Jean Rabone and bowel cancer
If you are suffering from a similar condition to Jean you may find these notes helpful click here bcnotes
This is a continuation page from www.hagley.co.uk/jeansprogress.htm . This page covers 2008.
Merry Christmas to all our Readers!
Not a fat lot to report really, for the
most part Jean has been quite good, one or two days not so good but that is
to be expected. It depends on so many things, diet, exercise and medication.
She has just spoken to a Lymphoedema nurse and will see her on the 7th of
Jan. She appears to have said the right things to Jean and she immediately
felt that it could have been brought on by our car journey to Bournemouth.
When she discovered the number of radiotherapy shots that Jean has received
in the pelvic area she was surprised it hadn't been brought on sooner.
She has given Jean some tips on how to manage this, one of which is support
pants (favoured undergarment of Eastern European babes I believe), these
will apply pressure in the right places as opposed to the wrong places where
the pressure is being applied now. Surprisingly hot baths, from which Jean
seems to get some relief, are actually bad, warm is ok but hot is a no no.
Hoping that Christmas brings you everything you wish for and importantly
good health in 2009 - Steve and Jean X
An MRI scan is being arranged for the 7th of Jan with another diagnosis on the 12th.
It was Friday the 7th of December 2007 that Jean was called back to the surgery as there were some worrying indicators in her blood sample, so this has now been going 'knowingly' on for 12 months, and what a year it has been in more ways than one.
I can only hope that 2009 brings better luck to all of us!
I get the impression that this condition results in heavy swelling rather than slight swelling. Jeans leg was measured and compared to her right leg and there was a 1cm difference in circumfrence, up to 2 cm appears to be ok. But, and this is the important thing, with a Lympoedema the skin will not depress - the lymph nodes are blocked and so there is nowhere for the fluid to go, whereas if its some other sort of edema the skin will depress and Jean's quite clearly does.
Is this a good thing?, well at this moment in time most of the health professionals seem to think that it is, on the negative side we are not sure what is causing it. I personally think that the car travel was a factor, but it could be a growing node putting pressure on a blood vessel. Anyway Jean is relatively positive, elevating the foot resulted in some slight reduction in swelling so we shall persevere.
Hoorahhhhh I can spend spend spend next
week and save 2.5% on all Vatable purchases, that means I should save 21p on
Jean's Christmas present. Hey she's lucky I'm spending a tenner, I only
normally spend a fiver!
Good news though he has examined Jean and says that he can not detect any change in size of the tumour, so that's good. He is suggesting a scan in January.
Regarding the second opinion, the family friend, a doctor, that suggested this has since consulted an eminent Professor, he has advised that given the history, Jean is already in the best hands and travelling to either of the aforementioned places is unlikely to attain any benefit. Contrary to what we have read in newspapers etc. he has says that treatment in Britain is some of the best in the world.
There were some Eastern European 'babes' working in the hotel but strangely they were nothing like the photographs of 'babes' that are normally sent to me which accompany marriage proposals.
A second opinion has been suggested by a good friend of mine, and sort of encouraged by Jean's GP, but where to go and who to see is difficult. Amongst the suggestions are Marseilles (France) and Rochester (USA), getting there would be another story. It's not that we don't have faith in the existing team it's just that we appear to be waiting for bad news to come steaming over the hill rather than doing something about it.
As you will all know I am deeply saddened that the US presidential elections are over and they won't be back for another 2 years, providing there is no assassination. I suppose I could watch the BBC re runs and pretend I don't know the result; no worries "I'm an X Celebrity on Ice up the Jungle" starts soon, again (yawn). At least I could influence that result!
Does anyone know of a small island going cheap where I could get away from all of this? - must have excellent medical facilities, good weather etc. etc.
I say isn't this US presidential election exciting, I wish it happened more often. I'm really sad it will all be over soon.
Hello there – yes it is me – in the absence of any new and exciting developments I just thought I would say hello and, once again, thank you for taking the trouble to visit my blog. Life is pretty tame at the moment. I am just being monitored every 2 weeks to see what my uninvited guest is up to. We are hoping things are going to stay stable for a while but, who knows, I’m not known for lack of drama these days! My next appointment is 3rd November with the lovely Dr Geh so I will try to keep out of trouble until then. Hopefully he won’t feel the need to get his partner in crime, Mr Radley, involved with his cutlery set!
It was our 21st
Anniversary last Friday – we celebrated with a Chinese takeaway at Jo and
Geoff’s in Pedmore which was lovely, unfortunately just staying out until
10pm took it's toll on me the next day. We ordered far too much as usual and
Steve – never one to waste things - spent the next 2 days eating the
remainder in various forms. Surprisingly he is still alive!
There is a possibility of more chemo-radiotherapy but there is only so much that can be delivered and Jean is very close to the limit. Furthermore if radiotherapy were delivered and then APR became necessary it could compromise the healing of the wound. The tumour has grown slightly since the last examination (22/09/08) and this concerns them, they are currently advising a watch and wait strategy with fortnightly examinations so they can dive in should the tumour grow to such a size where it causes problems and APR would either be a must or impossible. They are going away to consider other options: drugs; ablation; etc.
For those that are interested contrary to what I would have expected, we were advised that removal of the primary tumour does not stop the spread of the cancer.
Jean is still mentally upbeat and is off for some aromatherapy today courtesy of the NHS/Kemp hospice.
I'm off to watch Obama vs McCain (NOT!)
I guess most of you are worried about the financial situation and what would happen to your cash if the banks went belly up, the limit as it stands today only being £50k per institution. There are only so many bank accounts you can open!
I personally am worried about the presidential elections, what worries me is why the BBC think I am interested in them, I can't influence them (none of us can) so why is it rammed down my throat every night? What a waste of beepin time.
I'm still being pestered by Eastern European babes and it looks more of a tempter each day. Its strange I don't think I have ever seen an attractive Russian man - well I suppose the bloke who owns Chelsea FC looks quite attractive when you know his bank balance - is there a female equivalent of beer goggles when you know how much a man is worth?
What a beeeping beep thing !!!!
Monday will be the Biggy. (Again). I know it's has been said before but this time the results/prognosis are really important.
Expect the Worst - Hope for the Best!
Not the news we wanted, the Sigmoidoscopy was inconclusive, there is a nodule which has been 'biopsied'. To speed things up another MRI scan and another PET scan have been arranged. A major operation has been mentioned but is NOT certain, hence the scans. As you can imagine Jean is in bits, apologies if you get me if you call.
Jean's 50th Birthday
For those people that did send cards, flowers and gifts a huge thank you. I think it cheered her up I can't tell she wailed every time she opened another card.
We visited the new consultant on Friday, Mr Simon Radley, he said the right things to Jean, including the fact that he could not detect a tumour in the buttock, and she came away reasonably cheered up. Then on Friday evening she went down hill waking me up several times to tell me she was scared, then getting cross with me when I dropped off. Saturday was bad, my parents visited and she wailed all the way through (I can understand that), she can't help it she is just so emotional, anything can set her off.
The current plan is CT scan on Wednesday the 17th, flexible Sigmoidoscopy on Monday the 22nd, at which time the analysis of the scan will be delivered to us. As ever keeping everything crossed.
Last Friday was a shocker Jean was suicidal very very depressed, then Saturday and Sunday were very good in relative terms, we even managed to visit Touchwood for 45 minutes. Then it happened, Jean was asked to visit Dr Geh on Monday and explained her concerns to him.
He carried out a physical examination and reported that he could feel 'some thickening' which could be down to scarring from the radiotherapy, but just in case he is arranging another consultant to have a look with a scope.
For the next couple of hours Jean was that famous Irishman Phil O'Sophical then she cracked, partially my fault as she thought I had been involved in a traffic accident when in actual fact I was next door talking to our neighbour.
Tuesday was just horrendous Jean was more upset and distressed than I have seen her for a very long time. Coincidentally Ruth was visiting so she did pick up towards the end of the day.
She's ok at the moment having taken more medication but she is wholly convinced the tumour is back and not only that there is another tumour which is affecting her buttocks and legs. I hope she is wrong
At the moment Jean is up and down, Saturday was a shocker, Sunday was ok, Monday was relatively good, and today we are heading back down.
As yet we have no news on a rearranged appointment. Thanks for all your concern and support.
Well since my last
posting we have had something of a roller coaster ride, relatively speaking
Jean had a good day on Bank Holiday Monday her energy levels were on the up
and some small indications that the anaemia might be improving, but has gone
down hill since in a big way.
Some of this is physical but a huge proportion is mental.
She has been experiencing some worrying side effects which cause her to be
convinced the original tumour is making a come back and this is trashing
her.
I have waited 48 hours before posting this part as I wondered whether my
judgement had been clouded but it hasn’t. You can see from my last post Ruth
the Macmillan nurse, who Jean gets along with very well, was to arrange for
their consultant to visit, their consultant fundamentally deals with the
symptoms of treatment as opposed to the oncologist (Dr Geh) who deals with
the treatment. Ruth called on Tuesday to advise that the whereabouts of the
aforementioned incoming consultant were unclear and so she was going to get
the current consultant to visit. On arrival he was privy to some of Jeans
medical history and over 20 minutes gleaned some further information from
us, after which time he asked Jean if she thought she was cured and secondly
if she thought she would ever be cured. Jean said she didn’t think she was
cured because of some of her physical symptoms, which in turn was what was
causing a lot of the mental problems, and secondly that Dr Geh had never
talked about cure only control.
This guy then proceeded to tell Jean in no uncertain terms that the tumour
was still there, it was going to kill her and her days were numbered. He
stopped short of telling Jean how long she had left as at the moment ‘she
looked so well’! The guy almost seemed to delight in imparting this news and
in my view was vindictive, particularly as whilst Jean was out of the room
he had enquired of me how she was handling it mentally, and I had given him
a truthful answer, on her return it was as if he had decided to twist the
knife.
He may well prove to be right but nobody who is sick and recovering from a
terminal illness wants to hear news delivered in such a callous way. Jean
bless her, became visibly upset and I wasn’t far away, but she managed to
compose herself and recover.
She has since dismissed this man as a 'prize chump' or words to that affect,
but clearly it has affected her mental state, and it is not something that
you can easily forget.
A number of people have said report him, we won’t be doing that, but what he
did was morally wrong and in my experience the antithesis of the good work
that Macmillan do.
We have a call in to Dr Geh to try and bring the scan forward in an attempt
to allay Jean's fears.
Jean has seen some marginal improvement over the week, Monday was a shocker but as the week has gone on, we appear to be back on an even keel, still lots of discomfort lots of lying around but its timing is predictable and that in itself helps.
Went to the GPs yesterday and he is reasonably happy with what's going on, back to see him in 3 weeks. Ruth the Macmillan nurse is going to arrange a visit to their consultant who deals in the side/after affects of treatment. Jean is simply counting the days to the next scan/consult in mid September, and is confident it will be bad news. I'm simply counting the very wet days quackone, quacktwo, quackthree.......
Jean has been in quite a bit of discomfort and unable to do much at all. We did have a little respite on Friday Jean managed to feel quite good and took herself off into the village.
This might not seem like much to most of us but it is a big step for her. We seem to be unable to comprehend what causes the pain, its weird that it can be there most of the time and then just simply disappear. The doctors are still saying that its consistent with radiotherapy treatment. In some people it will last for weeks in others it can least for years.
If it only it would disappear more than it appears, that would be a different story!
Meanwhile back in the Bat Cave..... things are still the same, lots of pain, lots of time to let your mind work overtime and quite a few tears.
Jean is officially signed off sick at least until early September, just prior to the next CT scan. She would like to return to work at least part time, but both physically and mentally it's just too much. If we could just stop the physical then it would have a huge effect on the mental side of things.
Hope you are all enjoying the British Summer Weather!!!
Jean has left out the sleeping tablets for the past 3 nights, but for 2 of the 3 nights has had very little sleep, consequently today she feels very drained and is currently flat out in bed drifting in and out of sleep.
To some people it may seem that this has been dragging on for an awfully long time, it has, but what we need to remember is that her last bout of treatment finished on the 24th of June that's 6 weeks ago and in chemoradiotherapy terms that is no time at all. Combine this with the other 2 treatments she has received and it is a wonder the poor girl is as well as she is.
For the medically minded her weight is steady and her appetite, for some foods, is good. Her tastes and eating habits have changed. We know she is anaemic, this partially explains the lack of energy, and have been advised that a blood transfusion may be the only way to get over this. One of our friends has advised a special drink for women.
"To infinity and beyond!"
The bad news is that the lower back and buttock pain are proving to be a damn nuisance. Jean can't sit or lie down without experiencing difficulties and likewise standing is not that much better. This prevents us from doing so much, even short journeys in the car are painful, and I couldn't tell you the last time we even watched a TV programme together in the lounge. Both of Jean's 'relapses' have occurred after she has been sitting for a comparatively short while, 2 hours.
This has caused more discontent and resulted in a visit to Dr Heywood last Friday. We have reverted back to Diclofenac and moved away from the Naproxen which was causing bad tummy ache; which is ironic as I have recently noticed this latter drug being advertised on the TV for period pain!
Mentally this is all becoming a bit too much for Jean and she could really do with some respite from the pain in order that she gets back on an even keel.
Unbelievably it is now more than 8 months since Jean was called back to the surgery as something was amiss. Lets hope that one day soon we can say it has all been worth it.
She was discharged early evening so spent last night at home, she had a reasonable nights sleep but is still experiencing some pain in the lower back and buttocks which causes difficulty in sitting or lying for any length of time. Her GP has advised that this is all consistent with the radiotherapy treatment.
On Tuesday Jean goes in for the stent removal/replacement. She should be in for 24 hours.
Now the Bad News - she has been absolutely dreadful since. She spent all day Friday in bed, exhausted in pain and as a result depressed. Things barely improved on Saturday and Saturday night was a shocker. Despite taking a sleeping tablet and her regular pain killers she had bad pain in her buttocks and legs and could not get to sleep. More tears more depression, she is still convinced the original treatment did not work. I have suggested an independent Sigmoidoscopy or a scan; at least it would be confirmation one way or the other, otherwise I think we are going to have this anguish until September.
Ruth, the Macmillan nurse, previously advised that she felt that this was the worst period, she appears to be right.
Since my last posting I have had several proposals of marriage mainly from Eastern European women, who seem to think I have a lingerie business. They all profess their undying love and say they want to come to this country to meet me as I am a Good English man, who can help them lead a better life. Strangely they are all young, absolutely stunning and university educated.
Jean is still of the opinion that it is not a good idea - "Just replying to a few emails dear"
A return to work at the moment is not just out of the question its impossible, she can't sit for much more than 15 minutes and even after 15 minutes she is in trouble.
I have offered to go away on my own so she can have some respite from me but she doesn't seem to think this is a good idea - not sure why? Mind you I would have to brush up on my chat up lines the last one I had any success with was "Would you like some silk stockings fraulein?"
Whether it's time, diet (i.e. the energy drinks), or drugs we can't say, and to be honest I don't care, but the plan seems to be coming together.
Jean and I have walked between the showers to the village for the last 3 days to get a little exercise, Jean went to the local garden centre with Sally yesterday and came back with this hat (see pics to the left and below). Too soon to get excited but I am pleased to be bringing comparatively good news.
For info regarding burns, her pelvic burns from Jan/Feb are still deeply discoloured.
She still has an upset tummy but we think this is due to the antibiotics.
No news on the stent removal/replacement yet.
"Just checking my emails dear!"
The joint medical opinion appears to be that one of the stents had become partially blocked (the urine crystallises obstructing the tube) and this in turn had probably caused pressure on the kidney, subsequently the stent had unblocked causing some blood in the urine but relieving the pain. Up until this point I have not been wholly convinced about the wisdom of private medical care; I think today's experience probably goes a long way to justifying it, as I doubt we would have had such a rapid and comprehensive response from the NHS.
Since Wednesday night Jean has been a lot better but is still drained, she of course expects to be up and at it and its just not happening, but apart from these minor setbacks she is improving steadily day by day. Her 'burn' in the neck area has now started to peel revealing new pink flesh.
She is now taking high energy drinks to restore some of her fat, sorry formerly svelte (or should that be asphalt) like figure. Well you didn't seriously think I was going to fork out on a complete new wardrobe did you?, and BUPA doesn't stretch to replacement clothing!
"Of course dear, on my way!"
Enjoy the weekend if you can, the weather is supposed to be dreadful.
Hopefully one day we will be able to look back at this treatment and say it was all worth it! On the positive side the radiotherapy 'burn' appears to be subsiding and hasn't caused anything like the grief of the original treatment to the pelvic area. Sadly her ability to dish out orders has not been diminished! "Just coming dear!"
I would like to report that we are going out to celebrate but that won't be the case for a couple of weeks yet.
At this stage Jean is showing a small amount of discolouration around the neck but on past experience we think that this could intensify over the next week. Her suntan is camouflaging most of the 'burn' but the Biafine (thanks Deb) really does seem to be doing its job.
She has lost some weight and she does have some minor concern, putting it back on in the right places being one of them!
Her taste buds appear to be recovering slowly and, all in all, she's not doing too badly. The abdo pain still remains the biggest problem, that and the effects of radiotherapy which can be very draining. Yesterday and most of the weekend she was confined to bed for most of the day.
Back to Dr Geh on Monday the 30th for a follow up.
So 15 down and 2 to go; Jean was panicking that today's session would be cancelled and we would have to extend by a day, but fortunately she was zapped but 2 hours late. To be fair to the QE, in a total of 40 zaps so far I think this is only the second major delay Jean has had. In the meantime we went to see Dr Geh who is very happy with the progress and advised that the aforementioned CT scan is also showing a reduction in the Lymph nodes and remember that the CT scan was over 10 days ago. So that's more good news this week; lets hope we keep going in that direction. Have a good weekend.
Looking on the internet there doesn't appear to be a definitive answer as to how long this could last. Some of her mouth/taste symptoms are being caused by the chemo and some by the radiotherapy, because of where it is clipping. Estimates on recovery of taste range from 6 - 8 weeks to one poor chap who still had problems 11 years afterwards. Apparently some people never recover.
It's good stuff this chemoradiotherapy I would recommend it if your fed up sticking pins in your eyes!
The abdo pain is still there and has not altered, the natural assumption is that it is related but of course it could be some other ailment.
Jean had a CT scan on the 11th but we do not have the results as yet, this was to review the liver ablation.
Good news 2 days off before we go again.
The bad news is that now she is home she is on to me, why haven't you done this, when are you going to do that, bring me this, fetch me that. Oh I have missed her (NOT!), I wished I had taken the opportunity when we were on board ship, "what splash? I didn't hear one"
The guys were still working on the path!, but there is a correction it does have 22 slabs not 16.
Spoke to Jean at 08:30 they managed to get the anti sickness medicine right and she slept ok through to about 06:00, reasonably jolly.
On arrival we requested the room she had on her first visit as she can watch the world go by. She is keeping her eye on the builders laying a 16 slab path, 5 men took all day Monday, apparently there are now 8 men looking at it and have been doing so for the past 1 and a half hours, and all this is supervised by someone we know - sounds like a good use of public funds!!!
btw the curtains have been changed see below 21/01/08.
Firstly the good news we had a good holiday and for the most part Jean was pleased for the break, and our travelling companions Chris and Sue were very understanding.
Unfortunately before we went away Jean was experiencing some pains in her abdomen, the skin being very sensitive to touch (almost like shingles) but there was nothing visible, and we consulted a few people before we went, all of whom were baffled. There is still nothing visible but the discomfort has intensified, none of the pills we have will touch the pain, and as so many times before this clearly causes consternation and tears.
Consequently, and Jean can not believe this herself, she is looking forward to going into hospital tomorrow, in the hope that they can get to the bottom of this and sort something out. Of course we are all hoping we are on the final leg and this is the beginning of the end of Jeans 6 month battle. How time flies when your having fun!!
We are off on a break for a few days and hopefully Jean will be able to focus on other things. Clearly the upcoming treatment is of concern and not knowing how the existing treatment has gone can also cause big worries. Throughout the past 5 months Jean has tried to be positive and because of her upbringing put on a brave face and get back to work. We still both feel that this was the right thing to do BUT physically the body is not ready for it, and what was entirely possible 12 months ago puts a strain on the body today. We don't feel that this has caused any setbacks, but it is frustrating for Jean and can cause aches and pains which in turn start the mind racing.
Hope you all have a good Spring Break and we hope to post some jolly pics of Jean climbing the rock wall (not), or diving off the back of the ship assisted by me, when we are 200 miles out at sea!
This is me now (Jean) - I am going to wear my life vest the whole time just in case!
Thanks for all being such wonderful friends - it is lovely to know you still think of us after 5 months of this nonsense. Hopefully I am on the home strait (straight?) now regarding treatment - even so life is good, husband is the best, and I'm looking forward to getting off the medical roundabout for a while!
Dr Geh is fairly confident, he has revised his treatment and is now planning 17 zaps of Radiotherapy with the first week spent in hospital for the chemo. This is planned to start on Monday the 2nd of June.
In theory the burns should not be so bad this time, and fortunately they are not in such a sensitive position, but because of its position it could upset the bowel and cause some discolouration on the neck. Hopefully our previous experiences will help.
Better still when the 2 plasters were removed there were no holes or scars, we were expecting something to show for Jeans troubles but the entry wounds are extremely difficult to detect. Well done Dr Roy-Choudhury and team.
So physically Jean appears good, mentally she is still wobbly, as we would expect, and the next lot of treatment can't come soon enough.
We visit Dr Geh on Monday then we think a CT scan on Tuesday for 'alignment/specification' of the next dose of chemoradiotherapy.
Jean feels a little tender, something like a couple of rounds with Miss Piggy; she says it is as if someone has punched her in the shoulder and kicked her in the stomach, but she is quite chirpy, eating and drinking as normal. She's in bed at present waiting for the dreaded flu like symptoms to manifest themselves.
I guess most of us feel as if Jean has been through the worst and things are getting better, I hope we are right but I'm issuing a 'health warning' here. The ablation is next week and this will be closely followed by 15 shots of combined chemoradiotherapy. The thought of either of these treatments would be enough to upset if not 'destroy' most people, and I'm not sure it will be over even then. Dr Roy-Choudhury has already advised that by committing to this treatment then you need to have regular CT scans at 1, 3, 7 and 12 months. As some of you may know who have experienced cancer first hand CT results can be testing and traumatic times.
On the positive side Jean feels and looks quite well. Her strength is building steadily, she is eating well and gaining some weight. She still has one or two minor problems in the pelvic area and we know that whilst externally she has healed well she is still repairing internally.
The paraaortic lymph nodes are still the same size. The lesions in the liver have grown; one is now about 2 cm which we thought was large but Dr Geh is not too phased. Consequently Jean will have a PET scan this week to confirm the CT scan, then Dr Geh and his colleagues will decide whether to treat the liver or the lymph nodes first. The lymph nodes mean more chemoradiotherapy, not so prolonged this time. He may treat the liver using Radio Frequency therapy which means inserting a probe into the liver and 'cooking' the cancer. Dr Geh is still encouraged and feels that he can beat it or control it. Back to see him next Monday after the PET scan results.
Keepin 'em crossed for next week.
His diagnosis needs to be confirmed by a CT scan and this will also show how the chemo has affected the lymph nodes and the liver. He has tentatively mentioned more radiotherapy but won't commit until we have had the CT scan. The scan should be next week and we visit him for his diagnosis on the 14th of April.
Jean continues to have the occasional 'wobble', but nothing too major. She's still finding being out of her comfort zone (the house) and away from me quite difficult, and so the couple of occasions she has returned to work have not been easy. But looking at Jean we tend to forget it's still early days and we are making progress. The next biggy, which can't come soon enough, is the CT scan which should be within 2 weeks. That will either be a huge boost or a massive blow. Lets hope it's the former.
So how did the return to work go?, well it was good and bad; Jean was only there for a couple of hours but came away feeling that she achieved something mentally and work wise, the but being that she didn't return all week.
I was only thinking on Wednesday how good Jean had been mentally, I had really expected what Jean and I refer to as a 'wobble' in this period between treatment and assessment, and it hadn't really happened, but then on Thursday and Friday we had a major wobble. Due to a couple of 'complications' Jean is convincing herself that the treatment hasn't worked and of course is very upset, nothing I seem to say can lift her from this belief, but I keep trying. Mom and Dad used to say I was very trying - is that good?
The CT scan can't come soon enough for Jean but as I have pointed out its never really over, there will always be a check up on the horizon, and the slightest twinge will cause consternation. I may be wrong but I think Jean has to accept this horrible fact and build it in to her life not treat it like a millstone. Easier said than done methinks!
Jean is attempting to go back to work today just for a couple of hours to see how she gets on. She would find it difficult to sit for any length of time at the moment. This might sound remarkable and knowing intimately what she has been through I admire her attitude. Only 2 weeks ago I didn't imagine she would return so quickly.
When we found out about Jean we drew up a 'cancer beating plan', or rather I did. I would do the same again but to be honest it was rubbish. Part of that plan was to continue going to work feeling needed and having a purpose. It very soon became clear that that was untenable, but here we are and Jean is making some positive steps without any encouragement from me, in fact I was surprised when she told me last week.
During this period of treatment other issues have been going on in the background, and the company that Jean works for has been bought out. Jean was of course a senior well respected Director at the company and until her illness was expected to play a significant part in the negotiations. We have been aware of this and clearly this major issue has impacted upon Jean in a mental rather than a physical way.
I will keep you appraised as to the effects the return to work is having.
To be honest Jean and I think he was preoccupied and under some pressure but is that an excuse?
As regards the consultation it was a waste of time. He his still quite happy with Jeans progress, he was quite dismissive of Jeans burns. He did bring up some uncomfortable facts (see original notes) for Jean and she needed some consoling on the way home. We go back and see him on March the 31st, at which time he says he will arrange a CT scan for a couple of weeks later.
Having said all of that Jean is much improved, quite upbeat but she does get weary as the day progresses.
The nurse was quite happy with what she could see, she has returned again today, taken a urine sample and a swab of the wound but she is just making sure. She is as confident as she can be that there is no infection. She figures that within a couple of days things will be much better burn wise.
We visit Dr Geh on Monday. Jean says she's "going to punch his lights out" for not warning her that this could happen.
Tuesday - 04/03/08
We weren't sure but something was disagreeing with Jean either the after effects of the treatment, the anti-inflammatory drugs or the antibiotic drugs; so she stopped taken them and just took Loperamide (Imodium) and co-codamol (codeine). This seemed to calm things down quite considerably and Monday turned out to be quite uneventful in comparison.
We also seem to be heading in the right direction today, with one 'minor' setback but were tackling that. Visibly the inflammation is subsiding, decency laws prevent me from publishing the pictures here, but not something you would wish on any woman or man for that matter; packs of frozen vegetables have proven to be very handy.
Physically, other than dashing to the loo, she hasn't been out of bed for 11 days now.
Mentally for the most part Jean is on an even keel, she does have her odd moments, but I have to remind her how "lucky" she has been and how bad things are for some poor souls we have read about.
The Macmillan nurse pays her first visit tomorrow afternoon.
It' still very early days and whilst the chemoradiotherapy delivery may have stopped it is still having an affect and is likely to do so for a number of weeks.
Jean has lost some weight, about half a stone since the treatment started. I guess we would expect some change in weight either positive or negative but in view of Jean's diet and diarrhoea we don't feel that this is too drastic.
One step at a time.
Well, hello to any lovely souls who have been kind enough to stay in touch with my exploits over the last few weeks.
I must thank you all for all your kindness to me and for the moral support for Steve – poor man. I don’t think he signed up for this but he has come up trumps.
Saturday was a bit weird, Sunday I felt fab and could do everything …uh oh not so fast methinks….. so today I have taken it steady and, starting to feel a bit more normal.
I have an appointment with my consultant in 2 weeks time so it is up to me now to keep the mental state positive and help build the body back up. The mental attitude is the hard bit but, hey, after all the support you have given me it is my duty to put some effort in and conquer this – so here goes!
All my love
and thanks.
Jean
XXXXXX
Jean will try and compose something herself in the next couple of days.
Dr Geh has visited everyday this week and is quite happy with what is going on.
Meanwhile back at the ranch I'm washing, ironing, and cooking - no change there then. At least I'm having a break from the 'creosoting'!
Different room this time smaller but adequate and on the plus side the curtains are the same length!
Dr Geh has been to visit Jean, quite pleased with the way things are progressing and doesn't feel she should get much more burning (let's hope so).
Thankfully Jean improved markedly (mentally) as the day went on.
Thanks to everyone for their kind thoughts, words, cards and flowers.
Things are quite positive, unfortunately the skin has succumbed and broken down but the nurses and the doctor are quite optimistic and say they have seen much much worse.
Gentian Violet needs to be applied twice a day, whilst Jean bends over and touches her toes. It gets everywhere and stains everything a violet colour, I therefore propose to carry out the application of the GV in the back garden wearing a 'miners helmet' equipped with torch, a yellow plastic apron, purple latex gloves and a creosote brush, oh yes and a peg on my nose if I have to get that close!
Unfortunately Steve dosed off this week whilst Jean was being zapped, next thing he knew Kevin the porter had taken him back to the ward!
Thanks to all who have pledged to Shirley.
On a lighter note, they play music when you are being zapped. Today, as Jean's bum was being lined up, Dancing Cheek to Cheek was playing. Jean pointed this out to the radiotherapists which caused much merriment and they had to start all over again.
Lets
hope they don't have Johnny Cash and Ring of Fire next week!!!
Tuesday - 05/02/08
The tummy has improved somewhat now that we have been provided with a diet sheet - better late than never.
Tomorrow is 13/25 so were half way there!
You get chatting to people whilst you wait for the radiotherapy, today a lady asked me (Steve) how many treatments I was having!
Thursday - 24/01/08
She's looking forward to coming home and being with me - blimey that chemo must be bad!
The chemo goes like this - Cisplatin over 4 hours, 5FU over 24 hours, so at times there will be 2 lines in, with Radiotherapy delivered at the same time.
Jean slept ok, breakfast was good, Dr Geh has visited and is quite confident about the tumour. At the moment Jeans biggest complaint is the curtains - one is a good 9 inches longer than the other. One of the nurses advised she was lucky they were matching!
Hello to anyone who is still visiting me,
I just thought, after the effort poor Steve has put into creating this page; I ought to pay it a visit if only to thank everyone for your kind thoughts. I have received some lovely cards and letters sending me so much warmth and comfort.
Well, Monday is the big day – I’m off to the QE to commence ‘the fixing process’ – at last. I’m sure by lunchtime I’ll be wondering why on earth I was so keen to get going!
Anyone who lives locally should keep an eye out for Wooster because he’s not very bright and has an uncanny knack of annoying Steve – I’m a little worried for his health (Wooster not Steve) while I’m away.
I believe Steve has put some photos on my page – I do hope he has chosen well, preferably about 10 years ago would do since one or two lines etc have developed in recent years and there will be absolutely no photos available from Christmas 2007 for the foreseeable future (at least not without a bag over my head anyway).
Well, this is just a big, big thank you to everyone who has been so kind and I can only try to be as strong and positive as you all think I am able. (Don’t tell anyone but I’m a total chicken on the quiet)
See you all soon
Jean
XX
Jean has tried to continue at work, we originally both thought it was a good thing, but she feels 'safest' at home, and has found it quite disconcerting at work being unable to concentrate fully. Consequently she does not intend to return before the treatment but will do some work remotely from home.
I have to say that I was of the opinion that there is no right answer, but I am coming round to Jean's way of thinking that what has been conveyed to Jean is wrong. Wrong in the sense that positive thought is recognised as a big factor in the fight, and yet since the 18th of December she has basically been told that things are very bad, consequently she finds it difficult to have positive thoughts.
Her opinion is that she should have been given 'some' information, told of the treatment, had the treatment, and then advised of the state of play. A couple of comments that have been made to her have had a massive negative effect. Is there a right answer? I don't know, but as Jean says what has been done can't be undone, and she has lost the last 4 weeks to despair and effectively is suffering from stress, something she experienced about 12 years ago when one of her work colleagues died.
Other cancer sufferers seem to have been allocated a counsellor immediately to help them come to terms with their situation. We have met Jeans counsellor once, on the day she was on the radiotherapy simulator, for approximately 2 minutes, and it wasn't that satisfactory.
I've suggested doing all sorts of nice things, but she doesn't want to do them. She feels that if we do them now there's only one reason we are doing them, and that's because she wont be able to do them in the future, which of course upsets her. Whatever happens in the next few months there is no doubt that our lives will never be the same again.
Jean
started off quite cheery, GFR test (glomerular filtration rate); arrive at Priory 9:30
injected with creatinine (I think), then blood tests at 11:30, 12:30 and
13:30. This tests the kidney function and the ability to remove the toxins
delivered by the chemotherapy. So we hope the tests prove satisfactory.
She became quite weary in the evening and with the weariness comes
tearfulness.
In theory we have a bit of a break now before the treatment starts on the
21st, but I think this could be a long 10 days for Jean
Jean visited the oncologist Dr Ian Geh at the Priory, on Monday the 7th of January. To cut a long story short the news was pretty much as we had expected – not good but he is hopeful.
The PET scan had confirmed the previous diagnosis i.e. the rectal Tumour which was described as aggressive, lesions in the liver which were described as very small and the paraaortic lymph nodes which are serious - more later. For location of these nodes see Paraaortic_lymph_node
For the technical the Cancer is described as Grade 4, the highest, and on the TNM scale T3, N3, M1. For more info see this TNM
Consequently he advised that the diagnosis was not quite as hopeful as
originally thought however he does have a plan. Dr Geh specialises in a
combination treatment of Chemo and Radiation therapy. The plan is therefore
an intensive 5 week treatment of Radiotherapy, plus intensive Chemo in the
first and last weeks, at which time Jean will receive 2 types of Chemo.
Fluorouracil
Cisplatin
Because of the way the Chemo is delivered this will mean that Jean will have to stay in hospital, the Queen Elizabeth in a Private Ward. Clearly Chemo can have many side affects some of which may manifest themselves, I won’t go into them here.
The Radiotherapy is likely to lead to some soreness in week 3 this would be like sunburn with peeling and scabbing. Recovery should take 7-10 days.
This treatment will largely only deal with the tumour, hopefully the Chemo will attack the lesions in the liver and may attack the paraaortic lymph nodes. Another PET scan will be needed after the 5 week treatment to ascertain how these other ‘organs’ have reacted at which time additional treatment may be required. He may possibly try radiotherapy on the lymph nodes. He is confident about treatment in the pelvic area, far less confident about the lymph nodes and liver.
He advised his colleagues would probably describe the paraaortic lymph nodes as inoperable, and thus terminal but he is hopeful and ‘wiling to give it a go’.
Jean asked if he was aware of anyone else with the same symptoms and he advised he had treated a 70 year old woman with a larger tumour and more liver infection 3 years ago and she was doing well.
Jean is to be measured up for the Radiotherapy treatment on Tuesday and at some time will have to have a test to ensure her Kidney function is up to the treatment.
Dr Geh hopes to start treatment on Monday the 21st of January.
Jean is reasonably positive having been convinced that this was terminal, but of course is concerned about the intensive treatment she is about to receive.
First of all my apologies for being a wuss, ideally I would like to have done this by telephone but I am sure that you will appreciate why I haven’t.
As some of you may know for some weeks Jean has been experiencing some back pain, a visit to the Doctors early in December and a subsequent blood test has resulted in a number of scans and investigations, and unfortunately on Tuesday the 18th of December Jean was diagnosed with Bowel Cancer. The back pain is being caused by a 3cm ‘mass’ pressing on the ureter, the tube from the kidney to the bladder. Clearly this has come as something of an unwelcome shock to us both, but especially to Jean and Christmas has been a difficult and tearful time.
Whilst we are still waiting for a full diagnosis/prognosis/treatment regime, there appears to be no doubt from some of the serious expressions we have seen, that the cancer is beyond the early stages (there are 4 recognised stages of cancer). To date she has had a Sigmoidoscopy (a camera up your bum), an Ultra Sound Scan, a CT scan and an MRI scan.
Today we are off for a PET scan (an injection with radioactive glucose), this should identify how far advanced the cancer is. Analysis of these scans can take up to 2 weeks, so more waiting, although having said that the treatment that Jean has received thus far has been very quick, a lot has happened in just over 3 weeks at a difficult time of the year.
We already know that the cancer is beyond the pelvic region, there is some evidence in the periaortic lymph nodes (Paraaortic lymph node) and there are possibly some lesions in the liver.
In order to try and alleviate the back pain and preserve the kidney function 2 stents have been fitted into the ureters which should prevent them from being compressed. These were fitted internally at the Priory hospital last Friday.
At this point in time the Consultant Surgeon who has handled Jean thus far, believes that this type of cancer is unusual and responds well to Chemo Radio Therapy (CRT) and would expect a 3 month intensive course. At this point no surgery is expected but the situation could change, depending on how the areas outside of the pelvic region respond to the Chemotherapy.
Jean has now been passed to a specialist in this field hence the additional tests.
At the moment whilst Jean is uncomfortable and ill she is not an invalid and is trying to carry on as normal, although I am sure that you will appreciate that this is hard.
Her biggest problem at the moment is not knowing, and she fears the worst. The time between consultations seems interminable and the slightest twinge in a different place can cause Jean’s mood to drop right down.
We have waited until now to give you this information as we did not want to affect your Christmas and New Year. At one time we intended to bluff it out over Christmas but Jean felt that she would crack on Christmas Day whilst our relatives were with us.
I am sure that you all want to express your feelings in some way but can I just say we are running out of vases, a nice card would be more than appreciated.
Because she is uncomfortable she has times when all she wants to do is lie down, hopefully this will pass, but we are sure that there are more uncomfortable times ahead, so she may or may not answer the phone, apologies in advance if you get me.
I’ll try and keep you informed of any developments. I have suggested to Jean she has a web site this would give her some ‘purpose’, would keep everyone informed and may possibly help other people who experience similar problems; but she feels it is too indulgent.
Sorry to bring you such bad news so early in 2008, but we both wish everybody all the very best for 2008; and please keep your fingers crossed on Jean’s behalf.
Steve
