'm not getting it in the neck from
Jean, I'm getting it from Hils, Jacko, Ruscombe, Darren or Martyn - (the
list goes on), why don't you post more, why aren't there more quizzes, how
are the Eastern European babes and what do you think of Quantitative
Well things are not so dynamic as they once were; with 3 weeks between treatments we pretty much know the pattern, the first week being rubbish. On the mental side Jean is quite down, some of it has been caused by me, some of it is due to the treatment, and some of it is due to a certain celebrity in the media who highlights Jean's plight on pretty much a daily basis.
Will things improve? well of course we hope so, but if we go the full term of treatment there's another 5 to come so about 17 weeks to go. A scan was scheduled after treatment no 4, so in about 4 weeks I would guess, that will tell us if this is doing any good physically. The Lymphoedema is causing Jean some consternation, the support tights help but are warm. She has been told there is more of a requirement to wear them in the warm weather!
Here's a good one for you; as Jean is off sick and as a consequence entitled to sickness benefit, but note technically still employed, she has been summoned to the Job Centre. I guess its a standard letter, but the way its worded they are going to help her find a job. Wouldn't it be sensible to check the reason for the claim!
Perhaps I should start a blog on the stupidity and nonsense I encounter on a daily basis, then again would I ever get any bill paying work done?
|Monday - 02/03/09||
Jean is ok, a little down mentally, more than
she has been for quite some time. We think there are a number of
So we have just been for chemo and all in all it went well, we arrived at 15:00 hrs and Jean was hooked up by 15:15 hrs. The chemo had finished by 15:50 hrs. This was just what we wanted and was even better because one of the nurses advised that the blood testing machine was down and some people had been waiting around since 10:00 hrs, eeeeeekkkkkkkkkk . The only downside was that the drugs weren't ordered until we had finished and they then took 50 minutes to arrive. Don't ask me why!
I'm off to wrap up warm ready for the snow, just when I thought Spring had arrived.
|Tuesday - 24/02/09||
Jean is quite well, a little bit thinner on
top but has not had to wear the rug with a vengeance, she did go out in it
last Saturday lunchtime and was complemented by the few people she told. She
had a good weekend as some of our friends from the Bournemouth area came to
Off for Lymphoedema treatment tomorrow, the regular nurse is off sick so we have to go to Pershore, then on Friday get blood tested in an attempt to shorten the wait on Monday (3rd Chemo session) - I'll keep you apprised, then again you may even hear the explosion from where you are.
Monday - 16/02/09
Well things weren't too bad, certainly not as
bad as the first week in the last session. Jean still has hair but we did
succumb and purchase a syrup. It looks pretty good, hopefully it will turn
out to be a waste of money (I can't believe I just said that!)
The only down side was the wait for the chemo, if you knew how much we were paying for this stuff it's just not acceptable. Their argument is 'well you would have to wait longer at the QE', yes but I'm not paying for it at the QE!
Off to see the GP in a few minutes, stock up on provisions, I am not joking when I say I have to take the car to the chemists, honestly it's true otherwise I would be visiting the docs with back pain!
Anyway Jacko it was George Michael - Teacher, I hope you are not cheating and searching on the internet.
|Sunday - 08/02/09||
Things have been relatively good for the past
2 weeks with no major side effects. Unfortunately although we hoped we had
got away with it, Jean started loosing hair on Friday and considering this
is only the first of 8 doses it looks like an 'Irish' will be on the cards.
So tomorrow back to the Priory for the second dose of chemotherapy and the possibility of a lousy week in prospect, we can only hope the effect isn't cumulative and that she is only off colour for a week.
We went to Sally's birthday party last night courtesy of a very generous gesture by Karen, discretion prevents me from telling you it was her Fifty First but she is looking good and as cheery as ever having fended off the advances of a 24yr old on Friday night. Jean faired quite well and had a jolly good time with no major side effects, but we did have to depart just after 23:00 hrs. It was good to see some old friends including shark hunting, cattle truck driving Doug who flew in from Oz, and Lynne, a friend, who has recovered remarkably well from breast cancer. Especially for Jacko who has officially complained that I don't post often enough, name that tune and artist...."And the last one I had made me cry" e z p z!
|Friday - 30/01/09||
Well we are not sure what happened on Tuesday
but Jean woke up after a Good Night's sleep and as fresh as a daisy, back to
where we were 14 days ago. She had been very depressed on Sunday and was
violently sick after dinner on Sunday evening, she had even spoken about
giving up the course of chemotherapy. So if this is the pattern and it's
really too soon to tell, it looks like one bad week and then (fingers
crossed) two good weeks. Of course we can't tell yet as there may be a
cumulative effect. No hair loss at present.
The Lymphoedema nurse is pleased with her progress and the swelling in the leg is noticeably different, mind you do you remember that chap on Tiswas that used to stick rats in his tights, well that's what Jean looks like with a pressure pad here and a pressure pad there.
|Sunday - 25/01/09||
Did you see me in the crowd? I was there
honest Guv, I think Obama was there it was difficult to tell as I was at
least a mile from the stage but it was all worth it, let's hope he makes as
much difference to the USA as 'Tony' made to the UK - then again, on
I feel sorry for the guy he's expected to save the world, not just the USA, from all manner of ills; and of course no one in the USA would dream of stitching him up would they?
Jean hasn't been too good since Tuesday, she hasn't been sleeping well, some slight sickness, her taste buds are changing and lots of pain in her rear end, and for some reason her chest. This of course has caused some consternation and upset. It's a huge change to a week ago when she was bobbling along managing he situation quite nicely. She went to see about a syrup and was quite tempted, but she hasn't committed herself to buying one yet. 1 down 7 to go.
|Tuesday - 20/01/09||
Can't stop I'm catching a flight to Washington
to be present at the inauguration.
Jean had her first dose of Taxotere yesterday, and it all went quite well; fortunately she did not feel sick. The nurses are convinced she will lose her hair, and in the grander scheme of things so what, but I do appreciate that especially for women this is a traumatic event. If she does lose her hair it should be in about 3 weeks time.
|Monday - 12/01/09||
The answer was the Faces - A Nods as Good as A
Wink, Last Orders Please - well done if you got it.
Now the serious stuff, the three wise men have looked at the scan, some slight growth in the lymph nodes in the media sternum, the main tumour appears to have grown slightly and there is some small (2mm) evidence in the lungs. They seem to be quite 'happy' given scan on scan comparisons with 4 months interval. Dr Geh is therefore following up on his earlier proposals and embarking on a course of chemotherapy which will be administered every 3 weeks. Jean starts next Monday. A scan will take place after 4 infusions to see if it is having any effect. For those interested the drug is Taxotere
The Lymphoedema treatment appears to be having some effect and the swelling is noticeably decreased, however the swelling does increase throughout the day.
Thursday - 08/01/09
"Well well hello ---- and how are you ---
fancy seeing you here" : band, album and track please, answer published next
For information about the events in 2008 see page 1