Decision Made!!!!!!

Ok...

Last night I spoke with my son Keith and my daughter Roxanne, they both told me that I had to do what I beleived was right for me, and they would support me in that.
My mother and husband said the same.

My cousins, Jeanie and Sandra said that I should have the treatment because there was a chance, but they would support me in any decision that I made. They said that I still had such a lot to give.

 I was on the way to work today, when I reached a roundabout close to work, I saw the most beautiful sunrise.
The sky was the most wonderful colours of reds, oranges, yellows and pale blues. I looked and enjoyed, but had no real profound thoughts, but I was in awe.

A little later I the morning, I took a walk around the outside of the building. It was cold, but the sun was shining and the fresh snow looked beautiful,

My brother phoned me and said that he would come and give me a 'slap' if I didn't have the treatment.
He also told me that he was used to having a sister, and didn't want to loose her.

This is quite a long story........we have only just found each other, I say only just, it's been about 11 years now. I will explain it all in a later blog.

I went to see my line manager,  In another part of the City. When I got out of the car at head office, it was crisp, cold and sunny. It made me want to take a deep breath and linger a while.

We thrashed out the options and odds. By this time I think that I had pretty much made my mind up.
He said that I had a 'life force', cant remember the exact words, but my interpretation was that I was a bit like a force of nature. (I like that, lol). Powerful, unpredictable and unstopable.
Even if it wasn't what he meant, It made me feel strong.

I went to see Jo in HR.
He said, " I have only known you for 4 years, and if I was a cancer in your body, I would be bloody scared!"

My brother phoned again to re-inforce how he felt.

My nephew left a comment on the blog, (you can go and read it).
His words have helped with my decision.

Anyway, the long and the short is that I have decided to have the treatment.

3rd Dec At work now (Sorry Boss, if you are reading!)

Well, There was hardly any traffic, the only real issue was some poor soul had their car stranded on the inside lane just before jct 10, I think it was.
My heart went out to them.
It was very cold and very foggy.
Until I got to 100-200 yards away from work all was well. The roads close to work are very dangerous, as I mentioned earlier, there is no gritting going on there.
What I am trying to say, is that I didn't really get my usual 'thinking time'.
So in the immortal words of Winnie the Pooh,
"Think think, think think......'

3rd Dec 05.52hrs

Slept like a brick all night, the alarm forced me from my slumber.
I had a quick look in the back garden, and there doesn't seem to be much, if any change in the landscape, so hopefully the drive to work wont be any more nerve racking than earlier this week.

I need to make my decision quicky, because if I choose to have the treatment, I need to take next week off to insure that I don't come into contact with any people who have colds etc., because the treatment will have to be postponed if I get one.

I am off to take my tempreature, have a coffee, shower and head for the M6. Hopefully, I will make a firm decision on the way to work.

Catch you later!

Ok....The questions and Answers.

I would like to say that the staff at Newcross hospital in the Deansley centre were fabulous!

I really pressed the Oncologist to give me the following information.
I would like to say that the following answers are professional opinions based on reasearch and experience, and nothing is carved in stone or written in blood!!!!!

Q. Will I have Chemo and Radiotherapy together?
A. No
     First you will have chemotherapy. 3x3 weekly cycles. You will be have 2 types of Chemo at the same time. Etoposide and Cisplatin. (EP/PE). These will be administered by drip and orally. This will take place over 3 days each week.
The serious or frequently occuring risks are:-
Nausea
Vomitting
Diarrhoea
Constipation with painful bowel movement.
Lethary/fatigue
Aemia
Bruising
Bleeding
Damaged kidneys
Damage to hearing
Damage to nerves to the ends of fingers and toes causing numbness.
Hair loss
Lower resistance to infection.
Sore mouth and ulcers with unpleasant substances.
It will effect all fast growing cells in the body, not only the cancerous ones causing high risk to infection.
Taste changes.
Skin changes.
Allergic reations.
Blood clots.
Some of the above may be fatal.
May cause a second cancer to erupt in later life, usually a type of leukaemia, although this is rare.
See
macmillan.org.uk
for further information.

Q Is there more than a 50% chance that the treatment will prolong my life?
A 30% - 70% chance.

Q Can I get trasnsport to and from the hospital?
A Yes.

Q What would my life expectancy be without treatment?
A The type of cancer that you have is rare. Even in these rare cases, the cancer has been found in the lungs, not the vagina. I can only comment on the prognosis if it was in the lungs. This would be 12 - 24 months.

Q When would the radiotherapy commence?
A When the chemo is finished, you will start radiotherapy. This will be daily for 28 days.
This has a whole new set of risks and side effects that we will discuss when the time comes.

There will be reguar MRI scans to follow progress.

Q If you couldn't see anything on the CT scan, how will you know if there has been an improvement?
A Any cancer has to have a minimum of 10,00000000 cells to be picked up on the scans. The scan will monitor differences in the images.

I would like to say that getting all of the side effects is unlikey but possible.

My interpretation of all of the above is:-

If I have the treatment
There is a 50% chance that I will die within 24 months after spending 6 months being quite poorly.
By default, there is a 50% chance that I will live a normal life after 6 months of being quite poorly.
The question is...do I want to spend a minimum of 25% of the rest of my life being quite poorly.
If I don't have the treartment
There doesn't seem to be much difference to me. My head is spinning, I can't think any more. I'll have to sleep on it........

Your comments and views would be gratfully received!

Ooooo, I almost forgot.
I have to take my tempreature twic daily staring now to find what my usual tempreature is, the when the chemo starts, I have to continue. If there is a raise in my temp. I have to alert the hospital immediately as this is most likely the first sign of infection.
I also have to alert the hospital if I notice any lumps, bumps which are painful which may be blood clots.

And yes, you guessed, it is still snowing, and seems to be settling.

2nd Dec

I have seen the Oncologist, and now I need time to think. Before I share with you all, I want to speak to my family.
All the details will be coming up later today.
Oh, and it is snowing again. lol

2nd December 06.55hrs in Wolverhampton

Some of my family and friends have said that they couldn't post comments, so I have altered the settings so that anyone and everyone can comment...(well, at least I think that I have,this is my first sucessful attempt at blogging!)
Not a lot to say this morning, I have mixed feelings of excitment, fear, apprhension, maybe a bit of 'bloody mindedness' - then again,............me?.......... Bloody minded?......... Naw, never! lol.
I have started my list of questions, I need to go over them and make sure that I haven't missed any thing.
Oh, by the way, snow still out there, but there doesn't seem to be any more than when I went to bed last night. Can't miss my bit on the weather, I'm English!!

1st Dec - Back home

Whooohoo, my appointment with the oncologist has come through.
I need to see her at 10.00 tomorrow.
I am feeling very nervous.
I need to base my decision on all that she says, and mix it with the info that I already have.
I will compile a list of questions, and tomorrow when I have seen her, I will 'blog' all the questions with the answers like last ime.

Snowing quite hard on the way home today. Looks like that it is going to settle......
Not so far to drive in the snow tomorrow then.

1.12.10 at work

I hope that I get a letter today from the Oncologist, because until I speak to her, I don't know what I am doing, I can't make plans. I feel as if I am in limbo.....
With the Seasonal holidays coming up, I would like to make a couple of plans, or at least know if I can.
I have been invited to go to my cousin's on New Years Day, I would love to go, but can I?
Although I think that I have made my mind up about treatment etc., until I have spoken with the Oncologist, I can't make a firm decision.
I am keeping everything crossed in the hope of getting my appointment in the post today.
With regards to the University Hospital in Texas....not a dickie bird.

1st Dec

Pinch and a punch, first of the month, White Rabbit!
Or something like that anyway.
As yesterday morning really.
I will be glad when the appointment letter comes for the Oncologist, although, I feel that things will happen on 'the hurry up' after that, If I choose to have the treatment.
Still snowing...Urgh!

Back home 29.11.10

Going to work was better than I expected, as I said earlier, but coming back was interesting.
The snow was settling on the lanes of the M6, Northbound between jct.7 and jct.8!
Snowed all the way untill I reached M54. Then, only a couple of flakes.
Anyway, back to the original topic,
I spoke before of a distinctive smell, well, I hadn't noticed it for a while, but this morning it was quite strong.
I seem to be the only one that can smell it though.
Catch you tomorrow.

At work now (Sorry Boss, if you are reading!)

Well, this morning's 'Eeeek' was much a do about nothing. Tra la!!!
No problems at all until I was about 100 yards or so away from work. The road there is a bit hairy, and unless the snow/slush disappears, it will become compacted like last year and become an ice rink.
Well, 'Suck it up', I hear you say lol!
Have a good day!

30th November EEEEEK!

Snow! not alot, but snow never the less.
I love to walk in it, play in it and look at it......but drive in it....I hate it, it scares me. O.K. there isn't a lot, and I will manage to drive to work, but I am not looking forward to it.
The things that worries me most are.....will there be more, so it is very difficult to get home, and where I work, the roads leading to it don't get gritted and it is very slippery and often dangerous when it snows.
So, I am off for my shower, and then I will brace myself for the glorious M6 in the snow.

29th November, back home

Ooooooooo, I have had a headache that would kill 2 men all day....
I don't usually get headaches, but then, I imagine that it is a bit of tension.
Didn't complete everything that I wanted to today, but hey ho, another day tomorrow.

29th Nov

Feeling fine, the only thing that I am concerned about this morning is travelling to work, it isn't snowing, but it is cold, miserable and icy.
I think that I was a bear in a previous life, I can't stand the cold, and all I want to do is hibernate.
Driving in the snow scares me, so I hope that we don't get any.
So......shower and the M6 for me now.
Have a good day!

28th Nov

Good Morning!
Feeling good. Still feeling tired though. I have a rash on my back, but I think that it is a nervous thing. When I asked about it,  I was told that there is no evidence to suggest that it is connected.
When I wake in the mornings there is a 'different' smell about me. It isn't unpleasant, just not my usual smell.
There is no documented evidence that it is related, however, I was told that many people with cancer have told their 'keyworker/nurse' that they can smell their cancer.
Again, this is probably nothing to be concerned with.
Have a good day...I intend to!

27th Nov

Hi again,
I have just read through the blog and I have noticed that I have made some spelling errors and that I have repeated myself, but then I decided that those who are interested will work their way through it, and those who aren't won't notice it, because they won't read it, so I'm not that worried.
Anyway, in one of the earlier blogs, I said that the hardest thing was no one wanted to mention it at home....well, since then my husband has read it and started to talk, well, he kept telling me I was wrong to feel this way, wrong to make this decision, wrong to do this that and the other, all that made me want to do was to hit him on the nose....SO......I have realised that what I want is someone to look interested in what I have to say, nod in the right places and be quiet!

By the way, I am writing this regular blog because the litreature from the hospital said that it would be a good idea because it may help others in a similar situation. I hope that someone out there is getting something from it.

Confessions of a cancer patient: 26th Nov

Confessions of a cancer patient: 26th Nov: "Thinking time on the M6....... After having time to think about the discussions with the consultant on Monday, I phoned today to ask ques..."

Exciting!

There is a university in Texas that has done some research on neuro endocrine small cell carsanoma, and I emailed them to see if they have any further information on it. So, now, I will wait and see what happens.

26th Nov

Thinking time on the M6.......

After having time to think about the discussions with the consultant on Monday, I phoned today to ask questions. I asked for absolute honesty. I wanted to make sure that I hadn't misinterpreted anything.

Questions and answers as follows:-

Q          How certain are you that I still have cancer at the original site?

A          No certainty. But very high probability that the primary is in the ‘bartholomew’ gland based on research on documented cases. (Not sure I got name of gland right! Lol)

Q          How certain are you that I have cancerous cells floating in my blood stream?

A          No certainty, but high probability because of evidence in blood vessels to and from removed tumour.

Q          What is your professional opinion of my life expectancy with treatment, assuming that I have cancer?

A          Don’t know because it is that rare that we have nothing to benchmark it against.

Q          What is your professional opinion of my life expectancy without treatment, assuming that I have cancer?

A          Same as above.

Q          For arguments sake, I have cancer and prognosis is better with treatment, what are the benefits of going private?

A          Same Oncologist working with you either way, it wouldn’t be done quicker. Radiotherapy will have to take place in Newcross hospital anyway, because that is where the machine is.

Q          How long will I be in hospital each day receiving my treatment.

A          Depends, Chemo, all day, Radio about 2 hours, both together all day.

Q          Can I drive there and back.

A          Unlikely, will be very sore below with radio, will be sleepy and feel generally unwell, same for chemo, but probably not have sore ‘bits’ if treatments are consecutive, have the lot if simultaneous.

Q          The literature on the treatments list many unpleasant side effects, how many on average will I get.

A          Unlikely that you will get all of them at once, but depends on what therapy, how intense, both together, separately etc, most, half, some…don’t know.

Well, depending on what the Oncologist says, I think that with the above info, I don't think that I will bother with the treatment.

As I said, I will wait and see what the Oncologist says.

26th November

The first time ever....I had to be woken up to get ready for work. I feel very tired.
I feel well, still very positive, but I would love to go back to bed.
Shower and back on the wonderful M6!