Jean Rabone and bowel cancer
If you are suffering from a similar condition to Jean you may find these notes helpful click here bcnotes
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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"
Steve
X
If your new to this page, you may
want to start at the bottom and work up - no pun intended!
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.
Steve X
Jean
Hanson 1958 - 2009
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
She received a lot of support from the following and donations to any one of
the three would be much appreciated.
| Kemp Hospice | Macmillan Nurses | Mary Stevens Hospice |
| 01562 861217 | 01384 443010 | |
| 41 Mason Road | 221 Hagley Road | |
| Kidderminster | Oldswinford | |
| Worcestershire | Stourbridge | |
| DY11 6AG | West Midlands, DY8 2JR | |
| donate to Kemp | donate to Macmillan | donate to Mary Stevens |
I hope that you can join us after the service at The French Hen, Bromsgrove Road, Clent, Stourbridge, DY9 9PY
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.
Please pop back for information about the arrangements.
I would request that you do not send flowers at this stage, and I will
probably request donations rather than flowers at the funeral.
Clearly I have a lot to think about in the next few days.
Thanks to everyone for their support over the past 24 months.
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.
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.
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.
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.
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.
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.
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.
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.
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'.
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.
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.
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.
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.
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!
I’ve been
reading Steve’s 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 – 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 he’s keeping his head down as best he can.
I’m not sure if this is an age thing with Steve – he has now reached the
grand old age of 54 and, boy, was he grumpy on his birthday although he was
slightly cheered by his favourite tea – gammon and chips!
Having said all that – Steve is a fab husband and I wouldn’t change him for
the World (well, maybe just a little bit)!
Thanks for continuing to visit us after all this time.
Jean
XX
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.
'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.
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.
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.
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.
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.
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.
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.
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!
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.
And there was me thinking I was having some peace and quiet for a few days, that's scuppered my fun!
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)
Enjoy the weekend, its supposed to be a wet one.
Jean is resolute, accustomed to the idea and looking forward to being away from me for a few days.
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 – so she can’t sit.
Taking anti-depressants, sleeping pills, and pain killers.
Had Cystitis.
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!
We managed a couple of hours at Sue's birthday bash on Sunday afternoon
which was lovely and took my mind of myself for a change.
Thanks for tuning in after all this time.
Jean
XXXX
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.
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.
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.
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.
The song is credited to Simon and Garfunkel and the station is accredited as Widnes.
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.
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.
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!
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.
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.
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.
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
Casley-Smith.
The Prevention of
Lymphoedema: General Do's and Dont's
Benzo-pyrone Drugs
How Can
Lymphoedema be Treated?
Best of luck
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.
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
wouldn’t believe what happened. By the way nice to see some of you there;
those disguises didn’t have me fooled!
So I’m trying to get close to Barack, I’m wrapped up with a scarf around my
face to keep warm and just in case I had the hood up on my jacket, and
because of the blasted sun is so low in the sky I have my sunglasses on, I'm
sure you get the picture. As usual some Eastern European babe clocks me and
starts following me like a lost puppy, so what happens a nice policeman asks
her what she is doing, she replies in some foreign language, and I think she
said "Baracks! He wanna see Obama", but on reflection I think the
policeman heard "Bo11ocks! He wanna be a Bomber"; so he looks at me, can’t see the white of my eyes because of my
sunglasses and next thing I know I’m in the back of the paddy wagon with
some really smelly geezers. I reckon that guy Swampy was in there; it
certainly smelled like it. They are all on their cell phones to their
lawyers complaining about globalisation, and if they had ever paid taxes
they wouldn't want them spent like this, and what Fred the Shred had done to
their Giro was nobody's business. Furthermore their inheritance from their
parents was now likely to be half of what it would have been. And all I was
trying to do was say hi to Barack.
Jean's leg has been quite swollen, but the nurse has managed to get some of
the swelling to decrease. She's been told off and told to take it easy.
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.
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 ;-)
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?
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.
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?
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.
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.
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.
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!
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.
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.
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.
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.
"Well well hello ---- and how are you ---
fancy seeing you here" : band, album and track please, answer published next
posting
Well we both hope you enjoyed the festive break. For both Jean and I we like
the concept of Christmas but each year it seems disappointing, god knows
what we are expecting. On the plus side some of our friends from
Christchurch came up to see us, which was good, and we spent a couple of
pleasant days with them.
For the most part Jean has been reasonably well, we have had some ups and
downs with one or two emotional episodes over Christmas.
The Lymphoedema has been something of a problem and a concern to Jean. It
really blew up at my Brother's wedding on the weekend of the 3rd of Jan
where these pictures were taken, btw I don't always dress like this although
I do have a fondness for Bret Maverick played by James Garner. Shame because
other than this problem Jean had a Cracking Good Time Grommit. Come to think
of it she does look a bit like Wallace and further more she demolished a
plate of cheese at the 'evening do'. eeeeek
Jean went to see a specialist nurse on Wednesday and she has advised that it
definitely is Lymphoedema and further more she thinks that the pressure that
Jean has been describing in her buttocks, that which causes problems in
sitting, is also Lymphoedema. Jean identified this Last May!
We also had the scan on Wednesday Dr Roy-Choudhury wasn't there so we will
get the official diagnosis late next Monday. Fingers well crossed!
For information about the events in 2008 see page 1