Fighting the Drittsekk

Tree Decorations and Big Plans

2010-12-15T15:07:46Z

I decorated my Christmas tree today and was struck by a couple of profound thoughts.

1. This time last year, I had no idea of what was going to happen to me. And that's fine with me. I would much rather live life as it happens rather than fret about things. Yes, I'll plan for the future to a certain extent, but I'm not going to get so embroiled in thinking what might happen tomorrow that I forget to live today.

2. There have been so many acts of kindness shown to me this year.
- My boss enveloped me in the biggest bear hug when I broke down in front of him whilst I was telling him about my diagnosis.
- My work colleagues have collectively donated 10 GALLONS of blood [and counting] on my behalf this year.
- Our wedding guests donated over £1000 to charity for us.
- The staff at the Christie are unfailingly wonderful. They deserve medals.
- And the folks here have listened, read my ramblings, commented on them and supported me, particularly through the dark days of early diagnosis.

My life is enriched by what has happened to me this year. I know some people may think that's an odd way of looking at it, but it's true. I feel blessed to have had all these experiences and I wouldn't change a single thing.

Yesterday I made a formal application to go from full time at work to part time [working 4 days per week instead of 5] so that I can "give" that fifth day each week to the Christie as a volunteer. The application form for the Christie is next on my To Do list........it's something I HAVE to do. I've been given a second chance for a reason. If life is sending me down a different path, I have to listen and go with it.

Jacqui x

Wedding Day

2010-12-05T15:49:12Z

I'm a married woman!!

Andrew and I tied the knot on November 20 in a day full of laughter and celebration.

We didn't want anything "posh", just a happy day with our friends and families - and that's exactly what we got. A mellow, relaxed atmosphere with lots of little touches to make it special e.g. my bouquet was cream, and I added 5 red hearts to it, each containing the name of a loved one who couldn't be there. Also we asked for donations to charity instead of wedding presents.

The Registrar was lovely, very professional but with a wonderful warm humour about her. We wrote our own vows and "ring words" and everyone said how beautiful they were.

The hotel looked after us so well, nothing was too much trouble. Ours wouldn't have been the biggest booking ever, but that didn't matter - the service was fantastic and the food was excellent.

I wore turquoise. I'd known all along that white wouldn't be right, and cream/ivory etc would make me look ill. And I'm not the slimmest of people - so I decided the dress would be a statement - and it was!! I will never forget the look in Andrew's eyes when he saw me. I felt like a million dollars, and I can't say I've ever had that feeling before.

I didn't drink much - apart from water; I was SO thirsty!! - and I wanted to stay clear-headed so I could remember as much as possible. My brain was buzzing that night, trying to process all the memories.

Of course, the cancer was mentioned, and it's only right that it was. Some lovely words were said about how I'd fought it so bravely and positively, which was very kind. [But I did nothing special - just faced it with determination, that's all].

So I'm safely married to the man I love, and we face the future together, whatever it holds.

Jacqui x

Not long 'til Something Joyous

2010-11-04T11:25:21Z

I get married to the wonderful Andrew on November 20.

It's my first marriage, his second; he's a widower.

His first wife died of cancer.

Hers was lung cancer, and unfortunately had reached Stage 4 before it was diagnosed whereas mine's cervical, Stage 2b - and I'm in remission.

But even so, telling him my diagnosis on 18 March this year was one of the hardest things I've ever had to do in my life.

When I was diagnosed, I gave him the chance to walk away. I couldn't put him through it all again, with no guarantees of any sort of happy ending - and I told him that.

His response was to tell me not to be so stupid, and that his place was by my side. In sickness and in health, he said.

At the end of a pretty horrible year, it will be so good to have something to celebrate with our friends and family.

And I'll make sure I raise a glass to all my Macmillan friends as well. Thank you for helping me, being there, supporting and sharing when I needed you.

Jacqui x

Work. And Doctors [not the TV programme :-)]

2010-10-25T11:31:15Z

Went to see the doc last week for advice/guidance re the tiredness. I explained about the low energy - it's probably about 80% of where it used to be. She asked about my daily routine, both at home and work, so I told her.

And then she gave me an almighty telling off!

Apparently I'm trying to do way too much, putting myself under too much pressure etc. I have to start listening to my body, not my head. I have to stop "beating myself up" about not being back to full strength yet.

Then I had to tell my boss. I was honest [no point in being anything else!] and told them what the doc had said. He went away.....and half an hour later was back, with the suggestion that maybe we could try tweaking my hours a bit. Instead of doing 9 - 3 five days per week, how about trying 9 - 4.30ish, four days per week and having Wednesday off. That way I'd get a break from work AND commuting mid week, and give me two 2-day bursts of work.

It sounded like a good plan to me, so this week we're giving it a try. If it works, I'll stay on those hours at least to the end of Nov, maybe longer.

I've said it before, but I'm going to say it again - I am so grateful for the way work have treated me. It's taken away what could have been a huge source of stress and concern.

But it does mean my Grand Plan of giving back by volunteering at the Christie is going on hold for a while. So I'm starting Plan B and setting up a donation to them every month on payday.

Jacqui x

Wedding Rings & Tiredness; A Ramble.

2010-10-19T21:25:47Z

I can't really describe how I'm feeling today. 2 main factors are contributing to this state of weirdness.

The wedding rings arrived this morning and they're beautiful. We've chosen Elvish Love Rings - i.e, gold bands with inscriptions in Elvish [we're both HUGE Lord of the Rings fans!]. The inscription says:
One Ring to show our love
One Ring to bind us
One Ring to seal our love
Forever to entwine us.

[A romantic twist on the rather more sinister inscription on the Ring Of Power in the films!!!]

And the other factor is that I feel tired. Low energy. I'm pretty convinced it's tail-end effects from the treatment, but I'm going to get it checked out, just to be sure. I've spoken to a couple of folks who've been through it/had family members go through it, and they've all said the same i.e. that it takes months for energy levels to return to something approaching normality.

I'm back to work 5 days per week, doing 9 - 3, with a 1 hour commute each way on top of that. This past couple of days I've been beating myself up, thinking I should be doing more. But I just can't seem to manage even one more hour til 4pm.

I've always been the same though - trying to do too much. Standards too high. Silly story that's just popped into my head - I remember trying to write an essay for A level English at the very start of the 2 year course and my mum finding me in floods of tears because my essay wasn't [what I thought should be] A level standard!! She rightly pointed out that I'd only just passed O level and had 2 YEARS to work towards A level standard - but to me it was a HUGE deal that I wasn't A level standard.

Work aren't putting me under any pressure. They wanted me back 5 days per week fairly quickly but now that's done they're OK for me to take it at my pace.

It's me that's putting me under pressure.

But then how do I know where I should be in the recovery process? And I have to have goals, I can't just drift along. It's good to be working towards something.

Sometimes it's good to be determined and bloody minded and sometimes it's not. I have to try to be kind to myself!

Jacqui x

Making Things Happen

2010-10-08T11:20:06Z

Well, I've done it!! I've taken two steps towards my Big Plan.

I've emailed the Christie's volunteer co-ordinator person and offered my services. I explained why I wanted to volunteer and I'd give anything a go. Awaiting their reply.

I've also had the "off the record" chat with my boss. I explained I wouldn't be doing anything formal for a few months but wanted to make him aware. He was brilliant - not only did he say he'd support me doing it for the Christie, but if for some reason they didn't use me, he'd also support me if I wanted to volunteer for another cancer-based cause. Which I would certainly do - Macmillan being next on the list.

He also said he'll consider compressed hours as an alternative to part time, or a mixture of compressed hours and part time i.e. instead of doing 35 hours in 5 days, he'll look at, say 32 hours in 4 days instead, to minimise the impact on my income.

Kinda hard to explain, but doing this feels Right, somehow.

On a more frivolous note, I took my wedding dress to the tailor's yesterday for taking up of the hem and minor remodelling of the bodice. I went into the shop wearing my scruffies, so when I stepped out of the changing cubicle wearing the dress, it was quite a transformation!! [even if I say so myself]. Bearing in mind my dress is in fact a turquoise floor-length ballgown, I guess it must have been quite a sight!!

I've also decided I'm going to do all those things that I've thought "Oooh, I'd like to do that at some point", and I've booked the first one already. It's a weekend at the 2011 F1 GP at Silverstone. It's my wedding present to Andrew; we're having a 3 day pass to the event and 2 days in a hotel. I'm very excited and hope I can keep it a secret!

Getting a second chance at life has made me determined to live.

Jacqui x

Sad news today is fuelling my determination

2010-10-04T12:44:53Z

When I went off work sick in April [to have radio and chemo treatment] a colleague called Gary contacted me, sent his good wishes and told me that his sister was being treated at the Christie at the same time as me. She had a young son, no more than 5 years old.

I found out today that she didn't make it.

Even though I never met her, I feel so sad. Sad that a young mum didn't make it. Sad that her young son will only have vague memories of his mother. Sad for her widower, for Gary and the rest of their family.

That sadness is making even more determined to change my life in future. I'm absolutely set on volunteering at the Christie, giving something back, not only for me now, but also Gary's sister.

And I'm also determined to get the most from my own life - do those things I've always wanted to do, such as go to a F1 Grand Prix, go to concerts for bands/artists I never thought I'd see, visit places I've always wanted to visit.

Sometimes being a stubborn, bloody-minded Taurean has its good points!

Stay strong

Jacqui x

Giving something back

2010-09-24T19:12:34Z

Since I was told last week that I'm in remission, I've been thinking a lot about how I can give something back to the Christie Hospital.

I'm so grateful for the care I had [and continue to receive] there - and I've reached the conclusion that I am going to go part time at work so I can volunteer at the Christie.

I don't care what I do - make tea, carry files about, show patients and visitors where to go, help people fill forms in, clean toilets, anything.

I've had my calculator out, and worked out I can afford to do 4 days per week instead of 5, and on my "day off" I am going to go to the Christie and give my time to them.

I've talked to Andrew - my fiance - who is 100% supportive of my plan.

Of course, I'll have to wait a few months until I'm definitely out the "danger zone" myself, but as soon as I possibly can, I am going to volunteer.

So it's decided. I'm going to:
a) have an "off the record" chat with my boss at work and give him the heads up about my intentions, and
b) approach the Christie's volunteer co-ordinator person and offer my services.

I know I may have to wait a while until I'm accepted. I know they may not have any vacancies. And if this is the case, then my alternative promise is that I will donate the equivalent of 1 day's wages per week to the Christie until they will let me volunteer for them.

Jacqui x

Oh, frabjous day!

2010-09-17T11:02:28Z

Yesterday I went to the Christie for the biopsy results.

There are NO cancerous cells.

NONE.

They're doing some cross-checks to be sure, but the consultant oncologist says there's a very high chance they'll come back negative too.

They remain "suspicious" of it, so I will continue in the cycle of MRI scans, biopsies, results etc - but as of yesterday, there are NO cancerous cells. I'm not totally out of the woods, but I'm exactly where I need to be at this stage in the process.

Yesterday when the surgeon told me, I cried. Relief, I guess. Today I feel happy and relieved but remain mindful that this is "only" one step in the process. It's a huge one - and it's in the right direction - but the fight against the Dritsekk continues.

Even so, it's great news - just what I hoped but didn't dare dream.

Jacqui x

Round and round and round......

2010-09-13T18:21:35Z

The upcoming biopsy results are on my mind.

It's 50/50 - either it's dead or it's alive.

Of course I want it to be dead. For the chemo and radio to have worked. To remain on a cycle of MRI's and results for the next few months and years. For me to be able to give good news to all the people who have supported me through this.

It's also the easy option as regards timing, too. My wedding's in November so of course it would be sooooo much simpler for me to be able to continue to plan, prepare, book things etc.

But there's just as much chance that it's still alive - meaning a radical hysterectomy and possible stoma bag.

I've thought and thought about this and I know - and accept - that if that's what it takes to get rid of the Drittsekk, that's what I'll do. That doesn't mean I WANT the outcome to be an op, but simply that if the surgeon tells me on Thursday that I have to go through an op, then I'm ready.

But then I go into timings. When is it likely to be? [no idea] What's the timescale for recovery? [also no idea] Is it likely that if it's done before the wedding, I'll be recovered enough to cope on the day? [no way of knowing] Or do I wait until after the wedding? Would it even be safe to wait a couple of months til after November, or should I have it done regardless?

I've made the Registrar aware and she's been brilliant, so I doubt there'd be any problem if I needed a chair during the ceremony. And all the guests know the situation so they'd be supportive and understanding.

I'm trying ever so hard to stop my thoughts going round and round my head, but in my quiet moments, there they are. That's why I'm blogging here tonight, to try and release them from my head and on to the screen.

I am hoping so much that it's dead, but am also psyched up and ready to deal with the implications if it's alive. I just want to know.

Jacqui x

Inspirational Song Lyrics #3

2010-09-11T10:38:11Z

An Extraordinary Life - Asia

A perfect day, or so I say
From where I'm standing
This rollercoaster ride
Fate will decide the ending

Love everlasting, or lost on the way?
The smiles and frowns, the ups and downs
Of fortune turning
The twists and turns, the lessons learned
The bridges burning

Nights to remember
And never forget

Go, seize the day
Wake up and say
This is an extraordinary life
Enjoy today, come what may
This is an extraordinary life

I gave it all
My cards have fallen
But I'm still alive
And in the end
Believe, my friend
I will survive

Glory and heartache
And some of the joy

Go, seize the day
Wake up and say
This is an extraordinary life
Enjoy today, come what may
This is an extraordinary life

All of the good times, all of the bad
Responsibility is totally mine I know
I rightly stand accused
But I believe
Yeah, I believe
Yes I can change my world

Go, seize the day
Wake up and say
This is an extraordinary life
Enjoy today, come what may
This is an extraordinary life

[from the album "Phoenix"]

Biopsy Done - The Waiting Game Begins.

2010-09-07T13:03:53Z

Well, that's the biopsy done. As far as I can tell [bearing in mind I was unconscious at the time! :-)] it went well - certainly they didn't tell me about any problems/difficulties when I came round.

I'm home now and feel fine so will be going into work tomorrow.

I've done a little thinking about the possible Big Op. I am NOT worrying about it - I don't "do" worrying, it's not in my nature.

I've decided that if I do have to have a radical hysterectomy and bags, so be it. Thousands of people live with it and so can I.

Of course I'd prefer to be told that the biopsy showed the tumour was dead. That the Drittsekk was defeated. That I'd just be on a programme of scans for the next however many months/years.

But I can't ignore the possibility of the op and that's why I've thought about it and reached the above conclusions. If it keeps me alive, and gives me a quality of life and however many years to spend with my fiance, then that's what I'll do.

Like I've said before, whatever it takes.

Jacqui x

MRI Results - and the Next Steps

2010-09-04T22:28:15Z

MRI results last Thursday. Much to absorb and think about.

Scan Results:
1. Good News Part One - the tumour has halved in size in 3 months as a result of the radio and chemo. The consultant oncologist is delighted with this [and so am I!!] It's gone from being a very very large growth to a reasonable size; still enough to cause some concern but nowhere near as critical as before.
2. Good News Part Two - the cancer has not spread anywhere else.

Next Steps
As the tumour has shrunk significantly, the medical team can see more what they're dealing with - and they think they can go for a full cure! [although of course this isn't without its risks].

The next step is that a biopsy is going to be taken of the remaining growth.
a. If this shows the cancer is dead i.e. what remains is just scar tissue/dead cells, I'll remain in the cycle of MRI/results for a few months yet to make sure it really is gone.
b. If a "viable tumour" [translation: active malignant cancer cells] remains, they are talking about a Radical Hysterectomy to cut it all out. There are some potentially very serious things that may happen during this including cutting away part of my bladder and/or bowel - it all depends on what they find and where they find it.

Whilst I was at the Christie the surgeon saw me and talked me through it all. I also had the pre-op assessment. I’m going in for the biopsy under general anaesthetic on Monday 6 Sept; won’t be home ‘til Tuesday 7 Sept at the earliest. [It’s a short timescale because they had a cancellation, nothing more sinister than that].

For now I’m focusing on what is definitely happening i.e. the biopsy. There’s no point fretting about the rest of it until we know what’s what, which will be on 16 September when the biopsy result comes in.

I spoke to a colleague at work who made 2 absolutely brilliant points. He said:
1. This was always going to be the next step, it's just that you didn't know it before 'cos the time wasn't right and the path wasn't clear. But now they can focus on getting rid of the cancer altogether, and
2. Remember how far you've come already.
What a wise man - and he's 14 years younger than I am!!

I also talked it over with Andrew [my fiance]. I told him he needed to think very seriously about life with me if - worst case - part of my bowel and bladder had to be cut away and I had to have stoma bags. His reply? That there was nothing for him to think about - it that's what it took to keep me alive and on this planet then so be it.

How do I feel? [apart from filling up after writing down what Andrew said........]
1. Very relieved that the radio and chemo has worked its magic and the Dritsekk is dying.
2. Very apprehensive about the possibility of a Big Operation - the surgeon said it would be a radical hysterectomy at best - and the possibility of life with bags. BUT I keep telling myself that's only a possibility, it hasn't happened and it may not happen. And anyway, lots of folks have bags and live normal lives.

Whatever it takes.

The Dritsekk HAS to go.

Jacqui x

Convalescence - and the future

2010-08-20T15:15:49Z

Convalescence
Conscious I've not written here for ages, time for a good catch up.

Weeks 1 - 4 of convalesnce I didn't really do much. Couldn't go far thanks to the sting-y wee side effect post radio, but that went away pretty quickly.

Weeks 5 - 7 of convalescence showed a gradual returning of strength. I was able to get out and about a couple of times per week, not far, but far enough to be a change of scene and something to stimulate my mind. I also saw my consultant at the Christie, who was happy with my progress, and went to stay with my fiance for a few days. Travelling was tiring, but had plenty of time to recover, and he spoiled me rotten, so it was worth it.

Weeks 8 - 10 of convalescence showed a continuing recovery. Was able to get out and about 3 times a week [sometimes 4] and my GP was happy to confirm I was ready to go back to work- after a full batch of blood tests showed everything was normal.

Return to Work
I'm now on a phased return to work - this is the end of Week 3. For the past two weeks I did two days per week; next week it goes up to three days per week. It's going well - although I still get tired quite quickly. But that's OK.

The first couple of times I went back were overwhelming. I'd had 10 weeks+ of almost constant isolation in a small village, so to return to a BIG city and an office full of people was a real onslaught to my senses. I can understand why people become reclusive if they don't go out for a while! It was very intense.

Everyone at work has been so supportive and is making sure I don't overdo things when I'm there.

It's good to be back and my confidence is returning.

The Future
I have an MRI scan at the Christie on Monday, 3 months after treatment ended. Too early for them to be able to say it's gone, but I'm hopeful they'll be able to see it's shrinking and dying. The scan doesn't faze me at all, but I will admit to being apprehensive about the results. Trying to focus on the positive though.

The HRT is kicking in. I had a lot of aches and hot flushes but I've been on it about 3 weeks and it's definitely making a positive difference.

And the wedding is still on. The hardest thing I had to do in all of this was tell my mother and my fiance [who lost his first wife to cancer] that I'd been diagnosed. OK, it's a different cancer but it's still cancer. I gave him the chance, many chances actually, to walk away - I couldn't put him through that again.

He stayed.

I know there's a long way to go but I feel well. And apparently look well, too - a lot of my work colleagues have commented on how much better I look - but then the last time they saw me I needed 10 units of blood and was being attacked by a Dritsekk!

I'm still the same Jacqui - same sense of humour, same attitude towards life. It may have affected me physically but it will never, ever change who I am.

Jacqui x

Keeping a brave face

2010-06-13T13:40:37Z

Just finished week 3 of convalescence and it's going OK. The problems that were keeping me indoors [urgent need to wee, and sting-y pain when I did] are gone.

Went to a local town last Tuesday, which I enjoyed. I was there a couple of hours, didn't do a lot, but it was just good to be out and about, seeing different things. I also went to the nearest city on Thursday. I enjoyed it while I was there, bought a couple of new tops and an eyeliner, but looking back, it was WAY too much for me and I was exhausted on Friday and Saturday.

Not really sure what's up with me today, but I feel quite down.

Maybe it's because I'm putting a brave face on for everyone. I'm still determined to fight this thing and beat it, but there seems to be a constant stream of people asking me how I am, phoning me up, emailing me etc and I find myself saying the same thing over and over again to the point where I don't know if I mean it and I can't remember who I've said it to and who I haven't.

Just re-read that last paragraph and it sounds really ungrateful. It's not meant to - I know it's because they care, and because they're thinking about me. I'm grateful for that. And I don't want to tell them to stop contacting me/leave me in peace because it would either make them worry or upset them.

So I put on a brave face, smile and say all is well when actually I feel down.

I'm sure it's a phase and it'll pass - just gotta hang in there.

Jacqui