Thursday, 15 December 2011

The First Three Month Check Up.

In the whirlwind that has been re-entry to the Planet Earth of work and life post surgery and chemo, I had my Big Party, and managed to shove Cancer beyond everyday worry. I haven't had a counselling appointment for a while, and have immersed myself in applying for a new job (that's going to be a post on Well, I Never, if I ever get over my crossness), and the demands of teaching 30 seven and eight year olds. Cancer was something that had happened to me, in my past, not worth the time to worry,
Oh, how wrong I was, as today's appointment loomed closer, I got more and more stressed. Sharp words were exchanged, I could not concentrate.
As I sat in the waiting area, which was uncharacteristically quiet, I was offered the customary hot drink and biscuits, I accepted gratefully. I had brought my book but was too restless to read. The department secretary took a call which clearly was about someone who had died. My anxiety rose. My name was called.
Dr M. greeted me with her usual cheer. I told her I felt very well (I do!), better in fact than I have done for a couple of years. She examined me, felt my neck and collar bone area. palpated my tummy, and said that all seemed well. We chatted a bit about my new granddaughter and the baby due very soon, and I said my goodbyes and left.
I should have been ecstatic. I am well, there is no evidence of active disease.
I cried, I fretted, I railed... I do not want to hear 'I'm well now' but still have years of worry and concern, the rest of  my life in fact! I want to know CANCER will never come back. I know that can NEVER happen. Cancer moved back into my waking life again.
My day did not finish there though. I wrapped some Christmas presents. I looked at pictures of my granddaughters visiting Santa. I finally finished the work that had been dogging me. I took a long hard look at my life. Mr G came home and hugged me.
I shoved Cancer back where it belongs.
I took control of that which I can control and moved on. I acknowledged the pain and uncertainty, then I looked elsewhere. I chose to encircle myself with all the good things I have.
I am very glad to be well and alive.

Sunday, 27 November 2011

Wednesday, 23 November 2011

Well, gosh ...

I received an email today from a lady called Emma telling me that she had mentioned my blog on her blog BBC - The Ouch! Blog  I am astonished that my telling of my story has reached so far. It started out as a vehicle for me to story my life during my journey through cancer surgery, treatment and the subsequent emotional fallout. I hope, in the nicest possible way, that I can eventually draw a line under cancer. Until then though I will keep writing on This and That to keep my story going. Thank you for reading it.

Thursday, 17 November 2011

Another big step...

Saw my counsellor today, and she is very pleased with my progress. I had a real epiphany after the last session and managed a lot of 'stuff' sorting in my head. Someone said that we should seize the power. That power is within us all, we just need to find it. I found my power on November 3 2011. I absolutely refuse to worry about something COMPLETELY outside my influence. So I'm getting on with my life. I've been investigating a new job. If I get it, it will challenge me but not bring me to my knees. I am ready for this. All I can say is 'Bring it on'

And here are two very good reasons for living every scrap of my life well!

Thursday, 3 November 2011

The fallout... and the rise of Ali.

I have realised that after telling you all I was to have counselling, I have been very quiet on this blog. Tomorrow, it will be three months since my last chemo. They have been eventful and bumpy. I have been back at work since 5 September. The return was both good and bad. The emotional fallout was awful, my unpredictable tears frightened others and appalled me. The good has been getting back to what I love best and getting to know my new class and sharing time with my much missed colleagues. My stamina has returned along with Belly Dancing classes. I am gently shedding the chemo and steroid weight, and will persevere to lose a bit more too.

When I finished my counselling session today, I went up to the chemo suite, to say hello to the nurses and set a few ghosts out of the way. The smell of the chemo was a shock, but the nurses were so thrilled to see me looking so well and with so much hair. They cooed, and fussed and hugged me. It was totally the right thing to have done, and fitted well with the last remarks from my session.
I feel strong. This is so good. I realise now that this time last year, I was finding living hard, suffering from inexplicable exhaustion. So life is good.

On Saturday we have the Party. This will in no way be an anticlimax, because above all it is my personal celebration of me. To have reached this point in spite of my cancer is a huge landmark in my life. So many things have culminated to allow me to finally love myself, truly for the first time in my life. This poor battered body bears the marks and scars of a lifetime of stretching, pushing, pulling, cutting and healing, but ultimately it has not let me down. I am not going to fret about bl**dy pensions and retirement age. I will not let things I cannot control  take charge of my life. I choose to live my way. While my heart beats in this body I will celebrate being Ali. I am wife, mother, grandmother, sister, daughter, stepdaughter, auntie, stepmum, daughter in law, sister in law, teacher, all equally. My love, my spirit, my all, I give to living my life to the full, one day at a time, for who ever knows what is around the corner.

Sunday, 9 October 2011

A little bit poorly...

Having returned to work, I have been really busy but collected a cold last week. This has now developed into a chest infection. I saw the Out of Hours Service this morning and have antibiotics. It seems strange to have a 'normal' poorly, after all those months under treatment, ever facing the threat of Serious Infections. I actually feel very put out by it, as I felt sure I would be fine once back at work. This was ridiculous given that I work in a germ factory, commonly known as a school!
 I am working hard on my work/life balance. Work, unfortunately, is winning. Not because I am not organised but because there is SO much work to do. I am also tiring very easily so am heading for bed at 8.30 pm, missing much of my evening. I am actively trying to redress the balance, but it will take time. The first promise I made was not to take work home. This has bitten me on the bum this weekend, because if I am not fit for work tomorrow I can't get my data done, as I did not bring home my evidence!! Doh! I have not worked out a way round that one yet.
One successful part of work/life balance has been keeping up with friends! This is a source of great joy, usually preceded with the cry "Look you've got hair!" This completely mystifies those not in the know, as I now have enough hair to style, well, sort of!  I have a cap of silvery, still baby soft hair. I think I will keep the colour natural now, even though I could dye it in February.

I have my assessment for counselling next week. Although I know it will be hard, I recognise I need help to deal with all that has happened. If I look at my life, post treatment for cancer, it is bitter sweet. Bitter, because I don't think I'll ever feel able to draw a line under cancer. Bitter, because I have friends who are dying from the disease. Sweet, because I can enjoy life more fully again. Sweet, because I've been able to play with Rachel, my granddaughter, once again. Sweet, because I'm looking forward to being an active Granny to my two soon to be born grandchildren. Life is bitter sweet always.

Wednesday, 21 September 2011

I did it ...

I've had an emotionally charged day today. This post is, in a way, a follow on to I can't stop crying. I still can't stop crying.
I had a telephone interview this morning with an adviser from Occupational Health. I had reservations about my dealings with them, at the beginning, but today she was great. Our conversation persuaded me that the crying had gone on long enough, has been embarrassing enough and is sufficiently unpredictable that Something Had to be Done. To this end she recommended I seek counselling. I have always prided myself on being a coper, a mopper up of the tears of others. I have got through bereavements, marital break-up, illness in others, homelessness, unemployment in self and others, four house moves in six years - me, I thought I was indestructible. How wrong. It appears I have dealt with none of it properly. The race pell mell through surgery and treatment left me no time to reflect properly. I either felt too ill, or unwilling to pause, to reflect, to work through all the Stuff.

And now, I've had to do one of the hardest things ever, for me, and admit I need help. I left a message with my Macmillan Nurse L. this morning after I spoke with Occupational health. She rang this afternoon, we talked things over. She was unsurprised at how I'm feeling. The upshot is that I have been referred to the Hospital Clinical Psychologist, employed by Oncology services. L. said some people have one appointment and find out that they are actually coping well. Great news. Others, she said need much more support. Oh, I said.
L. knows there is a lot of Stuff I have not dealt with, but in her deliciously calm and soothing north eastern accent, she reassured me that no, my world had not imploded but that I need more help than she can give me.
Astonishingly, to me, I feel a million times better now, still weeping for England. I don't have to manage on my own. Shame it had to be cancer that brought me to my senses.

Tuesday, 13 September 2011

From the heart

I made this heart from the words of my blog - interesting isn't it?   I made it using Tagxedo

Sunday, 11 September 2011

So, why am I crying?

I am an emotional wreck at the moment. I keep crying over the most ridiculous things. As I have told people, someone only has to look at me sideways and the bottom lip goes. Returning to work this week has been a challenge. Everyone is being wonderful, but some parts have been quite overwhelming. So much to remember and so much, potentially to do! I am my own worst enemy in that if something metaphorically has my name on it, I like it to be excellent!

I know I was not at my best for the half year I taught in the last academic year. As I discovered, my cancer was already taking its toll on my body. I was utterly exhausted all the time and was finding it hard to manage stuff at home, giving all my energy to work.
My tearfulness shows no rhyme or reason. However, having talked things over with a few people, I can now see why I might be so emotionally fragile. Ever since I had my surgery, and started my treatment, I have just kept going, I have not allowed myself many tears. This was largely because I was afraid if I really got going I would not be able to stop! I have made myself be strong, and of course, every three weeks I was getting lots of support in the chemo unit. Now, no more chemo unit and to be quite honest, I've been strong for long enough. I have got to deal with my emotions. I've got to deal with something like a bereavement. I've lost a chunk of my life and in a way I have lost my innocence. I knew nothing of what a human body can endure before all this except through childbirth, and now I've been changed forever.
While essentially I am the same Ali, my outlook on life has shifted. Things that used to bother me no longer do. Those things that irritated me often don't matter at all. However, some things that I took in my stride do now reduce me to tears. I have many 'for heavens sake' moments at MYSELF. I'd give anything not to lose words while having conversations. I'm hoping this improves over time. I have no doubt that some of my tears are due to frustration. Frustration that I'm not yet strong enough to complete tasks like I used to be able to, frustration that my stamina has not yet returned.

The sensible part of me knows I am being totally unreasonable. The child in me says why not be unreasonable after all you have been through! The adult in me says 'Grow up!'

I do know that in time, I'll stop crying, my frustrations will ease, and I'll stop feeling so cross with myself. Until then, please stand by with the tissues...

Thursday, 8 September 2011

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...

Friday, 2 September 2011

Wait and see...

Yesterday morning, I saw my Oncologist for my post treatment appointment. I had already had results from my scan and blood tests. There is no evidence of disease (NED) from the can and the blood test ca125 is a very healthy 12/13 - normal levels are from 0 -35. All this is very pleasing, for now, my disease has been dealt with. My Oncologist explained that for the next five years I would be monitored. They do NOT routinely scan or blood test ladies who have had ovarian cancer. Instead, I am expected to be vigilant about sustained changes in my body. If I notice something then I must contact my Macmillan Nurse as soon as I can, I will then be seen in clinic. I was also given a challenge by my Oncologist to reduce my weight before I next see her. My next official appointment is in three months.
There was one slightly scary part to my meeting yesterday. I was very unwell after my last chemo, the side effects were horrid. This evidently means that SHOULD I need chemo again, I will have to go to Northampton as an inpatient to have my treatment. Let's hope that does not happen. After the appointment Mr G and I headed out for another of our little road trips. We went to Market Harborough where we had a delicious lunch. I tried to enjoy it completely but unaccountably I found myself weepy and tearful. I think it had struck me that my watchfulness is going to have to be lifelong. This is daunting. I know I will process this and get on with my life in my usual full on way. Because I was teary, Mr G texted his Mum, (my Marmee) to ring me and talk to me. It was a joy to hear her tender voice counselling me to be calm and that I was not alone in all this. I almost immediately felt much better. We spent the afternoon at Foxton Locks,
this is one of our favourite places. We fed the ducks and enjoyed a cup of tea.
So, this is the end of treatment, my job now is to trim up, get active again. I am sure returning to work on Monday will get me more active! I shall be very busy. Go me!

Wednesday, 24 August 2011

A lovely surprise

This lovely surprise appeared in my Inbox yesterday. As regular readers will know I love roses, so my friend Jules sent these to me. She also did some of our Wedding photo's which were truly gorgeous.

These roses they will never fade
always bright and clear
will brighten up your desktop
bring you a little cheer!

I spent the afternoon today
working on these three...
specially for you Alison
with love to you from me xx

Jules xx

If any of you would like to see more of Jules' work, look here   Post Box Prints

Sunday, 21 August 2011

Spots. lumps and hospickle!

Having thought I was through with many things hospickle, my body decided otherwise. While quietly sitting on the sofa watching a Harry Potter film, my face suddenly felt as if it was flaming. My cheeks were red and hot and mysterious red lumps were coming up! I took my temperature a couple of time during the film and my temp was over 37.5oC. Usually 38oC is the number that precipitates calls to the Oncology ward, but continued temps over 37.5 also send alarm bells ringing. Coupling the temperature with my now alarming appearance it was time to call the ward.

A scary sight on a Saturday night.
Twenty questions or so later we were summoned into Northampton. I rapidly packed my nightie and toiletry bag plus meds, along with a number of pastimes (books, ipod, DS). Later I discovered I should also have remembered towel and toothbrush - doh!
Because the Oncology ward was very busy, we waited for the many stages of assessment to be performed. A heart trace was done and bloods taken to check my platelets and white blood cell count. The heart trace was interesting as the machine malfunctioned twice and the tracing looked as if my heart was having a volcanic event. After waiting over two hours and having no evidence of the blood test results, the Staff Nurse decided, at midnight, that I should stay the night at the hospital. However there were no beds on the Oncology ward. A porter was summoned and I, along with my belongings, was piled into a wheelchair and whizzed, with Mr G trotting along side to the other side of the hospital. I found myself in the female bay of the surgical ward. I must say the staff were fantastic and made me feel most welcome, a feat at half past midnight. As I had managed to completely miss an evening meal I was given some cheese and tomato sandwiches and a cup of milk. I was a bit beyond cheese and tomato sandwiches (as very tired) so ate about half and collapsed into bed. My night was a fairly typically hospital night of fitful, interrupted sleep. I was awoken by the haemotologist arriving at 6am to take blood from the other four women in my bay. I then had a LONG wait until midday when the house officer finally arrived from the Oncology ward. I told her I felt fine and wanted to go home. She checked with the Registrar. It was decided I could go home there and then. The paperwork was completed in about 20 minutes! It is utterly amazing how quickly some things can be done.
I'm lucky, I was in less than 24 hours. It was a stark reminder that the fat lady has yet to sing. I won't be over the last cycle of chemo until Thursday or Friday, and will be a bit more vulnerable to infection until my system completely recovers from the battering it has received.

Sunday, 14 August 2011

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.


Ali x

Thursday, 11 August 2011

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...

Thursday, 4 August 2011

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.

Monday, 1 August 2011

A wedding and other fun!

Mr G and I spent this weekend in the Peak District. We drove up on Saturday morning, leaving very early. We arrived in Buxton at 10.00 am and to my surprise and delight were allowed to book into our hotel room immediately. This meant I had a base for all my things. We had a coffee and a sandwich before we headed to the church for Smart car pictures before the wedding. Oh yes,I need to tell some of my readers that Mr G and I are Smart car enthusiasts. I have a Smart fortwo and Mr G has a Smart Brabus Roadster Exclusive. We were in Mr G's car on this occasion.

My car, Roxie.

The wedding went without a hitch, the bride looked fabulous. My hat was a huge success, I felt gorgeous for the first time in ages.
After the ceremony, the Smart car owners went off into the country for more pics.
Mr G took this picture of H & J and the cars.

We went back to Buxton and enjoyed a fantastic reception. I was able to hit the dance floor again and managed to keep going until 11.00pm! Considering I had got up at 6.00am, I impressed myself.
After a restless night, strange bed, bells ringing every hour, we decided to get breakfast early. The spread on offer was extensive so we both enjoyed a large meal fuelling ourselves for the day.
We had decided to go to the Blue John Cavern. We had both been there before, but some time ago, in other company. I vaguely remembered the many steps and was a little apprehensive. The climb down the 245 steps was not too bad, because we had stops as our guide explained about the caves and mineral deposits. My real challenge came on the climb back up. The guide had said we would take our time but I got stuck at the back of the group (because I was as slow as a two year old girl!)
This meant that I had only just caught up when we started climbing again. This escapade brought home to me very sharply how debilitating having chemo is. I was close to tears when joy of joys I saw daylight and the surface. I don't regret the visit one bit, but it was very hard. I am still sore and stiff!

Entrance to Blue John Cavern.

A view inside the cavern.

After we left the Cavern we explored Edale and then we travelled across the Cat and Fiddle road to Macclesfield. We stopped for excellent tea and cakes at the tea rooms on the way. In the evening we discovered a super Italian restaurant and had some of the best Italian food we have enjoyed outside Italy.
Today, I woke up still tired and sore but happy that I was there enjoying REAL life. We had planned to go to Chester but it was raining so we journeyed home via Lichfield. We explored the cathedral and looked round the town. My legs complained at every set of steps and up all the slopes, but I definitely felt stronger.
I am REALLY not looking forward to my last chemo on Thursday. It has been so good feeling well and being able to join in. However, I must try to remember that by the time two weeks have passed on from Thursday I should be feeling better. After three weeks have passed I should be starting to get stronger. Then I will be looking forward to enjoying some more adventures with Mr G before I go back to work in September.

Wednesday, 27 July 2011

Work, Hat and chemo talk.

Today I had my interview with Occupational Health. I was very sceptical about it, as the literature they had requested I read, had focused very much on stress related long term absence from work. As you all know my absence has solely been down to a huge operation and adjuvant chemotherapy. The woman who interviewed me was actually quite fair and was perfectly happy with my return to work plans. It appears that my line manager just wanted reassurance that the plan was feasible. I was pretty sure it was as I had researched what was acceptable before I wrote my plan.

Flushed with success, Mr G and I headed into town to look round the shops. After we parked the car, I had a narrow escape as two men lost control of a trolley loaded with packs of paper. Fortunately most of the paper had fallen off before the trolley hit me on my calf. The men were very apologetic and looked horrified at nearly injuring a bald headed woman. I've got a bit of a bruise but as I bruise if you look at me just now, no real harm done. I KNOW they will be more careful in future.
We had almost finished our tour of the shops when I spotted yet another sale. I went in looking for a bag. As I scanned the racks, what should I spot but an off white, chiffon and georgette ruffled flower confection in the sale. It is made of soft and gentle material for a softly fuzzy scalp. I reached it down and nearly trembling with excitement tried it on. It fitted beautifully and will look amazing with my frock. I shall still take the little crochet cap in case it is windy, as I can't use hatpins yet!

We headed back to the car and set off for petrol and food fuel for us. Now Mr G and I have some games we play when on car journeys. They consist either of finding cars in all the colours of the rainbow or by scoring points for colours of vehicle spotted. I believe it began as Red Lorry, Yellow Lorry many moons ago. Pink rates very highly and the bigger the vehicle the more points. As we came out of the car park and drew up at traffic lights I saw a bright pink stretch limousine - in my chemo head excitement at outstripping Mr G,
I squealed ' Mine, pink, my points there!' To his credit, he completely understood that my chemo brain could not at that moment find the words stretch limo, or even car, but could shout pink and mine!

This is a perfect example of one of the invisible side effects of chemo - word loss!
Today has been a good day. Cancer was put in its place.

Sunday, 24 July 2011

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.

Friday, 22 July 2011

Oh no! I'm stuck...

Having survived my CT scan yesterday, I spent today occupying the sofa, as has become my habit. Our sofa is a dual recliner, the seats recline manually. This is important information. In order to sit up, the foot part of the sofa needs to be pressed down by one's legs and pushed into place and clicked locked.

I have not been in the habit of reclining my part of the sofa. However my feet have been swelling badly lately so I have been resting with them up.
The CT scan yesterday was ok, I had one before but was ill at the time and I do not remember it clearly. The main problem was that I had to stretch my arms above my head, pulling my tummy down, and then hold my breath. Something did not like that - I have a tweak in my abdomen. I won't dwell on the injection that makes your mouth taste of metal cleaner and gives the sensation of wetting one's pants. My pants were and are completely dry I hasten to add!
Anyway - the tweak!
The tweak became obvious when I turned over in bed, but was not too much of an issue as I warmed up moving through the morning. It was fine as I pottered down to the Doctors with my prescription request. The tweak was fine when I had lunch and hung out some washing. The tweak was fine as I had a cup of coffee. The tweak struck after Mr G got home. Flushed with success, happy that Mr G was home, I reclined the recliner. The customary jerk backwards was overcome - I reclined happily. All was well until I decided to unrecline myself. I deployed my legs. I did not unrecline. The tweak hurt! I tried pushing my legs down once more.. I was stuck! My legs out in front of me, I was cast. Mr G was laughing.
I was getting hot and bothered. I managed to shift my weight forward into my legs. With herculean effort, and gritting my teeth through the tweak, I extricated myself from the clutches of the sofa. Free at last!
I am writing this sitting squarely on the sofa - no more reclining until the tweak has healed.

Wednesday, 20 July 2011

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

Wednesday, 13 July 2011

Full steam ahead...

Today is the day before Chemo number Five. This 'good week' I have had a fabulous time doing lots of living. The first thing was a Wedding Party in Essex. The success of my previous head decoration led me to put fake tattoos on my head once more.

What I hadn't known was that the Wedding had a butterfly theme so I was spot on. I had a brilliant time busting some shapes on the dance floor but alas had to leave before the clock struck twelve as I had hit the wall.
Sunday saw us up at six to head out to join the Tube to the Car Show. Lots of Smart cars travelling together = Tube of Smarties, get it? I had a wonderful day, lots of friends, chat and laughter.
Yesterday I had a long anticipated day at school. I had prepared a back to work plan in consultation with my Macmillan Nurse, my GP and my Head teacher. This day was about keeping in touch and looking forward to September. It was a profoundly moving day. Without exception every single child I saw said 'Hello'. Most expressed pleasure at seeing me. Many asked with happy faces if I was REALLY back now? It was with real sadness that I had to say, not yet, I still need more strong medicine. Despite this sadness, it was a joy to be back with much missed children,  friends and colleagues. I've never had so many hugs.
I spent the day separating my belongings from school resources and packed them up ready to be moved for me next week. I won't be well enough to go in and help as I will be deep in chemo week.
I have had such a good time recently that I am quite apprehensive about this next chemo. I have felt well, vigourous, and energised. Yes, I was tired after packing up my room, but as I told myself with the voice of sense that I would have been tired doing that when I am well! What will keep me going tomorrow is this vision of life after chemo I have had. I know going back to work will be a challenge, but I've never baulked at a challenge in my life. I have been reassured that I will be supported and allowed any flexibility I need to help me cope.
Two more chemo's, then full steam ahead!

Friday, 8 July 2011

Back to the future...

Recently I have been giving some thought to the future, The end of chemo is in sight. I have two more, so not out of the dark side yet. When I went to watch my two younger sisters and two nieces run the Race for Life (well, they walked but quite fast) I was an emotional mess. My sister H, was diagnosed with breast cancer four years ago, and has, since then been a tireless campaigner for Cancer Research UK. She and the others all ran with my name on their backs, the other sister and the nieces had H on their backs too. H and I have never hugged each other so tight in our lives. I was profoundly moved by their public support and by the 7496 other women who were running in support of cancer sufferers. I intend to work as an Ovarian Cancer Action Voice, in the future, raising awareness of this particularly sneaky variant of cancer. I really enjoyed the day. We had strawberries and cream and ate jelly sweets. One of my nieces decided that I should have a 55th birthday party. This would not only celebrate my birthday but the fact that I will be there to see it! While we were chatting purple artificial flowers were handed out, I chose to wear mine this way.

The other part of the future I am looking to is returning to work. I am a primary school teacher and have missed work like crazy. Plans are now falling into place. Until the beginning of this week I did not know which year group I was going to teach. To my great delight I found out that I am to be working in Year 3. This is my favourite year group - challenging but fun. I am sharing my class with a student teacher all year, which is really lovely. I am working with a fab Team Leader and super teacher colleague as well. I am going to start back in September, three days a week, for two weeks, separated by a rest day in between. Then four days the next week and full time after that. I know it might seem very early to be looking in such detail but the schools close in two weeks and all this needs sorting.
All this positive looking forward has been very good for me. When in the depths of chemo treatment it is very easy to get bogged down in it and not able to see anything positive at all. The treatment cycles seem endless and the bad week feels interminable too. The good things in the future are a very bright light at the end of the chemo tunnel. I am heading towards that light with a big smile on my face.

Monday, 4 July 2011


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... 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.

Friday, 1 July 2011

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.

Friday, 24 June 2011

Ten things I would not be without during treatment.

This is a highly personal list of things and people without whom my life would be a lot more miserable.

1. This has to be the unflinching support of Mr G, my family, and friends. Thank you all from the bottom of my heart,
2. Lemon and lime squash in bottled water. The only way I can drink water. Strangely the chemo makes tap water taste like chemo!
3. Indian Tonic Water - all of above AND it stops the cramps in the soles of my feet.
4. Lemon grass and oil shower gel - cuts through the chemo smell on my skin (there is a theme developing here!) and the little oily globules sooth the itchy dry skin.
5. Foods I can eat on the 'bad weekend' upon me now - ginger nut biscuits, Jamaican Ginger Cake, fresh pineapple, oatcakes, and raspberries. How bizarre.
6. My lovely comfy bed.
7. Crabtree and Evelyn Hand Cream (No, I don't own shares) Smells gorgeous and melt away on skin.
8. My laptop.
9. The bird feeding station I can see from the sofa. Currently hosting baby sparrows and goldfinches with accompanying adults. Ditto Starlings. A harassed looking Robin. A very fat Wood Pigeon hoovering up the scraps.
10. The library from which, two weeks out of the three, I am avidly reading lots of lovely books.

Wednesday, 22 June 2011


All my life, I have realised that most years have a soundtrack. The ones of my youth were without fail the songs I heard on the radio and at the disco. Yes, once, I was a disco chick.

In later years, with tiny babies and small children, there were the chart songs we sang to them, alongside their favourite videos. One of the songs I remember was James with Sit Down. The videos included Thomas the Tank Engine, The Care Bears, Postman Pat and The Snowman. More recently my sound tracks have included The Waterboys (I found them late), and assorted tunes which meant something to me. The year I learnt to belly dance had lots of fusion music to which I shook and wiggled with joy.
This year, I have found it difficult to listen to much music. While I was recovering from surgery, lots of music simply reminded me of the past I could not live again, or it made me want to dance which I could not do. During my chemo weeks I suffer from tinnitus and music is too loud or too muffled, and occasionally plain irritating.

pic by 0silver0

Some blogs I have read recently have talked about choosing tracks that make you feel, think and dance. I did choose some but they are not my soundtrack for now. However, I have found a soundtrack for now. The seed was planted during an episode of Homes Under the Hammer. They featured a cottage called Pippin, and underpinned the piece with part of the soundtrack to The Lord of the Rings trilogy. I was smitten, not by the cottage but by the music. I promptly bought an album of the soundtrack to the films. Achingly it took nearly a week to arrive. When it eventually plopped through the letterbox, I rushed to open it, stuck it in my laptop, and bunged it on iTunes. There was my soundtrack, reflecting, pain, melancholy, strife, struggle. The counterpoints are joy, peace, triumph, steadfastness, fellowship, winning through and ultimately fulfilling a quest. This music is perfect for me, now, at this point in my life. I can listen to this music all the time. This soundtrack soothes my soul. Have you got a soundtrack for now? Think about it...

Sunday, 19 June 2011

Never have bad hair day!

Since I lost my hair I have not been missing:

1. The daily wash and condition routine.
2. Driving to work with damp hair.
3. Trying to glue down the sticking up tuft with hair wax.
4. Trying to successfully colour my hair - I ALWAYS miss a bit.
5. Worrying about getting caught in the rain, quick wipe with a tissue
and my head is ready to go.
6. Fitting haircuts in on Saturday mornings.
7. Despairing at the ever increasing greyness.
8. Mislaying my favourite comb - I can always find it grinning at me
reproachfully, showing its teeth.
9. Wishing my hair was curly or swishy.
10.Picking the grey hairs off my black work cardigan.

I have celebrated having no hair today by having this done:

It will come off with surgical spirit, but I'm going to try to keep it until I go for chemo on Thursday.

Friday, 17 June 2011

The worst of times and the best of times.

Although I've tried to be upbeat and cheery in my blog, I think it is only fair on others fighting the same fight as me, to acknowledge that there are bad times. For me, my worst times have been when the chemo has made me feel really poorly. Sickness and nausea are very debilitating. When it occurs at night, the hours drag by, and I can say I've never felt so lonely as during those times.
Another low spot was when I wanted to do my share of chores, and I tried to make the evening meal. I managed to get the meat out of the fridge and into the oven, I managed to peel potatoes and carrots. However when I tried to cut up an onion and the other vegetables for the dish of roast veggies I planned, I could not press hard enough (or safely) with the knife. I was too weak from the chemo to do a simple household task. I wept buckets, it was so disheartening. I do now have a more realistic view of what I can do and when.
This week, I have had one of the best of times. A very large, very old tree in a park near my house was being felled. The 'elephant tree' was between 150 and 200 years old and as an easily climbed tree was very popular and was part of many happy memories. I went to watch along with quite a few others. I sat next to a blonde lady and we started chatting. She used to live in my close, but had moved away. With no hair, it is obvious that I am not 100%, and she asked what cancer I had. I told her, and she said she had lost her Mum to the same thing 18 months previously. We chatted, had a cup of tea, chatted some more, and quickly became friends. We found that there were all sorts of coincidental or synchronous things in our lives from names to dates of birth. Last night, we found out via social media, that one of my chemo sisters was my new friend's Mum's best friend! It is a small, small world.
My disease is awful, the chemo is awful, but I have found wonderful, wonderful new friends and that makes this the best of times.

Tuesday, 14 June 2011

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.

Saturday, 11 June 2011

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.