A necessary evil...

A few weeks ago I got a summons from the Breast Screening service at the local hospital. At the time I thought it was yet another belt and braces check ordered by my Oncologist. I was not best pleased, but it fell on a none working day, so I had no excuse to avoid it. The thought of the mammogram made me very nervous. My sister is four years on from breast cancer and we are awaiting genetic testing to check if our cancers are genetically linked. I have had enough of hospital and cancer and I am frightened that if they find breast cancer, I will have to endure more surgery and chemo to deal with ANOTHER dose of life threatening illness.

Today was the day. I drove to the hospital a bundle of nerves. I booked in and discovered that my appointment was a coincidence, it was just my turn for screening. My turn duly arrived and the lovely lady  manouvered my body and boob into possibly the most uncomfortable position she could, then she clamped my boob between the plates. That hurt. Then she screwed it down tighter and went off to take her picture. To be fair, it was only a few seconds of excruciating pain but it made me cry. I am feeling very vulnerable at present and am probably more susceptible to painful stimuli. I explained this to the radiographer and she was most sympathetic but nothing changed the fact I had to have three more pictures taken. Two of these required me to hold my breath. When all was done, the radiographer said she would check the quality of the pics before I left to avoid me getting a call back letter. I sat and waited, and my heart plummeted when she called me back. Sure enough I had to have two more pictures taken. If I thought the first ones had hurt, these were worse because my breasts were so tender from the previous procedures.

Now, ladies I don't want to put you off. These are life saving measures. Screening does mean that breast cancer can be caught early and treated effectively. I WILL attend in three years time. What I will say is that the means for screening MUST have been designed by a man. You will note that testicles are not monitored by being squashed VERY firmly between two blocks of plastic. I rest my case...

A letter to two absent friends.

Dear Margaret and Felicity,

Firstly to say that I still miss you both.
It's sixteen years since I last saw you Margaret, just before you went into hospital for that second operation. How we laughed about the silky nightie and your clever sexy consultant. But he couldn't save you. Your body was too frail from your first surgery and the chemo, and you never came round from the operation. We had such plans, you and I. We were going to open a nursery together and give a wonderful start to learning for lots of little people. You'd be proud of me. I learned to drive and I'm a full time teacher too. I remember all you taught me about how to handle children and I do believe I am a better teacher for it.

Felicity, it's only about seventeen months since I last spoke to you. I knew how much you loved me, despite my failings. You did not want me to see you dying. You believed in me even when I made mistakes. I remember sitting at the hospital with you, when they were first trying to find out what was wrong in 2005. I brought you strawberries to tempt you to eat, and a holding cross that fitted neatly in your hand. You nearly died then, but your indomitable nature won through and you were just strong enough for your chemo, and then your surgery. I admired you so much, as you told me you only had more chemo when it started to hurt. You served the people you loved selflessly for years. I'm sure they all miss you still in your small town.

So ladies, you'll be wondering why I'm writing. You both became my friends at the same time, but first Margaret died, then years later Felicity. The point, my friends, is that the same bloody disease that took you, Ovarian cancer, has got me in its clutches. I'm lucky they got mine early, and surgery has been successful, and the chemo seems to have zapped those evil cancer cells.

So my dearest friends, here's the deal. I'm going to do all I can to make you proud of me. I'm going to show this disease who is boss, and that boss is me. I'm going to tell the world until they are sick of hearing what the symptoms of Ovarian cancer are, and how to spot them. I'm going to show the world how brave and strong you both helped me to be. I only hope I can be half the women you were.

Thank you both for being my friends. I love you both.

love

Ali x

I had a hair cut...

No, no, ... sorry people, this was a one hair cut. Mr G and I popped in to show my lovely hairdresser my fluffy hair and she spotted an errant longer hair and (with my permission) snipped it off. We all laughed a lot!

In other news, I did have to pluck my eyebrows as they have grown with such enthusiasm and abandon. There are quite a few fluffy hairs mixed in with the smooth dark brown grown-up ones. I have tidied up the fluffy ones so I look less like a teddy bear.

The after effects of my final chemo were quite horrid and indeed I can still feel them. I had quite dreadful pain for two days where my skin was sore and ached to the extent I could not bear to be touched. The fuzzy muzzies are still in attendance. However, I can now get my head round the knowledge that this part is over. I shall have to be very careful to avoid infection over the next week or so as I am sure that my white blood cell count is very low. I am gradually allowing myself to acknowledge that I don't have to go for treatment in two weeks time. The relief is enormous. It will be a grand day when I take all the meds I no longer need back to the pharmacy.

Mr G and I are chatting about things we fancy doing - eating some recently forbidden foods features quite highly. I fancy a trip to the seaside but can't risk paddling for a couple of weeks yet. We are really looking forward to seeing our granddaughter, and to meeting the new grand children in time. We might take in some animal watching at a zoo or safari park. There are lots of National Trust properties for us to explore.
The sun is starting to shine once again...

The first day of the rest of my life...

So here I am. It's been a long journey from first symptoms on 7th January, surgery on 2nd March and beginning chemotherapy on 21st April. It has all been going on for thirty weeks so far. I have a follow-up appointment in four weeks time, I guess I will find out then about the procedure for my follow up check-ups. I know I will be seen for five years, with the interval between appointments increasing as long as there is no recurrence of cancer.

The picture above is of a significant date for me. Those who know me well will know that it is my birthday. This year, I will be 55 years old. I am going to have a big party, one to celebrate my birthday but also to celebrate being here. There have been moments this year when I wondered if I would make it... when they thought I was riddled with cancer, when I faced major surgery, when I wondered if I could cope with the rigours of chemotherapy. But I'm here, my scan showed no cancer, my cancer marker is absolutely normal - just now there is no visible cancer. The watching and waiting begins. I need to work out how to be watchful without being obsessive. I need to wait without allowing my life to drift between checkups.
This is part of the reason I'm having my party, It is to be on 5th November as my birthday falls on a week day. It will definitely go with a bang with all the fireworks around.

Mr G and I are going to spend some quality time having fun, once I come out of the dark side. We are going to relish not having to work out good days and bad days. August 25th will see me feasting on the foods I have had to avoid for months - soft cheese, pate and bagged salad for me! September 5th is the day I return to work.
Life here I come, cancer will live in the back seat... not rule my life.

Hair and tears...

My hair has been growing for three weeks now and my head is covered with down. My eyebrows are starting to grow back too. Now, when I shower, I have to gently pat my head dry so I don't damage the baby hair.

I'm told that this baby hair will be replaced in time by proper hair. To properly care for my new hair I quickly realised that the hair care implements from before, would not do. I have those brushes with plastic spikes for blowdrying, these would simply cut my scalp to ribbons.
So yesterday, I went and bought some more suitable hair care tools.

Aren't they lovely! The brush is really soft and is gentle on fluff and scalp. The comb will need to wait until the hair has enough length to lie down.

I have often said how much I appreciate Mr G. I would certainly have struggled to cope on my own. Ever since I first became ill, remember this saga began on 7th January, he has supported me, held me, hugged me and cared for me. He has been very tired recently with the pressures of end of year work in a large and busy school technology department as well as looking after me. Things came to a head this morning. The house has suffered with me in the dark side and Mr G tired out from work. We started straightening up this morning and exchanged some uncharacteristically sharp words over the jobs. The upshot was that poor Mr G went into meltdown. I have rarely seen anyone sob so hard. This of course set me off and we huddled on the stairs weeping in each others arms. It really brought it home to me what an immense burden cancer puts on everyone involved in it. As Mr G so rightly says, there seems no end to it all. Although my treatment ends soon with my final chemo, this does not remove the spectre of cancer from our lives. We still have to live with it day in, day out. We have to learn to live in spite of it. None of this has been helped with my Local Authority sending me letters saying that my sick pay was being halved next month because I 'am unable' to return to work! I can't work , work is closed!! I have sent in my Fit to work certificate. Fortunately our School Bursar is not a jobsworth and is going to sort it out for me during her school holiday. Mr G knows I am blogging about this. We are fine, if tired from the meltdown. Mr G had internalised all his pain and worry for months and months, I'm not surprised he crashed. We will continue to love and care for each other like we always do.
We are strong, cancer won't break us.

All the bad stuff...

Today I'm fed up - sooooo here goes...

Yup, in all their glory - the BAD BITS.

Losing and growing hair hurts - nasty tender scalp.
Your skin does not fit anymore - it peels or becomes tight.
You can't rely on your digestion at all, crippling constipation or raging runs.
Your favourite foods taste horrid.
There is no let up - there are no holidays from treatment.
Everything is exhausting - sitting down, standing up, all of it.
Everything is confusing. It takes enormous effort to understand what is going on (see above).
It makes me cry - I hate uncertainty. I have nothing but uncertainty.
It hurts - treatment hurts, it makes you sick and sore, in ways you never imagined.

... and yet, through all this, my friends, my family and the much and always beloved Mr G, see in grumpy, snotty, tear stained me, someone that they love, and they carry me...

Thank you xxxx

Pretties...

I'm sure I'm not alone in saying that a diagnosis of cancer has far reaching consequences. It is a bit like dropping a pebble in a pool, the ripples expand outwards affecting more and more of the surface. The ripple I'm writing about today is about appearance and confidence. Although my surgery did not have the impact on my body image that breast cancer would have done, it has left a mark. I never did wear clothing that flashed my tummy (ever), but nonetheless my scar is large and my tummy has a rather lumpy appearance. I've made it clear that losing my hair bothered me less than it might others. Despite this my confidence in my appearance has taken a huge knock. I think it started before my cancer was diagnosed when my abdomen swelled so much that I looked 8 months pregnant. I had to buy clothes quickly to cover the bump and all while I was feeling really poorly.
We have a couple of weddings to attend soon and a scan of my wardrobe revealed very little that was suitable. I have my outfit from my daughter's wedding, but that was in April and the clothes may be a little warm.
So, it was with trepidation, I set off with Mr G to buy some clothes on Saturday. I had it in my mind that a maxi dress would be a good idea, but remember I wore these first time round in the 1970's. To cut a long story short, after three shops my heart was sinking. Why dress designers think an ample bosom can be contained by shoe string straps, I have no idea! Most of the dresses I saw would have caused me to frighten small children.
Then I saw it..

The Dress...

...it has it all. Enough coverage to be decent. It is made of silk, so it is swooshy. It makes me feel like a princess. I bought it.

I was on a roll. In short order, I found a little crochet cap to which I added a silk flower to wear with the Dress.

Next, I found two tops which fit like a dream, and either of which are perfect for the evening wedding we are attending.

Lastly I found two scarves which make lovely soft head coverings for cooler days and evenings.

It is hard to describe how much the success of these purchases has raised my confidence. It is a huge step towards getting my life back.
Onwards and upwards.

Ho hum...

I've not blogged for over a week. I have just not been 'with it' enough to write. I had extra steroids immediately after my chemo. These removed the sickness and nausea, and also meant I did not have any bedbound days. This was all good. However the fuzzy muzzies seem to have gone on longer and this has made me miserable. The muzziness has probably only been an extra 24 hours but has affected me disproportionately. I am wondering if the only issue is one of perception. Without the bedbound days as contrast, maybe the fuzzy days are not worse, just do not appear so good.

This week has been one of contemplation too. I have been talking to friends about getting back to the world of work. I am desperate to be part of the world again, but I am quite terrified that my poor battered body will not hack it. The surgery is a thing of the past but the toll taken by the repeated poisonings of each chemo session cannot be denied. I intend to get back to work in September, initially part time, but full time by the third week. I don't have much choice, I run out of full time sick pay and cannot manage on half pay. Looking at life, past treatment, is scary, full of unknowns. I know life is never about certainties, but my confidence in what life might bring has taken a beating. My Oncologist, attempting to reassure me, says I will be monitored and checked. This will not stop the cancer coming back, just let me know if it has! Over the next weeks and months I need to sort out how to live in spite of having cancer. I refuse to let it blight any more of my life. I refuse to live in fear. To this end I'm not writing a bucket list. I'm just going to have a list of things I will do, when I want and because I want to do them. Cancer will not limit me living my life.

It's the way you look at it...

Finally I am able to announce that I am to be a Granny twice more this year. I am absolutely delighted. Rachel, my first grandchild, is a great joy, if a little far away. Her Mum, my daughter in law, is brilliant at posting pictures and videos so I can still enjoy the good bits.
I have known about both babies for a while but was asked not to brag about one of them until after the first scan. That was yesterday, and quite suddenly my life took on a different complexion. Nothing has actually changed, there was no more new good news. I was just able to share my jubilation, pride and joy.

The difference is in the way I'm looking at it. I am now focused beyond my three remaining chemo's to the rest of my life. A life that will contain two happily married children and three grandchildren. I am excited about returning to work in early Autumn. I can see beyond what has to be endured and I am excited. I really hope that I can hang onto this good stuff when the fuzzy muzzies kick in and I'm bedridden again.
During my second chemo cycle, three weeks ago, I shut myself away and was becoming low in spirits. This time I've made an effort to get out, do stuff, give myself challenges. I feel so much better for this, my spirits are higher and I have a better quality of life. All the things I have done this week were there to be done before. The difference is in how I looked at it.

I need to tell you something...

When I was first diagnosed with ovarian cancer, all I knew about it was that two very close friends had both died of it. One almost exactly a year prior to my diagnosis. This obviously made me very anxious and fearful for my long term survival. I was fortunate to discover that my cancer was nowhere near as severe as their's, but the cruel statistics are that only 30% of women diagnosed with ovarian cancer are alive five years later.
Before I really knew I had cancer, prior to my operation, I decided to make my will. I did not want to leave Mr G with a mess to clear up. In with the will form were forms saying what your funeral wishes were, songs, readings, burial etc. Mr G and I did not talk about this. I put everything in a big envelope and told him to open it if I died. The envelope is still sealed.

However, Mr G and I have talked lots. I deal best with things when they are out in the open and I have a 'plan'. Now, I do believe I'm going to be around to annoy you all for many years to come. Despite this, I have talked with Mr G and he knows my views on most of the issues should I become life limited.
I do need to change some of the contents of the sealed envelope. After reflection I have opted for a green burial instead of cremation. My funeral may need to be two hours long because of all the songs I want, so maybe I'll put them on my ipod and then it can be played at the wake you will all attend. You are still requested to wear bright colours to the funeral. I expect some of you will made to feel very uncomfortable by all this. This is the way I need it to be for me.

Yesterday, I had another 'I need to tell you something' chat with Mr G. I told him I did not want to die at home if I could help it. I'm not going to go into all the reasons. They are mine and Mr G is in agreement with me.
My point in this rambling is that Mr G and I have talked about some terribly difficult things before we HAD to talk about them. We can set it all aside as info to be filed. I have no intention of dying for ages. My treatment is going well, my medical advisers are very pleased with me. I am resting much easier though, knowing that there is a plan in case things change.

Alone but not lonely.

Having been off work for three months already, I have had to become used to long periods at home alone. I'm lucky as Mr G works in a school so has school holidays off, this has meant that I have had some respite. It was incredibly difficult coming to terms with a life without the routines to which I was accustomed. When I was recovering from surgery, I was restricted by my limited strength and stamina. Now, while I have chemo, I am restricted by the effects and demands of the regime. So, what do I do to pass the time? I am quite capable and able to undertake household jobs and errands during two weeks of my chemo cycle. I struggle during the first week, when my muscle strength is affected. It was quite upsetting to realise I could not even chop an onion!
My lifeline during the last three months has been the Internet. There are unkind souls who suggest that I might be addicted to my facebook games, but they do provide a free, easy pastime. Aside from the games aspect though, I have a lifeline of company through facebook and twitter. I have 'virtual' and real life friends all over the world. This means that there are people to talk to 24/7. I use facebook and twitter in completely different ways. Facebook is for games and for exchanges with people who are in the most part people I know in real life. I chat with colleagues and family, it feels for all the world that we are just chatting about day to day stuff. Twitter is very different - my interactions started first as a professional learning network for my work as a teacher. Gradually this built up, then some of the initially professional contacts became friends, with whom I have 140 character conversations about all kinds of topics from the domestic and bizarre! I now have 185 people on twitter with whom I interact on varying levels. The psychological importance of being able to keep in touch with education and educators during an extended period of absence cannot be overstated. Since I started blogging about my fight with cancer, I have gained new contacts through twitter and my blog. Some of these are people I interact with daily, some only once in a while.
I am also taking the opportunity to read while I have the time. I must admit that I am indulging in 'easy reading'. I can't cope with anything too serious or emotional so my bag comes back from the library full of chick lit and whodunnits! These all take me out of my living room and into other places and countries with engrossing characters. If a book does not grab me by the end of the first chapter it goes back to the library! I tried audiotapes but I tend to fall asleep and miss important parts of the plot. Some might say I have lost the plot!
I have tried to do my embroidery but the numbness caused by the chemo makes it hard for me to hold the needle. This is very disappointing but I hope that after all the chemo finishes I will be able to start again.
I do have days when I am totally fed up and cheesed off. Everybody does. But I really have to say that thanks to the Internet and the characters in the books I read I may be alone, but I'm never lonely.

You guys are awesome...

Richard and I went to watch the London Marathon and support those running for Ovarian Cancer Action. This is a small charity raising funds for research and awareness of the disease. I have signed up as a Voice, I shall speak and write to raise awareness of this type of cancer.
Back to the Marathon, what a humbling experience. Even when I was well I could not have even walked 26 miles. Yet, thousands selflessly put themselves through what looked like agony to raise money for people like me. The beautiful weather made it a pleasant experience cheering on the runners, but made the running/walking extra hard work.I did not recognise any celebrities but enjoyed the efforts of the runners who had dressed up, especially Superman who made an amazing time. I was not able to manage to watch everyone pass by, my body gave up on me and I got too sore to stand any longer. Given how busy it was we had a really smooth journey by tube back to our car.
I have always enjoyed watching the Marathon on TV. Some of the efforts of the runners gave me goosebumps and a few tears. None of this prepared me for the amazing atmosphere at the event and the sheer determination and tenacity of the runners. To everyone who ran/walked/hobbled round the course - thank you. To everyone who sponsored those who ran - thank you. You people are wonderful.

Next Steps...

I went for my pre-chemo assessment, at Kettering, this afternoon. Having felt quite blase about it all for the last couple of weeks, reality hit hard today. Brave left the building and a full blown scared and crying episode moved in. The chemo nurse said she would have been more worried if I had not cried. I heard little I had not heard before, but said in small chunks, with plenty of time for questions etc. The room in which I will receive my treatment is bright and sunny, not too hospitally. No tv, but radio is playing. We are encouraged to take entertainment with us, so ipod, books etc will be packed, as I shall be there for a minimum of 5 hours each visit. We were given all the emergency phone numbers we hope we will NOT need to ring, but out of hours care is provided in Northampton so we will need to keep the cars fuelled up. If I should need in-patient treatment I will have to go to Northampton. I feel quite fragile again now - I have had to face the fact I have cancer full on again, it has been easy to pretend otherwise during my convalescence from surgery. It seems such a bitch that I'm just feeling better and I'm now going to be, as my chemo nurse said, ' being filled with poison', and am very likely to feel like absolute rubbish. Still we discussed the hair loss, and strategies to deal with the practical bits of going bald over 3 days, and managed to have a laugh! I am very glad I am not a vain person, because the treats in store would really challenge a person who enjoyed external gorgeousness. My bald, spotty, puffy, sore and grumpy exterior will hide my totally gorgeous inside, so you will all have to use your imaginations...

Moving on...

Another week has gone by - I am physically much recovered. The daily ritual of injecting my tummy has lost any charm it ever had, but only six more days to go!
I am enjoying the compulsory daily walks far more in the sunshine and I can walk further every day. However, should I have the temerity to be over ambitious my tummy muscles soon get me back in line. I have definite dates now for Chemo Pre-assessment on 12 April and when it actually starts in 27 days. Somewhat strangely, I am impatient for this. I want to get on with the fight. Before then though I have some really good things to do. My daughter gets married in just under 3 weeks, a day I could not miss. My Oncologist was quite definite that the wedding came before Chemo. I get to see some dear friends this weekend. More good stuff to store. This is necessary. There are times when despite all the love, care and concern that surrounds me I feel anxious, worried and frightened, but then I do remember the good stuff and wrap myself up in it like a soft sweet cloud.

The news is sinking in...

Hmm, so a week and a day have passed since my diagnosis of cancer. As I've said before it wasn't a surprise - I had been warned. The last two days have been really hard, I'm feeling better enough to become frustrated with my slowness and soreness. It has also sunk in that my life is NEVER going to be the same. I will always carry my scar, but also I need to come to terms with the fact that there are no guarantees - no-one can say you are cured for ever, the cancer will not come back. My job now is to live my life in spite of my cancer. I must NOT let my fear, yes fear, rule my life. I've only got this one life and I refuse to blight it with my illness. I intend to do all the fun things I can, get back, as soon as possible, to the job I adore. I have lots of reasons to make me happy; fabulous friends, an amazing husband, gorgeous children and a grandchild (maybe more eventually :-)). Someone described me as stoic - I wasn't last night, in the dark, I was frightened. The face I want to show the world though is not one of resignation, but one of determination, of stoicism. For I am determined to get on and live the BEST life I can. Cancer picked the wrong diva all right!

Well, that was nasty...

So, I have cancer, ovarian cancer... was not actually a shock as I had been warned. The need to have chemotherapy is a pain, as I had really hoped the op was all I needed. However, an ovary had ruptured releasing those pesky cells into my tummy. Not sure when I will start chemo, have to see oncologist first. Am fitting first one around my daughter's wedding - a balance between still having hair and not throwing up all day! I know I will lose my hair as I am having a cocktail of two chemo drugs; I decided to give those pesky cells the biggest shock I could. The next months are going to be a challenge, but I have amazing support in real life and virtually online.
Get the sick bags ready, my friends, this could be a bumpy ride!