Re: Playing catch up

[Guest guest]

>

>

>

> In a message dated 11/30/2005 9:39:16 A.M. Eastern Standard Time,

> seamist32000@y... writes:

>

> He is determined to be as normal as possible and was out

> chainsawing logs yesterday much to the horror of my neighbour. As

he

> says, when he does feel good he wants to make the most of it and

I

> wouldn't wish to stop him.

>

>

> That is awesome, Fran...yes, I agree, let him be as normal as he

possibly

> can. Will help make both of you feel more relaxed and keeps you

and hubby in

> control at least part of the time and NOT the Cancer!!!

>

> Donelle

> Caregiver to Glenn

Yes Donelle, it does seem important to try to keep that cancer in

its place. I really enjoyed the fact that he was out there doing

those logs because I knew he was having fun! He does seem strong

after the surgery and so far it is only the chemo days and a few

after when he feels rough. Long may that continue!

I hope Glenn is comfortable today. I have just seen the picture of

his arm and I can see how he must hurt with those sores. Love to him

for some peace from that itching and to you for all that you do.

Fran

[Guest guest]

>

> From the very beginning of this little journey in my life I've

done everything myself. I've driven to all doctor appointments, all

scans, all chemo, all by myself. The only time I had company was

when I went in knowing there would be sedation, then had to be sure

I had to have someone drive me home. I think if I couldn't do those

things, I'd feel much, much worse. As long as I can take care of

myself independently, I'm still winning. I know that may change at

some point in the future, but I'm really just fierce about it right

now.

Hi ,

I am the same kind of person myself so I can understand that. Most

of the tests and treatments I have done in the past I have tended to

do alone. Matt says he was glad to have me there to just get to

grips with the whole thing but now he knows " what is what " he is

happy to do his own thing. He also had real trouble remembering to

ask questions and could also not remember what the doctor had said.

So for that time it was right to be a double act. Maybe it is

different in the US but here in the UK one is not allowed to drive

for 6 weeks post abdominal surgery so that kind of forces a certain

dependency for a while.

>

> The other reason is that I just don't want anybody to have to

sit and wait through the long waits I encounter. It's really not

the fault of the clinic, they do the best they can with what they

have, but they have an overwhelming number of patients who don't

have any insurance and have no other alternative.

Matt is at the hospital for 4 1/2 hours on his treatment day and

generally another 2 for the pump removal. We don't have private

medical care ourselves so the treatment is with our wonderful

National Health Service. This does mean good care for rich or poor

but it is always of necessity very busy.

>

> As long as he feels like doing whatever it is, let him,

encourage him. At least that's my perspective on things. Hopefully

when he feels like he needs some help, he'll be smart enough to tell

you that. However, knowing how men are, don't hold your breath on

that one...lol

>

>

Yes I agree with your perspective completely. I have to keep my eyes

and ears open though because as you accurately suggested he won't

say when he needs help. Listening out for the language is my best

clue! LOL!

Take care and thanks for writing,

Fran

[Guest guest]

Fran, It sounds like Matt is tolerating the chemo pretty good. I know

his infusions are lengthy and you mentioned that he only takes water

with him. At my chemo they used to supply drinks. Pop, water, Boost,

whatever you wanted. I would suggest packing him a light lunch. It is

a long day and he really should be eating something. I usually ate

while getting my infusions. It is very important to try to keep

eating. Perhaps a sandwich or salad. Anything that might entice him

to eat.

As for the sore mouth, that is quite common. He can use Biotin

mouth wash that would help relief this. I asked the chemo nurses and

they gave me samples. If the chemo place does have samples (most do)

you should ask. I mean chemo is expensive enough and those samples

are usually supplied by the drug companies.

I also could not tolerate regular toothpaste anymore. My mouth got

so sore that the pepper mint or whatever in the toothpaste burned my

mouth. They have a Biotine toothpaste available. I just started using

my son's childrens toothpaste (bubblegum flavor) Tasted good and did

not burn my mouth. Also make sure he has a soft toothbrush so he does

not irritate his gums.

If you find any side effects that are bothering Matt just post

them. So often someone here has a suggestion that worked for them.

I love everyone here and they have been so helpful. Matt will get a

clear scan next year. With all Praying it will happen. Love, Ingrid

> >

> > Fran, I am sending up a Prayer for Matt to have an easy go round

> with

> > the chemo. Yes, It will make hime tired.

> > I drove myself to all my chemo's. It was an hour drive for me

> each

> > way. So do not worry so much. The chemo effects usually hit me

> after

> > the chemo session was over for that week. If Matt is like me at

> all

> > it is very important to try to make as normal as a life as

> possible.

> > This awful cancer robs us of so much that it is important to be

> able

> > to function and try to be normal.

> > Just watch Matt so he does not try to over do it. From my own

> > experience it will catch up with him and you always end up paying

> for

> > it. If he needs to learn this the hard way like I did then let

> him.

> > Chemo will get harder on him the more he gets into the chemo. It

> does

> > weaken you more each time. At least it did me. Now everyone is

> > different so he may not.

> > I will keep him in my Prayers. Sending up an extra prayer for

> you

> > too.

> > Love, Ingrid

>

> Thank you Ingrid both for your prayers and wise words. It is

> difficult with weeks carved up by so many appointments trying to

> keep the normality going. However, feeling independent and capable

> is obviously a part of that. Another part is getting people around

> us to let us " forget " about the cancer sometimes, not so easy! It

> does all come out of kindness though.

>

> Matt has an hour to the hospital too. We couldn't live further from

> a hospital in our area if we tried! Just goes to show the choices

> one makes when the family are in good health-when living rurally

> seems like a great idea! He was okay the other day actually; better

> prepared, he had taken warm clothing and a bottle of mineral water

> to drink during his infusion.

>

> Matt's worst symptom as far as he is concerned is a very sharp pain

> in his jaw when he begins to eat. It does go away after the first

> mouthful but naturally puts him off eating rather. Hot drinks

> (thanks to Len for that advice) seem to be the best thing he can

> tolerate. Otherwise he has had a sore mouth, oral thrush and

> oesophagitis as a result of the chemotherapy. These things are now

> all being relieved by additonal medicines and some diet changes.

The

> tiredness is only really hitting him now on Day 3 so he will have a

> sleep this afternoon when he gets back from having the pump removed.

>

> He has by and large learned the value of pacing himself, he doesn't

> really restrict what he does but more the length of time he does it

> for. The concept of taking a rest in the day was foreign to Matt

but

> he now realises how much better he feels for it. Makes life easier

> for all of us as the children found the grumpiness hard to bear.

>

> I am so glad you had such clear results from your tests Ingrid, I

> dream of Matt getting the same next year.

>

> Blessings'

> Fran

>

[Guest guest]

Hi, Fran. Sorry I am so long in answering your message. Ten days ago Sam had a

horrible day in pain, because his radiation was still affecting him. But the

days since then have been getting better and better. Good luck to Matt in his

upcoming treatments. You and your family have a wonderful Christmas and a Happy

New Year! ~Deb from KS

seamist32000 wrote:

Hi Deb,

This treatment has gone reasonably well so far, Matt has the pump

taken off today. 2 down and 10 to go. Probably shouldn't count down

but it is hard not to!

I am so glad for you both that Sam has finished his treatments. I hope

that his painful areas will heal now as quickly as possible. Also all

that toing and froing to the hospital must have been exhausting, Sam

can use his energy for getting strong again now. Not easy to put it

behind you I know (sorry, many figures of speech don't work so well

now!) but try to let go and have a lovely Winter and Christmas.

Blessings,

Fran

>

> Hello, Fran. Glad to see that Matt is doing well. My Sam drove

himself

> to all his chemo and radiation treatments. I thought he would cave

in

> and ask someone to take him, but he stuck it out. Hopefully Matt

will

> be able to do it as long as he can. It is something that they can do

> to take control of the situation. Good luck with the next treatment.

> ~Deb from KS

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