1

(16 replies, posted in In Remembrance)

My dear husband Ron Smith passed away peacefully at home on Wednesday 28 October 2009. Our son and I will miss him greatly. We would like to thank everyone on the forum for all the support received during his illness.

Margaret and Blair Smith

2

(45 replies, posted in General Discussion)

This has been a strange day.  I have slept a lot, 2 hours or so after every attempt at eating.  Get up again and shine for about an hour, then need to go back to bed.  OK, my body clock is way out of kilter, but it is disconcerting.  Anyway, went to bed for "normal sleep" and thought I could do without sleeping pill and codeine .  Big mistake as I suddenly became wide awake.  Chest became quite tight so hardly had any oxygen and was convinced that this was to be the last episode in my life!  Got up around midnight and immediately felt better and then took my meds.  Must have fallen asleep sitting upright and when I woke chest and breathing pretty good and slacker.  So trying the same again.  Anything to get through another night.

I can see that this is not helped by the lung mets, although Beatson do not think it is too bad.  My thought is that I need to get oxygen from NHS.  Speak to GP about it next week.

Hope this does not cause fear and dread.  All I can say is that when I did wake up I felt really refreshed, relaxed and a bit more positive again.

Take care

Ron

PS.  I never realised how refreshing Baby Wipes are.  Personal views and preferences change dramatically.

3

(8 replies, posted in General Discussion)

Wendy

That is excellent news for you.  I am so pleased.  Take all and any positives when they come your way.  Why give any part of this sucker the feeling it is winning?

Be assured, those of us who have been on the road for a while do gain  from hearing good news, although, to be totally honest, there can be a wee bit of jealously, which lasts no time.  After all, we are not the sucker, but we are just human.

Take care
Ron

4

(11 replies, posted in Members' Cafe)

Bazel

I have to confess that some of the contents of sausage are not that appealing to me.  But, most N European cultures exist in lower temperatures so waste of anything is discouraged.  Particularly food.  So if most of the earlier settlers in N America were of N European stock, it is not surprising that this outlook was also brought over.  So, things like haggis, soups etc entered the everyday lifestyle and would be adapted as people married.

That's a bit deep for a subject like haggis pizza!!!

So temperatures are still at 100 degrees?  We are half of that.  Where would I rather be?  I'll think about it.

Take care

Ron

5

(11 replies, posted in Members' Cafe)

Marion, I'm sure we discussed haggis with our old pal, Jeff, But I found this site that may be helpful.  The truth is that it is almost always bought from the butcher and they have their own "tweeks" to the recipe.

This may be helpful:

http://www.scotlands-enchanting-kingdom … ients.html


You are correct in that we normally have very fine foods, having the best of fruits, fish, domestic and game animals and birds.  Gavin will know all about the fruit and berries. 

This site tells about neeps and tatties and some of the better fare:

http://www.foodiesite.com/recipes/2001-01:haggis

Take care
Ron

6

(11 replies, posted in Members' Cafe)

Last night I had for my supper, wait for it!!!,  wait for it!!!!


Haggis Pizza


It combines everything a Scotsman strives for - traditional (haggis) and the exotic  (pizza).  Now, if they could only incorporate the boiled neeps and tatties.  I am sure Scottish invention will overcome.

What's that?  Was it good?  Well, no.  Actually it was rotten, but I did eat it and that is a great step forward.  It was store bought, so no slur on Margaret's cooking.

Take care

Ron

7

(7 replies, posted in General Discussion)

Michelle

So sorry to be reading what appears to be all round negative news about your dad.  But nobody knows how he will react when he gets home.  It may be that some of the intense pressure he must be under is lifted and this helps him, even a little.

The docs, particularly the GPs also have a hard time in the treatment of cc.   The introduction of one medication can suddenly start a problem with another area or organ.   For example, I have bad water retention and it is proving difficult to remove that.  At the same time I have a poor appetite so am being given appetite enhancers that create more fluids!  It becomes a balance.

I do hope that dad is able to pick himself up since that is one knock-on effect everyone would enjoy.

All the best

Ron

8

(45 replies, posted in General Discussion)

Great - cheers when I left LOL!

Well Marion we managed an enjoyable chat.  The big test will be if it works next time.

9

(45 replies, posted in General Discussion)

Marion and all.
My probems with the chat room are:

I'm shy, so would worry that the only person there would be someone I don't really know well.  so "chat" would be a bit stilted.

I can't determine when I am going to be in the room, so arranged chats are a bit dodgy.

I am not a good typist, so, how good do I have to be?

How does time difference affect this?  The UK is 5 hours ahead of the Eastern US seaboard but 8\9 hours ahead of the West.


Ron

10

(45 replies, posted in General Discussion)

Marion

Just imagine a big, squarish, box, that is larger than the volume of it's contents.  Ignore thoughts of eye-candy.  Honest


I'll let Gavin guide you through the food area, but a Swede is a small white turnip.

Kris

I assume you will stick to the west coast when you return to Scotland.  There is nothing much wrong with  the Ferry if you want to be near Dundee!


Take care

Ron

11

(45 replies, posted in General Discussion)

Marion

To be honest, I think I was the model for the box.

Ron

12

(45 replies, posted in General Discussion)

Curiously, I have started to take cinnamon breakfast cereal.  I think in the States it was called Grahams, then Curiously Grahams but here now, it is just Curiously Cinnamon.   Not having it for breakfast but as a very early morning snack.  I know that in Florida everything is served with cinnamon, so perhaps I am trying to re-live enjoyable times, but, hey, who cares if it works?  And I have decided, no matter what happens, I am not destined to re-capture my fat-free, muscle-bound physique again so live with it and enjoy these little treats.  What a load of havers!  I was never muscle-bound!!


Take care y'all.

Ron

13

(17 replies, posted in General Discussion)

Kris

I find that pains and discomfort come and go.  Pain meds seem to work, nothing too heavy yet.  What do your docs say?

14

(45 replies, posted in General Discussion)

Gavin

Just the thought of a fish supper, with vinegar and brown sauce is so appealing, then I manage a tiny bit and the rest is wasted.  Breaks my heart.

It's to be cold next week but dry.  That's important for us just now because we are having our roof re-tiled.  It seems to take forever and of course, we are surrounded by scaffolding.  I can't even get out of the house.  What is really annoying is that the roof was completely renewed less than 12 years ago.

How's your dad these days?  Is he still as tired?

Take care

Ron

15

(45 replies, posted in General Discussion)

Valjee

At risk of denting all the wood,  the Fluconazole does seem to be working, and pretty quickly.  One benefit is that the suspension actually tastes nice.

4:00 am - I was awake but had enjoyed a much better sleep beforehand and I can now eat and DRINK!  Hooray!

Went back to bed and slept some more.  Body clock must be changing.

All the best.

Ron

16

(6 replies, posted in Introductions!)

Theresa..


Welcome to our familiy of friends, each of whom shares a common and strong bond.  Rest assured this is a close familiy and you will receive support, answers learned from experience, hugs, if you need them and some realism if you may need that!

You are facing one of the hardest question that carers or family have to face,  especially where it concerns older parents.  Of course you do not want them to go and there are very succesful examples if you care to spend time lookink at our families stories.  It is natural that you wish your MIL to live as long and as well as possible.  It is one of our mantras to ensure that we receive as many opinions as possible.  Think less about the doctor and more about the patient.  Why did the surgeon not advocate surgery?  Lack of experience or better knowledge?

Anyway, the one thing to be careful of is "what do you want?"  It is too easy to assume that you will know best.  Everyone must listen to the advice and ONLY THEN can the patient make the final choice.

Good luck to you all and try to keep in touch with us.

Ron

17

(45 replies, posted in General Discussion)

Thanks for all your kind thoughts.  To be fair, the GP surgery is very attentive to my needs and I have been prescribed Diflucan Suspension (Fluconazole).  I take 5ml per day and it seems to be having an effect (Touch wood, any wood will do!).

Kris there is no way I am going to intentionally do ANYTHING to make you cross.  I am just happy to wind you up a bit.

Had a short sleep this afternoon and will try to stay awake now until night time.

Keep positive everyone.

Ron

Adam

If it is any help then I can say that my surgeries went very well and I recovered quickly.  There again, I am a lot younger than your father and my other health problems did not surface until after the surgery.  After the 2nd one I was more reticent about the possibility of a 3rd, but ended up almost begging the surgeon, but to no avail.

Remember, everyone else can offer advice, but it is only your father who can decide what he should do.  Listen to him.  I have certainly found the chemo to be the harder option.

Good luck with whatever road is chosen.

Ron

kctasty2004

Nobody has all the answers.  We can never even be sure if we have made the correct decision.  It feels as if you are beating yourself up because you gave your opinion on treatment at the time it was required.  Nobody can do better, not even the experts.  You can only be guided by the best information you have available.

I have had 2 episodes of surgery to try to cure this cancer but both "failed".  Or, put it another way, they were not complete successes.  Were my decisions wrong?  I don't think so because without the surgeries I may not be here.

Your mother has had a shorter, possibly harder, time.  Was the surgery wrong?  Nobody knows what the alternative would have been like.

Best wishes

Ron

20

(17 replies, posted in Members' Cafe)

OK Kris, let's be realistic.  Firstly, the secret is out about the bottle colouring so no need for further coyness there.  If the hair is getting thin then think about the practicalities.  Sweden is NOT the warmest country on the globe.  It is important for you to keep warm.  Obviously, there are hats but are they practical 24/7?  In your situation I would be looking toward good quality wigs.  Think what 2 or 3 of them would do to that personality of yours.

Personally, I opted to become a 58  year old skinhead.  Too tight with the cash and long in the tooth to care about appearance, to concern myself with expensive wigs.  But I think we may be different in every score there!

Ron

21

(45 replies, posted in General Discussion)

This has been a particulary bad couple of nights.  Not because of pain, not even much in the way of discomfort.  I just cannot get to sleep.  It is currently 4:35 am and I have just finished a long e-mail to a former business colleague, but I am still not tired.

As many of you will know, I suffer from ailments, other than CC, and they keep being added to.  The problem, as far as the docs is concerned is that  to treat one will probably have an affect on another.  So I have fluid in the lung and the only relief comes from draining that lung regularly.  They stick largish needles into my back. under local, in order to insert the draining tubes.  This is fine and does not hurt, but eventually I have to take pain-killers. (keep that in mind for a minute).  My lower extremities are very bad with fluid and the diurectics are not really working.  The pain-killers cause constipation that just adds to the discomfort at my waist, making the fluid seem worse.  Appetite is poor and so I have steroids to improve that.  But they cause water retention!!  Latest thing is very bad Thrush in my mouth.  This makes the mouth so very dry, but I cannot find anything to alleviate the thirst.  I was never a drinker but seeing someone on the telly downing a long. cold, beer to quash a thirst is really hard to take, when I know that it will taste of salty water to me.

So, here I am, composing this at 4:55 am, still not tired, hungry or thirsty.

What meassage am I trying to get over?  Well, remember, very few of us has only one symptom, and each may affect the other.  Our carers may have several problems, but, by and large, they will successfully hide them.  No matter how bad you may be feeling just now, things can improve, so look forward to the better days.  Finally, if you are able to reply to this, or send your own thoughts, you are still here fighting.  The alternative is not so appealing.


Best wishes to all.

Ron

22

(13 replies, posted in Introductions!)

Mary's son
Welcome to our small company, but, as everyone will tell you, it is not one any of us wishes to join.  It is not an easy path which your mother is on and what she will need is good family and professional support.  You will find in many cases that the professionals will learn as they go on. Try not to think too badly of this since it is not a well known cancer with established  procedures.

As for immediate advise, it is difficult to advise since you do not give much information.  Try to make sure that her current hospital has relevant experience in treating this cancer,  Don't be affraid to ask for further opinions from other surgons.  Be realistic about her age and general health,  Chemotherapy is a poison that you are feeding into the body, in the hope of killing a worse poison.  It very rarely has no bad effect.  It is a balaning act, not a cure.  It may help prolong her life and make her more comfortable.  It may be you cannot ask for much more than this.

Gemcitabine is regarded as one of the chemos with fewer side-effects and it has been shown to have some positive effects, but it can still make her feel nauseaus and tired.  That is when the family support is important.

Try the Search facility at the top of the page, enter Gemcitabine in the Search and you should find personal experiences of the effects of using Gemcitabine being described.

Whatever happens - good luck to you and your Mom.

All the very best

Ron

Valjee

I found that this is a situation where it is useful to rely on the statistics.  Your doctors will have these to hand and will be able to quote them to the DWP.  From memory, in order to be fast tracked to higher rates DLA your condition is likely to be terminal within 6 months, but, of course, there is no need for this event to actually happen. 

It is similar with the pensions and insurances and any related premium waivers, although the time scale tends to be 12 months.  But each policy will either allow the claim or not, depending on how it was set up originally.  As they say "hindsight is a wonderful thing". 

I have found this a very useful site and a good link:

http://www.direct.gov.uk/en/DisabledPeo … /index.htm

Of course at the end of the day, the decision to claim is your own and you may feel you would much rather keep things as normal and get back to work and enjoy your hobbies as soon as possible.  But it is good to be forearmed with information.

Good luck

Ron

Valjee

Just a small point - the free NHS prescriptions, from April 2009, only apply to England.  Scotland Wales and Northern Ireland introduce or intrduced free prescriptions for all at different times.  Scottish charges have been reduced for the last 2 years and will be free from 2010.  My main requirement for drugs relates to Angina  so the earlier reduction and pre-payments were good news.  However, it is now good news all round, in a "Catch 22 "situation!!  I'd much rather be paying for my normal 1 or 2 prescriptios per annum that I used to need.

On a slightly different note, I assume you are aware of other benefits you may be entiled to due to your condition, such as Incapacity benefit, Attendance Allowance, Disability Living Allowance, free travel concessions (busp pas etc).  These are also age related but there is plenty of info on Government web sites.

You may also be able to access the full capiatal value of any private pension funds or life assurance funds due to the condition's terminal nature.  This will depend on the terms and conditions, but well worth looking at.  The mony is better being ing your pocket than the insurance company.  If this does not apply, you can check your policies to see if you qualify for Premium Waiver Benefit, when the insurer will pay your monthly premiums on rour behalf.  Again, this is due to your condition and is certified by your doctors.


All the best

Ron

25

(29 replies, posted in Introductions!)

Melonhead
I'm a bit disappointed that there has been no response to your query about massive swelling in the lower part of the body.  I have the same problem that has been ongoing for a few months, but is getting worse.  It started with my feet and ankles  and has steadily progressed to the genitals.  My GP has been prescribing diuretics, increasing the doseage but having little effect.  My oncologist thought it may be either a blood clot or the tumour restricting the main vein through the liver, both cases causing fluid not to run freely in (I think) the lymph glands.  I had a CT scan to look at this and although there is some restriction, it would not cause the swelling I am experiencing.  So I am no further forward!

It may be coincidence, but I also suffer from fluid on the lung.  This causes breathlessness and a really bad cough.  Because the lung doesn't reinflate properly it cannot be repaired permanently when the fluid has been drained.  So the lung fills up again within a week or two.

Any thoughts on the lower swellings will be appreciated.