22nd February - 2nd Radiotherapy session

As I explained earlier,
I have to have radiotherapy each day for 28 days. (I get week-ends off).
I was told yesterday,
"Looking at you notes, we are throwing everything at you, this is quite a high dose".
This has confirmed what I was told earlier by the oncologist...it is not palliative treatment, which is apparently lower doses to make the patient as comfortable as possible when little else can be done.
My appointment today is 9.40.

I will 'post' again when I return today, but in future I will post on my return from radio therapy, so it will be late morning/early after noon.

Right now, I am drinking, (well, I have finished it actually), my daily glass of cranberry juice.

Chat again later!
Have a good day.

21st February - after the first radiotherapy session.

Got to the hospital.
A nurse called me through, and went through what I can expect. starting with do's and don'ts.

Don't
Use your usual products to wash and moisturise the area concerned. (between the waist and top of thighs).
Rub dry.
Worry if you bleed from the vagina.



Do
Use 'Simple' soap and shower gel.
Drink one glass of cranberry juice daily.
Drink plenty of fluid.......about 1 glass of water each hour.
Buy some Aqueous cream to moisturise the stated area 3 times daily.
Pat dry.
Expect the side effects to start kicking in 7 - 14 days from today.
Expect the side effects to 'peak' about 2 weeks after the completion of radiotherapy.
Rest as much as possible.

Inform us if/when
Your skin starts to break down.
If you get diarrhoea.
If you get cystitis.
If you have any other concerns.

She asked if I had any concerns so far, and I went through a couple....they were not to do with radiotherapy, but with chemo.

I brought up the following:
Bloating/swelling
Memory
Lack of concentration and focus
Forgetting how to spell simple words
incontinence
sinusitus/headaches
walking into things
lack of co-ordination
deteriorating close vision.

The nurse said that she would speak with the oncologist and let me know tomorrow.
I went in to the waiting room to wait for my radiotherapy.
The nurse returned almost immediately and said that the oncologist needed to see me.

I went to see her. She said that she wanted to send me for a brain scan to satisfy herself and me, that 'there was nothing going on there'.
I need to wait for the appointment for the scan.
This seemed to be the thing that concerned her most, although, she and I are aware that this can be a side effect of the chemo.

I went for my radiotherapy. This was absolutely painless!!!!

Only the side effects to worry about now then!
Whooooooohooooooooo!

21st February - 1st radiotherapy session.

My appointment is at 10.30, it  is 6.30 now. So only 4 hours to go.

I will drive myself there and back.

This afternoon, I have to take my Mum to the blood clinic, so I have to drive then anyway.

I am taking Mum with me to the hospital.

2 reasons:-

1. I don't want to go alone. (Derek has arranged for someone to come and fix the t.v. ariel at 12.30, so he must be at home for then).

2. I don't know how long it will take, so I want to be sure that we get to Mum's appointment on time.

I need to make sure that I wear suitable clothing, as I will need to be naked from the waist down, so I think that a skirt that I can hyke up, pop socks, so I don't have to remove tights and put them back on again, this way, all that I have to remove is my knickers and shoes. So I will wear slip ons.

Well, off for my shower now and to ready myself for the day.

I will report back on my return.

OOPS.....not like this.............

More like.........

No shampoo required now, just a duster Lol!!!!!!!

20th February

First things first....Roxanne's wedding!
Venue has changed.....again!
Now it is in Scotland, in  a ruin...still outdoors.
So....looks like it is all sorted now!
Scotland - 6th August - 4pm
Outdoor buffet -  All sorted - Awning in place, just in case!
Dress has arrived, bought and paid for.
Rings ordered.
Phew!!!!!!!!! Done and dusted, just need to look forward to the day now!

Ahhhhhhh...relax!

Ooooo, and sort out what I am wearing when I know what shape I am going to be at the time!
(Looking a bit like a Zepplin right now.....well at least I don't have to wear rubber undies and breath in all the time, a bit like being pregnant, there is an excuse to 'let it all hang out!'

Paper work......I am sorry to say, that further procrastination ruled yesterday, (see if I can remove this inertia and do it today - not looking promising though! lol!)

Logged on to cancerreasearchuk,org yesterday, and met some lovely people, in similar and worse situations than I find myself...Hi Carole!
Those of you who have shown an interest in this blog, may also like to read Carole's.
caroleandcancer.blogspot.com.

Well, tomorrow is the day I am not looking forward to!
I will gather all of my courage, and shove it in my handbag.
(Hopefully afterwards, I will think that it was,
'Much a Do About Nothing.'
Rock on William Shakespear!

19th February

The only things that are concerning me at the moment are:-
Lack of concentration,
Poor Memory,
Poor close up vision.
Continence issues.
Intermittent swelling of the hands, feet, face and neck.
Bloating and swelling of the abdomen.
And occasional  challenge regarding my co-ordination.

And, of course;
Radiotherapy on Monday.
I am trying to remember if I was less nervous, as nervous or more nervous than before my first chemo session. I think that it is about the same.

The other stuff seems to have settled to no more than I would have expected 'pre-chemo'.

The kitchen is complete! Blinds up...the lot! I am really pleased, it looks great!

Roxanne's wedding dress arrived today, so I am going to  protect it hang it up.

I am also going to sort out all my paper work , I have been putting it off for a couple of weeks now!

Have a great week end!

18th February - 23rd day of 3rd chemo cycle

Hi All,
Something new to tell you regarding the chemo......(Well, I hope it is the chemo any way)!

Went off to buy my blinds, to a place that I had been loads of times, jumped in to the car, brum, brum, off we went.
(Mum came).

I couldn't remember where it was, I drove around and around....I just couldn't find it....I couldn't remember how to get there!

I headed back home, and hoped that another shop, closer to home, would stock what I wanted.
I had been to this shop even more often, and it wasn't far from home.

Well....Bloody hell, I couldn't remember where that was! It took me ages to find it.
(Stop laughing)!

I did get what I wanted there, and 2 have already been put up.

I will have to take the sat nav to places that I should know how to get too....how daft is that?!!!!!!

The other side effects remain the same.
They are all manageable, even the new one, with the help of my trusty sat nav!!!!!

February 17th - Day 22 of 3rd chemo cycle

Kitchen is finished....Yaaaaay!

Roxanne has chosen her dress......
Wedding will still take place on 6th August, but she is off to Scotland with Tom, her Fiancée to check out another potential venue....(she will decide eventually, I only hope that it wont be too late)!

Anyway, if you want to see the dress, go to:-

http://www.thedarkangel.co.uk/catalogue3.php?pic=4&p=35

(Site wouldn't let me copy the pic).

I am going to get some blinds for the kitchen today.

I stayed in bed until 10.30!!!!!!! Never been known!!!!!!! Mind you, I was very tired.

Side effects as usual, but sinusitis is particularly bad today, but still manageable,

Monday is sneaking up on me.....I intend to do as much as possible, particularly 'nice stuff' before it arrives!

16th February - 22nd day of 3rd chemo cycle

No real change from yesterday.
I am getting increasingly nervous about the radiotherapy starting on Monday.
I am doing as much as I can to keep my mind off it.

I am still feeling very positive though.

Just like this lovely cat....He knows that his patience will give him what he wants in the end!!!!!!!

The floor was laid in the kitchen yesterday, and it looks great!
Still have to get the cupboard.
I have decided against the larder unit, instead, I will get a double base unit to put under the work surface in the utility room.
Hopefully, my friend will be able to pick it up for me today, whilst I finishing the final bits of 'tatting' to get the kitchen exactly as I want it.

15th February - day 21 of 3rd chemo cycle

The decorating in the kitchen is finished!!!!!!
Floor going down today.

I need one of those 'larder' cupboards, you know, the tall kitchen cupboards, with a door and shelves inside, I can't fin done any where!!!!!!!

We went for a drink with the Bride and Groom yesterday afternoon, and she looked beautiful.

It was nice to catch up with some of the family.

Side effects......
Well, a bit of a surprise!

I need to wear incontinence  pads at the moment, because I am getting no warning when I need to use the toilet, it just comes! This applies to urine and faeces.
I really do hope that it is temporary!!!!!!
Based on my information, I imagine it may carry on during the radiotherapy, as it is a side effect, the faeces, anyway.
This started in earnest yesterday afternoon.

Please, please please be short terrn only!!!!!!!!!!!

14th February - day 20 of 3rd chemo cycle

Side effects - usual suspects....
tinnitus, sinusitis, close up vision not too good, intermittent heartburn, tire easily,  lethargy and still peeing for England, and if I have to 'go', I mean NOW!!!

All of the above are mild and very manageable. I should imagine that they will become milder as the week goes on.

I was so tired yesterday, I slept in longer than usual in the morning, and went to be d early last night. Slept like a brick!
Had a lay in this morning too!!!

New side effect are expected from the radiotherapy, which starts on 21st, and they probably wont 'kick in'
immediately...(hopefully).

I doubt that there will be anything interesting regarding the cancer and treatment to report until Monday.
So, I will take the opportunity to just waffle about what I am doing or not doing for the next few days.

 I am off to a wedding this afternoon, and supervising the decorating of the kitchen, well the last little bits anyway.

13th February - day 19 of 3rd chemo cycle

I was really tired last night, and I slept longer than usual this morning.
Sinusitis woke me this morning. It is worse than usual, so I will take some pain killers.

I think that I may have over done things Friday and Saturday....
No matter, it was worth it!

I intend to cram as much 'good' stuff in this week as possible, just in case I feel a bit rough when the radio therapy begins on Monday........
If I sail through it, (which is my intention), then I will continue to cram 'good' stuff in, just because I can!

I am going to a wedding tomorrow, having new flooring laid in the kitchen on Tuesday, Clean the kitchen cupboards out on Wednesday, and sort the washing. (Been awkward washing for a few days,because Derek is decorating the kitchen).

Thursday, recharge, haven't decided what I am going to do on Friday, and out to lunch with a friend on Saturday, sort out any paperwork/post that needs to be done on Sunday....then...Oh, joy and rapture!
Radio therapy starts.

12th February - day 18 on chemo cycle

Went to Wales.
Sapphire drove Roxanne from Leicester to me in Wolverhampton.
With a couple of breaks, I knew that I could drive to Wales.
Well.........
The M4 was closed from Junction 23 to and including 28.
I had to go around the houses, and spent more time reversing to let oncoming cars by than I did going forward!
Instead of taking 3 hours, it took 4 and a half hours.
I was completely knackered when we got there!

After coffee and a break, we went for a walk around the grounds. That was great!
Going for a 'yomp' through he woods, stopping to look at the Lake, petting the horses in the field, the Hotel dog decided to accompany us. It was very pleasant.

It was very muddy and wet, I had my walking boots on, my jeans rolled up to my knees, and red brown and orange wooly socks that were hand knitted for me by a friend...a delightful look.

Today, Roxanne found the ruins of a Castle over looking the Three Cliffs bay, so on Monday, she needs to see if she is able to use it for her Humanist wedding.
The drive back was a lot better on the way back than on the way there.
All in all, a very pleasant stay.

The side effects were the usual suspects, but all manageable.

I am 'hanging' now...so I am off.
Good night.

11th February - Day 17 of 3rd chemo cycle

I had a really relaxing day yesterday.
I was experiencing mild chest pain and palpitations.
This morning, I have sinusitis and tinnitus.
I also had a nose bleed.
All of the above are manageable, so no complaints from me.

Today, Roxanne and her friend Sapphire are coming, they should be here about 09.00.
Then we are all off to Wales to look at a couple of venues for Roxanne's wedding.
I expect that it will take about 3 hours to get there.
We will return tomorrow.

There are a lot of little things that I want to get done before 21st, when I start radiotherapy.
I have no idea how I am going to feel when it starts, so I am erring on the side of caution, in case I feel unable to do much.

I am really looking forward to a couple of days away!!!
I will post again tomorrow, but it will be later in the day than usual.

Have a great couple of days! I know that I will!!!!

The above pictures are of Thee Cliffs Bay, which is where we are going, and the Hotel that we will be staying in.
Let's just hope that weather is kind.

10th February - day 16 of 3rd chemo cycle

Well, yesterday, I wrestled the shower to the ground and prepared my self for the day.

We sorted the boiler, (I use the Royal WE, it was Derek), only for it to go again!
And Derek started to decorate the kitchen. (After a lot of procrastination). It needs new flooring, as the existing floor covering is old, tatty, and a bit dangerous now.
So...............I felt that it should be decorated first, the guy is coming to lay the new floor on Tuesday.

Whilst the decorating was in progress, I went to have a manicure and pedicure, a bit of a treat!
(I usually do all the painting of the walls and cutting in, but I don't feel up to it).

Well, the therapist was very 'enthusiastic', and managed to scrape my meet to the point of drawing blood, so I have 3 plasters on my feet!

My finger nails, well, the nail polish took over an hour to dry, so both thumbs and the index finger on my left hand got well and truly 'spoiled', and I have to remove the colour before I go to Wales tomorrow.
That's a bummer, because I had them done because I was going to Wales tomorrow.
Grrrrrrrrrrrrrrrr!

I am still very excited about going away with Roxanne,her friend Sapphire and my Mum, to 'case the joint' as a venue for her wedding in August.

Side effects...
Other than the additional issue of sore feet, which I suppose is self inflicted, yesterday,
I was physically sick,
Had chest pains and palpitations,
Flashing lights and impaired vision, (to the left eye this time),
Sinusitis.
Tinnitus...this has been ongoing.
Peeing for England
And this bloody bloating, which is ongoing...I am starting to look like a painted balloon!

Non of the above have been difficult to manage, so.........I am coping quite well and have no real complaints.
(Apart from the bloating...but that means new clothes, and what self respecting woman would complain about that)! lol!

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..................