9th Feb - day 15 of 3rd chemo cycle

Aaaarrrrgggggghhhhhh!!!!!!
I think that we have gremlins!

I can't turn the shower on because the turny thing is too stiff...have to use a monkey wrench!.....(plumber coming out to sort that),
And now, the hot water and heating keeps going off!!!!

The little light on the boiler keeps flashing on and off!!!!!!!

Oh, and I do like my little luxuries...hot and cold running water, heating and shower!

Hiss, snarl, hiss, snarl, spit nails, spit nails!

Ahhhhh, that's better, now that I have had my little rant!!!!!

Not really a lot to report today.........
Have got sinusitis, tinnitus, tire easily..................
Concentration and eye sight still a bit of an issue...........
Still peeing for England.........
Oh, and a new one.....my nose wont stop running.

Of course, I could just have a cold, but I NEVER have a cold, and I don't get sick!

(Cancer doesn't count as a sickness, a bit like breaking a bone, that isn't sickness, nor is pregnancy, you know what I mean,,,)

All in all, not bad at all!

I know that this is going to sound weird......

But I love not having any hair!

No washing and blow drying, no spiking, saves time and money on hair products!
It is so practical!

I am having a lot of fun with my head gear, there is so much that I can do!
Different colours, different styles, loads of hats!

8th Feb - day 14 of 3rd chemo cycle.

As you know, I went to the hospital to discuss radiotherapy yesterday, and I have decided to proceed with the treatment.
I start on 21st Feb.
The last day should be 1st April.

I would imagine that I start the next 3 x 3 cycles of chemo.....that should take me to about 3rd June.
One day after my 56th birthday.
Then.........I WILL BE FIXED!
Yaaay!

I hope that the radiotherapy has an additional 'up side', and I will lose some of this horrible bloating.

Today, so far, the only side effect I have is tiredness.
That has been consistent.
Generally speaking, I fire on all cylinders from about 06.00 until about 12....then I could sleep on a clothes line!

A bit like this chap! lol!

Today, I am going to get my sewing machine fixed so that I can make some interesting head covers.
I was thinking, bells, tassels, beads, sequins, loads of colours............
My imagination is running riot!
I am on my way to achieving my life long ambition of being an eccentric older lady.....lol!

Still 7th - Questions and answers.

The questions that I put to the Oncologist.

Q.  Do you believe that the treatment that I currently under going is palliative?

A. No, we are aiming for a cure.

Q. Do you believe that completion of this treatment will afford me a 'normal' life expectancy?

A. We are trying and hoping.

Q. Based on the information available on this cancer, do you genuinely believe that this will increase my chances by more than 50%?

A. There is very little information on this type of cancer in the vagina. I believe that completing the treatment will increase your chances of survival.

The Doctors conviction and belief in what he was doing was inspiring.

We discussed things that could be put in place to combat any unpleasant side effects.

So, I have decided to continue with the treatment and place my well being in his hands and have faith in his very strong convictions.

My first radiotherapy session is on Monday 21st February, 10.15am.

When this was decided, I went in for a scan and measurements were taken.

I had to remove my clothing from the waist down.

I was placed on the 'bed' with my head towards the polo mint shaped scanner.

I had to have a dildo type object placed into the vagina and taped to my thighs.

The machine moved and jigged about.

4 points on my torso were marked with a marker pen.

These points were then marked permanently with a needle and ink.

 

These were placed as follows:-

1. Just above the hair, (or lack of) above the vagina.

2. On the right hip.

3. On the left hip.

4. 2" above the navel.

I am feeling quietly confident that all will be well.

RIGHT! Now I mean business!!!!!

7th Feb - Day 13 of 3rd chemo cycle - Info from internet on this cancer.

It was great having Keith here, he left yesterday, late morning.

I will be spending next week end with Roxanne an my Mum in Wales.
We are checking out potential venues for her wedding!!!
I am so excited!

OK, you are probably going to think that I am not being positive......NOT TRUE!
I just want to be sure that if my life is going to be shorter than I would like, I want to make sure that I am not making myself un-necessarily unwell.

For example, if I only have 2 years left....regardless of what measures I take, why would I say, OK....make me feel like shit for the next 4 months or so first?

That's like saying,
"I am going to bang my head really hard on this wall, because it feels great when I stop!"

The following information is the conclusions of studies on this cancer from:-

Medical College of Cornell University. NY. NY.
University of Texas Medical Branch, Galvaston. Texas.
Koshigaya Hospital, Dokkyo University School of Medicine, Koshigaya, Japan.

I retrieved it from the internet when I was first diagnosed.

After reading the reports in full, I have condensed their results in to the following bullet points.

•  Only 22 patients with this tumour have been reported in English literature to date. (One report states 19 and another, 25).
• Current therapies have usually resulted in poor outcomes.
• The results confirm the particularly unfavourable prognosis of patients with small-cc of the...
• All 3 patients with this tumour, 2 died within 4 months, the other patient, her clinical outcome has not been determined.
• Current therapies have resulted in poor outcomes, and new therapeutic modalities should be explored.
• After chemo-radiotherapy, she became neutropenic, developed sepsis, and died several days later of septic shock.
• She was given palliative chemo-radiotherapy, she was evaluated after her radio therapy, the tumours had reduced considerably. She had nausea, skin rash and diarrhea, was referred to a hospice and died 4 months later.

The positive here is that no one seems to know what happened to lady No.3.

If she seems to have disappeared, and has not come to any follow up appointments.........

Where could she be?

On the run?

Deceased?

Anyway, I am taking this info with me to the hospital today, and I have my list of questions.

I will ask her to get her reference material out, so that we can look through it together, as I did initially.

I will make a sensible and informed decision after I have considered the answers to my questions.

I will post the questions and answers on my return, and share my final decision with you, when I have made it.

Am I scared of dying?

No.

Am I concerned about the amount of pain I may suffer leading to death, or undergoing treatment?

Yes.

Am I concerned about the quality of my life?

Yes.

6th February - 12th Day of 3rd chemo cycle

Yesterday was a busy day.

I felt well for most of the day. I became very tired in the evening.
Still had sore mouth and throat....still strange 'goings on' with my left arm.
Tinnitus continues.

I had spells of indigestion, palpitations and dizziness, all of which were short lived, I would say each occasions lasted less than 60 seconds.

A new development......continuous pain to the left side of my back, just around the waist area...nagging...still there this morning.
It isn't stopping me from doing anything, it is just there. Still there now.

I have to go to the hospital to discuss radio therapy tomorrow, and I have to be measured etc.
I will be putting together some questions that I have to ask to ensure that I make an informed decision regarding any further treatment.
I will post the questions and answers tomorrow.

I had a bit of a scare this morning.
I got up, went in to the kitchen, the door that is usually closed was open, Dougal, (my little dog), was not in the kitchen where he usually is.
My first thought is that we had been broken into over night

My heart was pounding, I felt sick.

I went in to the living room to see if he was there... the cushions from the settee were missing, looked again, and found Richard, (Derek's son), asleep on the other settee.
Dougal was there.  Phew!

Further investigation indicated that take away food was had.

Sat 5th Feb - 11th day of 3 rd chemo cycle

Felt really good all day yesterday...I did get very tired at about 19.00hrs, but I stayed up until gone 22.00hrs.
I had a fitful night.
I was up at 02.00, went back at 03.00, tossed and turned until 04.30ish, then I didn't want to get up when the alarm went at 06.00.
Kept putting the alarm on snooze, and here I am at 06.40 with a cuppa!.

Yesterday morning, I went to the market and got some veg, then I went to pick Keith up from the station at 12.30. (An hour earlier than expected).
Back home for 1.00.
1.15, Dean, Nikki and Finley came to visit, and as they left at about 2.00, Dot and Pete came to visit.
Emma and Cameron came at about 3.30.

Wow so busy, so popular!!!!!!!
It was great to have so much going on for absolutely no effort!!!!!!

As I am a great believer in D.I.Y, I didn't even make anyone a drink, I got someone else to do it.
That is what I call  'management'.....delegation!!!!!

Still had a swollen body, sore mouth, sore throat, tinnitus, and that weird 'left arm thing' kept niggling all day.

Other than that..............GREAT DAY!

4th Jan - day 10 of 3rd chemo cycle

Hi all,
Looking forward to seeing my son Keith today, he is here for the weekend!
I will be picking him up from the station at about 13.30.

I have to take a trip to town this morning, and finish the cleaning that I abandoned yesterday because I became very tired.

Mild nausea, lethargy, tinnitus and  sore mouth are the only side effects that I had yesterday, so that was good.

Emotionally...well, on a bit of a roller coaster due to a bit of sad news and a REAL reality shock...neither of which are related to the chemo.
I am feeling vulnerable, hurt and under great pressure!
I will get over it!
I will rise again from the ashes!!!!!!!

I am going to concentrate on a wonderful week end with my son!!!!!!

3rd February - Day 9 of 3rd chemo cycle

Happy Chinese New Year!!!!!!!

This year is the Year of the Rabbit!!

I am a 'Sheep', (or goat, depending what you read).
I am also a gemini, just in case anyone is interested!!!
"A Sheep with no silencer", as described by some..................

Well, yesterday was a good day, it started well, and continued........
Although, something weird happened...........

I was sitting at the computer.......when suddenly, I had beautiful coloured lights zig zag to the right side of my right eye. These lights continued to zig zag, and move in a circle, this circle got bigger and bigger, until I was unable to see at all with my right eye. I closed my eyes, but it was still there.
Yes, it was very beautiful, but it really scared the pants off me lol!
This 'sensation' lasted for about 35 minutes.
My first thought, was a migraine, but there was no pain.
Anyway, as son as it was over, I looked on the internet to see if it was a side effect of chemo.
I read nothing to indicate that it was, however, the symptoms sounded like something called 'Ocular Migraine'.
I didn't really find anything else out that was helpful to me, but it didn't come back, so all is well.
All great news!!

I stopped procrastinating, and actually went and paid for my funeral..so that is all done and dusted.
That is a lot off of my mind.

But...bloody hell............£2,950.00!!!!!!
CONFIRMATION! You can't take it with you when you go!  They wont bloody let you!!!!!!!!!

My body is still swollen all over, particularly my feet to my knees.
 I was woken by a pain in my left lower arm this morning, It keeps coming  and going, but if I hang down to the side and give it a good shake, it stops for a while. so more positivity.

All in all, minor irritations, but all manageable!

So...................I am looking forward to another good day!!!!!!!!

2nd Feb day - Day 8 of 3rd chemo cycle

Yesterday afternoon and evening, I spent a some lovely time with some great people.

I had a really good time, and I thank you all!
I had a small nose bleed, and felt tender around the shoulders.
Mouth ulcers have come back.....other than that, not too bad at all.

This morning, I woke at 08.00....and......wait for it...........

NOTHING HURT!!!!!!!!!

Whoooooooohooooooooooo!!!!!!!

Blimey, I had forgotten what is was like!

I can move, twist, turn, stand up, sit down, throw my arms about.......
And NOTHING HURTS!!!!!!

This means that I can attack the day with gusto, vim and vigour.......

Come on Life!!!!!!
Catch me if you can!!!!!!!

Well, maybe not quite that much..................

1st February - 7th day of 3rd chemo cycle

Good morning!
Well, I am up at a decent hour this morning, despite going to bed relatively early last night.

I was easily tired yesterday......I had to rest after my shower, then again after each task that I under took, but I managed to get them done.

Things seem to be a little different this cycle, I can't really put my finger on it.
I am swollen all over....hands, feet, neck, throat...in fact, my chin seems to have disappeared, it looks like my face is part of my neck!!!???

The top of my head is really sore too.

My throat is sore, and most of my body is unable to tolerate any tighter clothing on it, like underwear, waistbands to skirts and trousers.

My eyesight is still a bit squiffy.....I am weeing for England..(no change there then!)

I had a really good night's sleep.

My temperature seems to be OK.
My head doesn't feel like it is full of treacle, which is how it has felt for a couple of days...(well, so far this morning, anyway).

Emotionally and psychologically.....well, I have been up and down, up and down over the past couple of days.

Right now, this very minute, I feel fine.

I have loads of support from friends, family and work colleagues.....
So, today's conclusion...I am a very lucky girl!

So all in all, the positives are still out weighing the negatives.

31st Jan - Day 6 of 3rd Chemo cycle

Well, here I am at silly O'clock again! lol!
My own fault!
Felt a bit 'delicate' yesterday, so I was napping all day, went to bed at 20.00hrs, and here I am!
04.35.

I am not feeling too bad, certainly a lot better than yesterday!

I have noticed that I have swollen up like a water balloon....hands, feet, face.......hopefully that will all go as the day progresses.

No tinnitus this morning! That is the first time for yonkers!!!!

My body is a bit tender...back, shoulders, neck, but no worse than the last cycle, so that is good.

I feel as if I can carry on with ordinary life today, just as well, because I have so much to do!

I am looking forward to getting it all done........
Pick Mum's new glasses up from the optician,
Get some shopping in......the cupboards are running a bit bit bare....Talk about 'Old Mother Hubbard!'
Try the Wedding set that I made for my niece, she is coming this morning to see it.
Price up the other jewellery that I have made.
Check that the M.O,T went well on Keith's potential new camper van.

General cleaning and domestic chores, although, I can't say that that has filled me with with too much excitement! lol!

30th Jan Day 5 of 3rd Chemo session

Well, I had a bad night last night, couldn't sleep, felt nauseous, dizzy and generally yukky.

I was supposed to be going to Bristol today, go and see my Son Robert, have lunch with a friend, and come back.
I was really looking forward to it.

Oh well, things could be worse....
Hopefully I will feel well enough in the week.

I am feeling quite tired today, but that is to be expected as I was up for much of the night.

I think that I will have a long, hot and powerful shower, get dressed and take the day slowly...
I may even feel better after my shower, usually do!!!!!!

29th Jan - Day 4 of 3rd chemo cycle

Today is a good day, I am feeling positive, and as long as I don't dwell on the radiotherapy, I am feeling pretty good.
Still having some side effects, but they are manageable.
And...so far, no worse than after the first cycle, and better than the 2nd cycle.........

I have had a nice long chat with a very good friend of mine this morning,
I have another good friend coming for a few days,
I am going to visit my son in Bristol,
I have finished making a tiara, necklace, earrings and bracelet for my niece's wedding,
I have organised a week end away to view the wedding venue for my daughter's wedding,
My son is coming to visit next week end

What else is there, life is good!

28th Jan - day 3 of 3rd chemo cycle

Gone off coffee again!
So it is tea for me for a few days.
Palpations, heartburn, incontinent of urine, tinnitus, complete lack of concentration and focus.
Sleeping patterns all over the place.
Everything is manageable though.

So far, so good.
I think that I have to go a day at a time, and not think to much about what is coming next.
Until it comes.........

I have been thinking about how I can help....
So...
I am already a qualified Aromatherapist, so I thought that I would specialise in palliative care and Aromathery for people with cancer.

It is a two day course, and I can do it online.

I have been a registered organ donor since I was 18years.....and of course, now, no one will want any of my bits, nor can I give blood, so I think that this is a way that I can give something back.

Already starting to feel better!!!!

27th Jan 2nd day of 3rd chemo cycle

Yesterday, Pete, my brother in law to me to the hospital,
Dot, my sister in law stayed for the first hour.
We arrived at 08.30.
Mum came in the afternoon.
We left at 17.30

I was so tired, and I kept dropping off to sleep.
I was told that my blood levels were the lowest that they had been so far, and this would explain my tiredness
Apparently, if the blood level drops further, and I become more tired, I need to contact the hospital.
If the level drops a further 0.6,  - a blood transfusion may be require.

Well, it wont, because I wont let it! (thank you slappers).

During the chemo, I felt great discomfort in my arm, (the one with the drip).
This was when the syrup type substance was infused, it was dealt with promptly by the nurse.

I was very tired and dizzy when I got home.

Slept like a brink until 02.00, when I need to use the loo, and I found it difficult to go back to sleep.
I can downstairs for a drink, I made a coffee, and had a bit of a surf on the net, went to take a sip of coffee, and it wasn't there.
Spent a few minutes looking for it.

A day of confusion ahead?

I had put it in the fridge! (I am hoping that this isn't how the day proceeds, lol).
I don't know though, it may be fun and liven up the day.

I am going back to bed now ..05.00.
See you tomorrow.
Have a great day!

Still today, day 1 of 3rd chemo cycle

Well, I have been 'virtually' slapped from all directions, my little body, (OK, my not so little body), is positively glowing....
or should I say,
'Glowing with positivity',
So thanks to all my little slappers out there!
You know who you are .......................lol!

So, a great big thank you!

26th Jan 1st day of 3rd chemo cycle

I think that having to go to the hospital 3 times this week, and discussing the radiotherapy has made me feel a bit sorry for myself.
When I was first diagnosed, I had a look on the internet under:-
Neuro Endocrine Small Cell Carcinoma of the vagina.
I looked again on Monday evening.

Nothing new has been posted....
Basically, there are only 25 recorded cases in English literature, only one survived longer than 2years, regardless of having the treatment.
With these stats, I am wondering if I really want to feel like sh*t for 25% - 1/4 of  what is potentially, the rest of my life!

Will someone come and give me a 'good slapping'.
Negativity is creeping in, and I must not to allow it!

I must! Must! Must find my positive head...........
Will post again when I get back from chemo, depending how I feel.

24th Jan - day 20 of 2nd cycle of chemo

I went to see the Oncologist yesterday to discuss Radiotherapy.

This is what will happen.

Today.
Have bloods Taken.

Tomorrow.
1st day of 3rd chemo cycle.

7th Feb.
CT Scan.

Go and be 'measured' for radiotherapy. This will make sure that the 'zapping' takes place in the 'desired area'.

The Area.
Pelvis and vagina.

3 - 4 weeks.
At the end of the next chemo cycle the radio therapy starts.
This will be over about 5 weeks.
I will have radiotherapy daily for 28 days, this will be Mon - Fri, not over the week ends.

Side effects of radiotherapy.
The area being 'zapped' will be very sore, and present like severe sunburn.
Cystitis.
Diarrhoea.
These will be constant through out the whole 4 - 5 weeks.
Shrinking of the vagina, this will occur over the period of treatment, and wuld be permanent.
To avoid this happening, I need to wear a 'dilator' in my vagina for 2-3 days a week, keeping it in all day.

There may be permanent damage to the bowel.
This would present as constipation right through to being unable to empty the bowel due to a blockage. The later is apparently rare.

When this is over, I have to start chemo again.
3 x 3 chemo cycles as now.

These 3 x 3 weekly cycles started on 19th December.
They took place
19th Dec 2010
13th Jan 2011
26th Jan (tomorrow).

I am not sure how I feel about all of this yet.
I will discuss that here tomorrow.

Have a great day!

24th Jan - day 20 of 2nd cycle of chemo

Raging sinusitis, galloping heart burn and tinnitus this morning.
Not a lot else to say right now.

I have my hospital appointment at 15.45 today, so a lot more to report after that.
Blood tests tomorrow.
Ist day of next cycle on Wednesday....busy this week.

This is not a week that I am looking forward to! lol

Needs must, and all that!

23rd Jan - day 19 of 2nd chemo cycle

Well, I went off into town yesterday..I felt really well, looking forward to dining out, have a nosey around the shops..Great!

Would you believe it, I left my bloody purse at home, never done that before in my life!!!!!
So, I have to say that my concentration and ability to focus has definitely been affected!
(Or I am loosing the plot completely lol!)

I will go again on Monday, to do what I didn't do yesterday due to my stupidity.
I will go before I go to the hospital to discuss radiotherapy...urghhhhh

I forgot that it was Wolves v Liverpool at home, so there was no parking in my usual spot, just as well really, because I had no money to pay!
I got caught in all the traffic on the way home...

Yep, yesterday was 'character building'.