Agadiar in Morocco

View from the balcony:

Yes we could see all the way out to sea, the hotel was right on the promenade but in its own grounds (which were very well kept). Food (good), drinks (plentiful), hotel (lovely) and just a short walk to the main town. Overall Agadiar was not a sprawling place and there was a marina, souks, cafes, restaurants and the mad taxis!!! Oh the orange taxis are an experience in themselves (these are the petite taxis for 2 / 3 people), however you may have to hang onto the door in case it falls off!!! Seat belts are optional (or not there!), and there is no clear give way on roundabouts - on the plus side, they are cheap and cheerful.

On our way to Essaouria (4hour drive by coach), we saw goats climbing trees to eat, camels in the wild and `park and ride`donkeys; yes people park there donkeys and get a bus to the nearest market, then on there return load there donkeys and head home (can we have this service for Waitrose? - well it would be carbon neutral). It also seemed that people lived in the middle of nowhere and we saw people just walking eventhough we seemed not to be near a village or town. So you see a `basic`side of life and the souks reflected the local peoples life of going to the market daily. Essaouria old town was pretty, with walled souks, fishing marina and a slow pace to life. On the other hand Marrakech was full of hustle and bustle with mopeds, donkeys and people busying themselves in the central area of Djemaa el Fna. The souks were busy with traders making leather goods to welding, and you certainly got fresh chickens, take your pick from the cage! (well it is better than having them sitting on the self covered in plastic for a week!!). We saw Riads (which were like boutique hotels), the Bahia Palace and the 11th century Koutoubia Mosque. People dressed in traditional cloths (djellabas), snake charmers and too much more to mention. We ate chicken, lemon and olive tangine, couscous and fruits - the meat was really tender, but the mint tea was an acquired taste.

Yes at times I felt tired and that is when Andrew and I put our feet up with a glass of wine or two in the hotels pool bar. We a laughed lots, met some really nice people and the locals were really friendly. Only one more thing to say - we missed the kids and would love to go back and see more of Marrakech.

What trip can I plan next?

Love
Kathryn X

Morocco a very different place to visit.

Beach at Essaouria



Near to Djemma el Fna Marrakech

Sun and Sand.....go away rain!

Morocco - Well I have been given the all clear to fly, so Andrew and I are off for an adventure to Morocco. For some sun, sea and plenty of sand!! (well there is a lot of dessert in Morocco). Not sure about bartering for goods in the souks - we are not use to that in the UK. The guides that I have read say to "do it with a smile, and be friendly", ok, but can you walk away if you do not agree a price?

The kids are happy for us to go away and it is our treat for being together 20 years; a little holiday on our own to make more happy memories. Though I know that I will really, really miss David and Harriet - the chatter, laughter and the hugs (love them so much!!).But they need there space to grow as people and maybes cook other things apart from pizza or fish fingers and chips!! I am sure that they will get `adopted`when we are away and be offered meals (bless).

On the way back Andrew and I are attending the Sarcoma UK conference for group facilitators/managers in Manchester. So we are going to hit the Trafford centre to do some late Christmas shopping - well I never do it early, you miss all the madness then and no excuse for regular coffee stops.

Love to you all (and cross everything that we get sunshine, please!!!).

Kathryn X

Emotions of living with the C word.

Well I feel no remorse at saying that I am living with cancer and am even happy to joke about looking so `well`. But I think people must be very naive to think that despite my smiling face; that there is no emotional impact on me as an individual. At times I want everything to go (not sure how to explain this???), just RIGHT and people to have a happy time together. But equally those expectations can affect my mood / or impact on others when my `expectations`are not met. If this upsets people, then I am truly sorry - but realistically do you know how you would react in THIS situation (yes I can cry and sometimes shout!! - better than having a complete breakdown I feel).
I feel that time is short for me and I want everyone / everything to be happy - but realise that these are unrealistic expectations and life goes on, in a normal roller coaster way. I do not want to burden people with my emotional feelings and the only real people who I truly speak to are Andrew, Harriet and David. Why should I complain? Friends and family have there own problems - without me adding to them.

Frightened that friends and family will leave us - when I show visible signs of being unwell. So put on the makeup and the smile!!

Love

Kathryn X

p.s. please feel free to post comments if you read this, it is always nice to hear from people.
p.s.s. More Sarcoma friends have been diagnosed as palliative care, makes me sad that they are also getting that news. Sending them virtual and real hugs and love XX

Remaining Breathless

Finally had an appointment with the Asthma specialist and had to huff, puff and blow into a variety of strange machines (red faced and puffed out cheeks is not a good look for any lady!!). Anyway they told me (what I could have told them !!), that the breathlessness and wheeze are down to the combination of tumour in upper right bronchus (blocking the airway), and the possibility that at times this is irritating the asthma / or creating infection behind the blockage. So basically there is no radical solution, or magic wand, or amazing cure!! Ok so they gave me an extra inhaler - but that is just to see if it helps; and no guarantees there.

Felt rather deflated (ha, ha!!) at this news; this damn cancer is taking my breath away - literally and there is very little that I can do about it. Just take the medicines and try and not rush too much and hope that I can stay away from hospital and any further breathing problems for as long as possible.

Trying to remain up beat and take each day at a time - but when you are not sure how well you will feel from one day to the next it is often difficult to plan things. However I will endeavour to carry on paryting for as long as I can stand (and that is with or without the alcohol!!).

Love

Kathryn X

p.s. I know that Andrew is finding this news hard - we all would like a cure, but have to face the future regardless.

Mexican madness.

Harriet `Zorro`

Mexican 20th Anniversary Party!

Well we celebrated our 20th wedding anniversary with a Mexican party; with tequila, sombreros, ponchos and red chillies!! I even managed to make some tequila sunrise cocktails, arriva!! Friends came from the north and south and Andrew and I were so happy that everyone wanted to take there time to celebrate with us. Friends dress up in the Mexican theme and Geogina came as tacos, there were cowboys/girls, Harriet and Jennifer opted for the Zorro theme and Andrew dressed as a Red Hot chili!! We have some great photos that John took of the evening which captures the true party madness - people laughing, drinking and having a mad time.

Thanks to all those that bought pressies (you shouldn't have), now we have a great stock of champagne for Andrew and I to enjoy on our weekend away in Windsor. It was great to see everyone and thank you all for making it such a wonderful evening.

Love to you all

Kathryn XXXX

Brompton and lets have a look down there...open wide!

Well I went to the Brompton in London last week and had the lovely Dr Sharv do my bronchoscopy (wish I had more sedation!!!); and yes I did look at the images on the screen when they where doing the procedure. As I have posted before - my asthma and bronchus tumour have been causing me some trouble breathing / wheezing, so the procedure was to hopefully try and see if any of the tumour could be removed to alleviate some of the symptoms. They tried to perform cryotherapy (basically freezing away some of the tumour), but this was unsuccessful. However the report clearly states that the left upper bronchus is occluded - which could lead to infection building up above the occluded area and / or irritating the asthma. Unfortunately Leicester have been unwilling to move on treating or seeking treatment for my asthma (which is very, very frustrating), just keep popping me with pill and steroids. The Brompton stated that I now need to see and asthma specialist (with experience of lung tumours), and in the meantime they have given me a more effective inhaler (why could Leicester only say...."come in to hospital if you get unwell", I want to stay OUT of hospital!!). Anyway I have asked my Oncologist at Leicester to refer me to the Glenfield team (Leicester), but in my heart I feel that I should go down to London and seek out the best information and advice from the specialists (with more experience), in treating/dealing with Sarcoma.

At times I feel very frustrated that I have to ask all the time for information and seek out possible answers from London. Thankfully the Marsden and the Brompton Hospitals have been absolutely great in communicating with each other and giving me the best advice regarding managing my symptoms.

Love and Hugs to you all

Kathryn XXX

BIG hugs to fellow Sarcoma people who are on the roller coaster ride that is cancer.

20 years....can I get a `get out of Jail Free`Card??

Well in October it is our 20th wedding anniversary....and we still like eath other (well most of the time!). Andrew has been such great support over the years, listening, laughing and sharing in the madness of life.
Anyway some friends were round for a meal recently and in the conversation I stated that I had a bottle of tequila that I did not know what to do with (ok I know that you can drink it...but I did not want it to be that simple); so we decided the best way to use it was to hold a 20th Mexican Anniversary Party!! So Poncho's, sombrero's and false moustaches at the ready - though I will avoid the hot chillies and leave that the the madder members of my family (namely - Andrew and David). Andrew and I have also booked a couple of nights away at Windsor; I wanted to see Windsor Castle again, and Queen Mary's dolls house - and a good excuse to have a glass of wine or two and a trip on the river.

Do not want to talk about the Brompton visit at the moment, but feeling ok.

Love

Kathryn XXXX

Messing about on the water, Splash!

Andrew and I had a great day out with friends on there canal boat, slowly travelling up to Market Harbrough for a lazy lunch. The weather was kind to us and the sun kept popping out to say "hello" and it was lovely to be so close to nature - saw a green woodpecker and a Swan with her signets (though they were quite large). Had lots of laughs with Jill and Geoff (innuendo's and craziness, laughing), and it was good to see that Rosie and Jim kept Jill company on the boat, bless you have to laugh!




I was not brave enough to have a go at steering the boat - or going to the tiny loo!!

Love and laughter

Kathryn X

Scans, plans and no planes!

Well got my CT scan results - which show no growth in tumours (which is good news). However I have mentioned my wheeze and breathlessness and this is both irritated by the left bronchus tumour and asthma. At the moment there is a shadow, which they are putting down to an area of infection. So back on more meds (druggie!!), and still using nebuliser. The asthma is obviously not happy but the LRI hospital are waiting to see what happens at the Brompton next week regarding my bronchoscopy - Will they do anything? Will they put a stent in? Will they remove some tumour?, these answers can not be given until they have a look inside. So Leicester have finally mentioned the possibility of referring me to an asthma specialist - though still playing the usual waiting game at the moment.

It is a good job that I probe and ask questions - as some patients would get nothing done. However my consultant Oncologist has informed me not to fly at the moment - boo!!! As Andrew and I where looking to head somewhere sunny for a week to celebrate our 20th wedding anniversary in October. Hoping to still do something nice, mad and a involving food, wine, laughter and a sprinkling of history.

Harriet and David are both starting back at college this week and I will miss them being around. Very pleased that they are both doing `A`levels and glad that I have those sort of exams finished!! Though as parents you still go through the stress with them, and there mood swings and all you can do is support them the best you can. Oh and have family madness time!!

Hugs

Kathryn X

Tired!!

Well I have been awake since 3.30am,(now 6.45am), anxious about getting CT scan results on Monday and the fact that my wheeze and breathlessness has come back. Feeling disappointed as I had a really good week the week before and felt quite well.

Back on steroids - which make my face swell and ache, but breathing better. Hoping that something will be done to help my breathing when I have my bronchoscopy at the Brompton on the 14th September. Or different medication can be discussed - that may help.

Anyway must try and get some ZZZZzzzz, I think I feel tired again.

Oh Matilda the musical is coming to the RSC in November - I love Roald Dahl books, The Twitts and The Revolting Rhymes are the ones that made me really laugh.

Luv and going to count sheep!!
Kathryn XX

No Pain!!

One thing that I really, really wish from this cancer was that the pain was taken away from my family and friends. I hate to hurt those that are close to me and know that telling my Father that I have a limited time on this earth will a) not improve our relationship, b) not gain any help/ support for my family/friends; therefore sometimes you have to keep the stark truth from others. - that is my way/ there perceived way of coping with the uncertainty of CANCER!!!

Should I keep the truth away from others to avoid hurting / upsetting them?

Not any easy question for anyone to answer - but it really upsets me hurt those emotionally that are close to me. Andrew is hurting so much at the moment and is worried about what will happen next - sometimes it is very difficult to look to the future too far; as it hurts him to think that I may not be there (and it hurts me too!!!). But life is for living and laughing - which is what we generally try to do, but just be aware that we can have our down days and we are not brave, or special - just trying to cope with the uncertainty of cancer. Like many other people in the world who cope with the uncertainty of terminal or debilitating illness and cancer: we smile and are joyful for today and like our friends and family to smile and enjoy time with us.

Love and hugs to you all

Kathryn XXXXX

Vodka and Orange !!

Well feeling a little better today and decided as I have finished my antibiotics (they were huge!!), to have a glass or two of vodka and orange. Ok - does the orange count as part of your five a day??? It tastes good : )
Poor David did not do so well in his A's levels and is looking to beg - to stay on for the next year. I love him so much and try to support, praise - but he and I know that he has not put 100% into studies. I asked whether my cancer was an issue and he said that he found it difficult at times (putting on a brave face!!), and not wanting to upset friends / talk to them. We are all guilty of putting on a brave face; I went to a funeral today (for the lovely Lillian - Jill's Mum), and saw people there who I had not seen for quite a while. Yes I smiled; and when ask "how are you doing? ", just said well Ok or fine. It is difficult to know what to say when you know that there is no cure, one day it WILL get me and the damn Sarcoma is living with me!!! I just can not bring myself to say - yes I am fine thank you (what would you say???).
Anyway had a lovely chat with Andrew - planning things for the near future. We may get a break away for our 20th wedding anniversary (wow that time went quick!). But I have finally got another appointment for the Brompton - 14th September. So feeling optimistic that they will do the bronchoscopy and it help my breathing.

Anyway going to enjoy time with my family, love to you all

Kathryn XXXXX

Causing trouble again!!

Andrew & Me at Scarborough, July 2009.

The things I do to get attention.
Well I decided to visit friends in the sunny region of Costa-del-Scarborough with the lovely David (he was not hanging around with Mum though, had `cooler`friends to see). Saw the sea, had scampi and chips (Oasis bar on the North side - it is a legend), played with Shaki (the dog), etc... But started to get more breathless towards the end of the weekend; and could not walk more than 100 yrds by the end without wheezing. Felt very anxious in my in bed on the Sunday night; as all I could hear was my own wheezy sound! So rang my local GP to make an appointment for my return on the Monday (why are Doctors receptionists impossible to talk to???), anyway managed to get an appointment for 4.30pm with the dutie doctor. Tried not to panic Mandy (who we where staying with - but needed to get home), or David about how bad I really felt and was worried about making the car journey home.
Thankfully we got home in time to make the 4.30pm appointment - listened to my chest, took temp and blood pressure and declared that he could not make a decision about whether to admit me to hospital until he had contacted my Oncologist team (oh that was helpful then!!!). But said that he would advise me to go home and rest and he would phone me shortly. Later I was advised to go straight to the Oncology ward for assessment - oh and yes I was admitted. Wheezy, breathless and a temp of 37.5 - advised to rest, take antibiotics (which were huge!!), and a nebuliser 4 times a day. The lower bronchus tumour combined with asthma (tumour irritating this condition), was clearly causing me problems. So poor Andrew came home from work that day to greet the lovely me; followed by "you have to take me to hospital".
Originally they suspected a pulmonary embolism, but after two days of tests they ruled that out and I finally escaped the madness of an NHS hospital ward. I have to say that there were approx 4 - 5 nurses on each shift, working on a 28 bedded busy Oncology ward. Who felt very frustrated at times that they did not have a moment to spend time with patients. Remember everyone on that ward was facing cancer and emotionally vulnerable - thankfully the ladies in my bay tried to have a joke.

I was due to go down to the Brompton on the 16th August to have a bronchoscopy to see whether they could relive/remove some on the tumour in the lower bronchus. But obviously with a possible infection in the lungs this has been cancelled. I have to confess that I am both disappointed and frightened that this has happened - why? Because the wheeze, breathlessness has been getting worse over the last few months and breathing is a vital part of life (excuse my humour). At the moment (1 week after discharge), I am starting to be able to go up the stairs without problems and am not coughing as much. But the distance I can walk is still limited; or the activities that I can do before it affects my breathing is limited. Who knows what the future holds? But on the other hand do I really want to know too much about what may or may not happen.

Kids now officially call me a `drugy` and whilst on my nebuliser I am "smoking the dragon", well at least it make us laugh.

Love to you all and I hope to be drinking wine and partying soon.

K XXXX

Sleeping after holiday : (

Well holidays are great for relaxing, laughing, drinking vino and eating Moules et frites (lovely and juicy in France!!!), But home coming and cancer do not mix. Feeling rather low after such a great family time and now facing my `cancer demons`again. So up to usual trick of not being able to or willing to go and have some ZZZzzzz (sleep), at night. I just want to keep awake and experience life!!!

Sleep is needed ....but I fight with it at the moment. Also after a week at home the wheezing and breathlessness has returned. This obviously makes me anxious; as breathing is essential to life!!! (well you still have to laugh - sorry for my strange humour).

Going down to the Brompton on the 17th August to see Dr Shan (lung specialist), hoping to do a bronchoscopy and look at taking away (part - not all) of the tumour that is obstructing the lower left bronchus. Nervous about the procedure, hoping it will help and that I will be out of hospital on the same day!

Slightly confused that Leicester have refused to do this procedure (at the moment), though in my mind I know that the Brompton / Marsden hospitals are specialists in the area of treating Sarcoma patients. As they have links with other world wide teams, as demostrated in the getting together of these professionals at the recent British Sarcoma Group Conference in London (Medical profesionals from USA, Milan, France, Germany etc), sharing there knowledge and expertise. So I can only presume that the Brompton have more experince (eg, treat more than 100 patients per year, compared to lower numbers in Leicester; also being a relativley new Multi diciplinary Team).
Anyway I was disapointed, but need to try the `best`treatment in order to try and manage this damn cancer. As I said to one friend - at least down at the Brompton/Marsden I can contribute to there findings / reseach on Sarcoma and beenifit patients that way.

So to end this blog - I have decided to go and see my mad (but not bad), friends in the North. Taking David with me so that he can experience the party life in Scarborough with Nicole. Catch up with Mandy, Annie and hopefully Ruth - catch, laugh and try to forget that we have know each other for "How many Year???".

Love and laughter

K XXX

Madness in France!!!

Had some great food and enjoyed time with `Timmy one claw` (Shrimp), but did not eat Colin et frites!!!


Sometimes in this mad world of Internet, TV, texting and constant barrage of information - the simple things in life can still be fun!!! We went to France (Vienne - region), and one of the best days we had was going on the Velorail. Consists of a contraption with 3 seats, and 2 bike pedaling seats and basically we had to pedal (taking turns), on a disused train track for 9km. Then rest - those that had done all the work; namely Harriet, David and Andrew (oh and it was 29 C in the sun!!!), rested before making the 9km journey back. But we laughed (mainly at our lack of fitness - though we did beat the French couple!!), enjoyed the scenery and the exercise. So I'd like to say that it was absolutely BRILLIANT to get away for 12 days from computers, TV's and enjoy simple times with my mad family.

Love you all
XXXXX

Holidays!!!

I was really worried earlier in the week as I was feeling very breathless and could not walk upstairs, without getting breathless. Thankfully I went to see my Doctor and he prescribed some steroids - feel better and can now manage the stairs "whoopee!!".
It has been a made panic this week trying to get ready for the holidays; as Andrew has been away working since Monday. So David, Harriet and I have pulled together to pack, clean, shop and get drugs for the trip to France. Andrew is due back tonight at about 8pm, then we all have to get up to set off for the Ferry at Portsmouth at around 3.30am (AGGHHH!!!!).

Hoping that you are all making time to enjoy time with your family's, as life is short and I love to laugh, sing etc with my friends and family.

Love to you all

Kathryn XX

What to tell the kids?

LAST WEEK - I am not sure how the conversation started but I told David and Harriet about the choices I faced regarding further treatments. They said that it seemed, at times they felt as though they were being kept out of the picture; I said that they could ask questions at any time and nothing could upset / hurt us more than us having to already live with this cancer. This was accepted and they wanted to know how long I may have left (well how long is a piece of string?); my answer was that I really could not tell them that and neither could my Consultants. However it was highly unlikely that I would live beyond 5yrs, there response was amazing;
Harriet said - so David has to find a wife and have 2 kids before he is 23yrs old!!, as at the age of 16yrs I can not take that responsibility on!!.

Well we did all laugh and thought it was a jolly good idea, (in theory!), and David said "so no pressure on me then???", quick go and find a nice girl to be your wife and what a chat up line "can you marry me", wow slow down!!

Anyway it just goes to show that we have been open and as honest as possible throughout this cancer journey for all of us. Also some how we have still held on to our strange and sometimes wacky humour - keep smiling folks!!

Love K X

Summer is here!

Well we have been enjoying the good weather and looking after a friends dogs, Boris and Dylan - they are truly mad Yorkshire Terriers, but fun to be with. Andrew has managed to cook 3 BBQ's which is three more than we had last year. Bless, he even put out salad, dips and buns etc (as I hate getting all the little bits ready), and not a burnt sausage in sight!!

Getting ready for holiday in France - we did not get chance to go away last year, due to hospital visits and treatments. So it will be really nice to spend some time together chilling by the pool, sipping wine and trying to remember the French words for things!!! (oh what fun).

The kids are both off college and finding it difficult to get out of bed at times - I was like that at there age, but do not tell them that!! Poor Andrew is still getting up early for work and is not in holiday mode yet and no doubt wishes he was off spending time with us mad bunch at home.

Creating little people!!

Harriet trying to paint the `little people`, one splodge or two??? It is rather difficult and it would be easier to dip them in flesh colour - but Andrew did not want nude little people!!

Decision made!!

Finally took the BIG step (after a few tears), to take retirement on the grounds of ill health, (still sounds rather bizarre still at the age of 44yrs). Lots of forms to fill in a `hoops`to jump through (no doubt), before I get there; however I will not be returning to work in September to work at the college.

Well on the plus side:
- no more meetings that go on and on, then someone dares to pose a question just as the meeting is about to close!
- no more lazy (and sometimes very good), students to persuade to meet assignment targets etc.
- no more marking and re-marking of assignments.
- no work deadlines to meet etc.

However I have had a really positive working experience at this college and will miss the colleagues that have supported me, laughed with me and been a great working team. Raise a glass to the `A team`!!

Trip to the Royal Marsden.

Andrew and I went to the Royal Marsden last week to see the Sarcoma team (they are world specialists - Professor Judson and his team), armed with my new CT scan and as always hoping for something positive.

Well is it the human spirit to try and find a positive? - even when things are looking grim!! Luckily I have always thought that things could be worse as I have continued to try and live life since being affected by cancer, thinking "why not me", no one made that choice or was chosen and my cancer is not related to any life style issues that I may have.

Anyway unfortunately we were not see by the Prof himself; however the left upper lobe mass has increased slightly since April (lesion extends into the left main bronchus), but has remained unchanged since the finish of radiotherapy at the end of March 2010. The other mets in the 4th rib remain unchanged - so at the moment the disease remains stable. However there is still concern about the lungs mets invading the bronchus and they have suggested a bronchoscopy (for referral to Brompton Hospital), this has been affecting my breathing and I find it difficult when tired or climbing inclines / stairs etc.

So the final step in my cancer journey will be to go on Yondelis (trabectedin) chemotherapy and this has been proposed to my Oncologist.

Cancers form when cells within the body multiply abnormally and uncontrollably. These cells spread, destroying nearby tissues. Trabectedin works by stopping the cancer cells from multiplying. It does this by binding to and damaging the DNA in the cancer cells. This stops the cells from growing and multiplying.

This drug would be administered every 3 weeks (providing that I have no adverse side effects), and can be used indefinitely. This is a palliative option and will hopefully help to manage the disease and slow its progression.

How do I feel about this? Just can not put it into words - How would you feel about this being your last chance? Not sure what to say to the kids - although they do know that I can not be cured. What do I say to them? I can not give them any time line of how long I may have left to be with them - sad and frustrated that I am not going to be well again.

Those precious times with family and friends are really important and I can only try and enjoy these times. Create happy memories that I can hold in my heart and hopefully these people will not forget me.However I do not want to be remembered for "being strong", (what else can I do - lay down and let this damn cancer win, NO!!!), but for being an individual who laughed, shared happy times and loved those around (OK drinking wine and coffee too!!).

Sending a very BIG hug to all those that read this blog.

Thanks

Kathryn XXXX

Proud Dad.

Such a great photo - taken on a lovely day. So proud of how David and Harriet have turned out, and Andrew has been so supportive, I love them so much.
Memories of very happy times that fill my heart with joy and love.

XXXX

Fathers Day Fun!

Well we have all had a mad weekend together. Firstly on the Saturday for Andrew we decided to go and visit Oxford (well I'm a Morse and Lewis fan!), and see the colleges etc (oh and called in to a railway model shop). Andrew was happy to get a few extra bits for his LARGE train set in the loft and I said that he was "still banned", from putting train track etc above our bedroom extension. This may sound cruel; but he did put his foot through our newly painted ceiling (whilst I was doing my hair in the bedroom mirror), I can not repeat what I said at my surprise at seeing a foot appear!!
Anyway we did laugh at remembering this and I was reminded that I had promised to paint some `little people` for Andrews train layout (they are tiny!!), so the picture is of Harriet and I attempting to paint these tiny figures. I did offer to dip and strip them in a nice flesh colour - little nudist people!!! but Andrew was not too keen on this.
On Fathers day we all went for tea and cakes (well coke, coffee and lemonade - with cakes), and sat in the sunshine talking and laughing. Looking around the plants we decided to buy two lovely frogs (well Harriet is mad about frogs and they did look cute!). They are proudly installed in the garden (see photo above).Oh and David did a cooked breakfast for us all, (with the help of Mum doing the eggs!!), anyway it was a great start to the day.

Sarcoma UK and Trust.

Well the East Midlands Sarcoma Support Group had there charity Curry night on Monday 17th May. After lots of preparation (and thankfully some help this year!), we managed to raise just over £2200 for The Sarcoma Trust. The event was attended by 76 people and the auction alone raised over £1400 - I feel so honored to be part of such a lovely bunch of people that attend the support meetings in Leicester. Importantly we do not feel alone in fighting this cancer "Sarcoma knows no boundaries", and although we are all unique in our diagnosis / sites of tumours etc we continue to support and raise awareness of Sarcoma. At present we have over 26 members of the group in Leicester / Nottingham and that does not include young people / or children that have Sarcoma's in the county. Young children and adults are often having to go through very major surgery / chemo to try and fight this (some with debilitating surgery); we do have one lady who attends the group who lost her son at the age of just 18yrs.
So yes we will continue to try and support the research / drugs trials into treatments for Sarcoma - as at the moment there is not specific chemo treatment with more than a 20 - 40% chance of working (and this is only on certain Sarcoma's - mine is not one of these).

I am still joint list mamager for the Sarcom UK email site, but am struggling with this at them moment. Supporting those that are also in a difficult place is difficult, and I too never know whether I am using /saying the right words. Also emotionally not sure if I am strong enough to carry on this work at the moment. But will take my time in making the deciosn as to whether to simply just carry on as a member - they have certainly offered me lots of friendly help / advice and support since 2006. Especially good advice given when having the thorocotomies - exercise to get those lungs working!!!

Going to be now, night , night and love to all. XXX

Sun and Indian food!!

Well the sun has been out today (hip,hip, hurray!!). David was home early from college, so took time out to spend some time with him. Went to Wistow garden centre for coffee, cake, oh and a walk. We talked and laughed and I am so proud of him as he is such a nice caring lad...cares about his friends, family and sister, bless!!!

Later Andrew came home from a London meeting and we all took time out to not cook (not even David or Harriet!!!), and went to the local Indian to eat. Harriet looked so beautiful in her dress - smiling and laughing. David enjoyed a pint of larger and Andrew a hot curry (brave man!).

By the way - Harriet made a great toad in the hole last night, thanks bean XXXX

Having a positive day today and enjoying the sun, but honestly, thoughts about this damn cancer never go away. The breathlessness is worrying me as if it does not get better over the next two weeks; the oncologist said, then it will remain as it is (and also, as I am aware get worse at some point). I have not seen friends from the North since I had my radiotherapy and it is difficult to explain how the wheeze and breathless has affected me - not quite like ashma (can never spell that word), as inhalers give very little relief. Anyway had to cancel my trip to the North (oh I still love Yorkshire), and am hoping to go next week.

Little things that can make you smile!

Well I have had my down day, so now its on the up (back to the mad me!!). Spending time with friends and family can sure make me smile. On Saturday the sun was shining and David wanted to spend some `family`time together (I am so please that he still wants to do this at the tender age of 18yrs!). So Andrew, David, Harriet and I all put on our sunglasses and popped to the park area at the college and spent time throwing the Frisbee (well I was not so successful as I am on the WII), and kicking a football. It was great seeing the lads having a kick about and laughing together, especially during the stress time of exams for David. Harriet was happy sat in the shade watching, at times joining in and talking to an insect(well if that makes her happy!!!). Anyway it was great to spend this simple time together away from the house and the call of housework or studying, TV's and computers and we all come home SMILING - joy!

Going for check up with oncologist today - so crossing everything XXX

I do not want to upset anyone!!!

I may have my down days,but believe me I do not want to upset anyone. I can not predict my illness - however I know that my breathlessness is not good and am trying to face the possibibility that this will not get any better - but what do I say to people??? They always want the good news !!

Down time : (

Well I am human after all and therefore have down times. Made the mistake of reading the `Death notices`today, (not sure why I do this at times), to see if anyone was younger than me and see what they say about that person. Found one that was aged 47yrs and seemed very close to home - could that be me? Or will I be younger?

Made myself very sad now and do not want to leave my family, Harriet, David and Andrew behind. Would love to meet grandchildren and to spoil them (well that's what Grandma's and Grandad's are allowed to do!), oh and before that see the kids wed (or whatever they intend to do). But I suppose the BIGGER picture is that I am hear NOW to love them and spend time with them and my friends.

Will friends still want to see me when I'm not well? Or when I am finding it difficult to cope? This will probable be the time when I `hide away!`.

Not sure if I will be able to sleep tonight; probable getting stressed as I have my checkup this coming Monday to see whether the radiotherapy treatment has been affective.

Family and remaining happy.

Well we did have a great time in London together. Harriet and I managed some shopping (well she spent my money!), and the boys did electrical/computer shopping. Then in the evening we went to see Billy Elliott - the kids dancing was absolutely amazing!!! Afterwards Andrew, David and I went for a curry at 11pm at night, (it can only be done in London, Harriet retired to her room, bless!).
Saturday - went to the tower of London (the sun was shining, wow!), it was an amazing place and we all enjoyed the experience. Amazing history.

This is all about trying to make happy memories - moving away from the illness and cancer for a day or two can lift the spirit. We are great together and have lots of fun and laughs and it is important to have time together to do this and get away from exams, work and cleaning and washing of the house. The illness will never go away but I can still laugh, be mad (nothing new there!!), and enjoy time with family and friends.

Harriet and David make me laugh, and equally when they spend time together like this there relationship is stronger. OK they can gang up on Mum and Dad - but hey whats wrong with that in a fun way.

love you lots Andrew, David and Harriet - life is great with you around. XXXX

Lovely Evening in the Yorkshire Dales at Easter.

We had a great time visting Auntie Pam - and what a great view this is from her house and the pub is only 100 yards away so cooked only ONE meal (joy!). Spent time shopping in York - well Harriet and I shopped till we dropped; then called to East Ayton to meet friends for a mad lunch (Anne, Ian, Matt, Becka, Danniel, Mandy, Dad and Andrews Dad). What a fiest we had!!

Wheezie Me!! and my lovley family.

Oh well the zapping has done something...made me wheeze and cough (and I don't smoke!!), well they did warn me that this would happen. Any walking any distance can be difficult at the moment. But still can manage lunch with friends and a laugh (generally at my own expense.
Well the other day the neighbour was having the front garden tended to by a nice gardening man. Andrew, Harriet and I where sat on the settee - so I turned to Andrew and said "I think I'll go and ask that man if he will trim my bush", it was not until Andrew and Harriet stopped laughing that they pointed out the error of my ways. I can't help being a little innocent sometimes!

Family - Harriet and David are both stressing about forthcoming exams and I really hope that they both do there best; it is never easy to study. Unfortunately Harriet's boyfriend has just finished with her tonight - left the house saying "I don't want to go", then sent her a text later saying they should finish. Confused young lad I think - well it confused me as well!!

Andrew is on the overnight Ferry back from Amsterdam - thought he might phone again, but he might be stuck at the Bar.

Anyway looking forward to us all going away to London this weekend. Stopping in a hotel one night, and going to see Billy Elliot / Tower of London Saturday. Then off to Sandie and John's to have drinks, put the world to rights and play with the kids.

Anyway need to go to bed - meeting Sian for a breakfast get together tomorrow, well it will be 10am (that is breakfast time for me!!!).

Zapping!

Well I started my two weeks of radiotherapy treatment on Monday 12th April. They are zapping the lung tumour as it is starting to obstruct the Lt bronchus and is causing me trouble breathing, wheezing. Have been told that these symptoms will get worse at first, but in the long run I should see some improvement - lets hope so!

As usual I am not allowed to use soap or perfumed products on the area that is being zapped, so we have Simple soap and lots of cream to rub into the skin. At times my back feels as though it is burning and seems to be worse at night - so I sneak down for some co-codamol and a coffee.

Anyway had a great day yesterday spending time with Harriet, chatting and eating cake at Wistow garden centre in the sun (yes the SUN). Had a walk around and Harriet took some lovely photos of the flowers. Last week Harriet got offered a place to do `A` levels at QE (which is a really good college), however Harriet had stated that she may prefer to go to Regent (not so good!!). Anyway we discussed her options yesterday and stated that she wanted to try and study photography (as well as English, Maths, phycology and Drama). We look on the college web sites to see if both colleges offered this option - and QE college course seemed to offer the best choice for Harriet. So after some negotiating (well life is all about negotiating and choices), it was agreed that Harriet go to QE - YIPE!!!
Iam so pleased as I think that should my illness become more of a problem to me I feel that Harriet would get the best support / help from the staff at QE; although I never mentioned this as I did not want it to be one of Harriet's deciding factors. Well now it is time to study for both Harriet and David - so stress and hormones for the next 6 - 8 weeks, try to buy lots of ice-cream and diet coke to keep them both happy.

Easter Break.

Well we finally all got away together as a family; the first time since August 2009! We went up to Yorkshire to stay at Auntie Pam's - laughed, ate, drank and had chill out time together. Then over to York for a few days, which included `girls`retail therapy, meeting friends and Andrew and I had a night out together in York at The Indian lounge (great food, miserable service!!).
Although I still had trouble sleeping, I really did appreciate the time that we had together and it was great to see the kids and Andrew relax, joke and laugh with and at times at each other. We ate too much food as usual - but at least I got out of cooking. One mad day was when we met with friends from Scarborough and Malton (you know who you are!!), and we had a lovely meal together at the Denison Arms (East Ayton), great food and excellent company - have not laughed so much in ages.

Spending time with the family whilst I was (reasonable) well made it very special, the good weather and great time with friends and family also made it a very memorable time. I know that I can not escape the though of `cancer` and the worry of what may happen next, but I can try and live for the moment and carry on laughing and loving.

Thanks X

An Ode to Friends.

Oh I am so glad for friendships - you make me laugh, support me when I am down and most of all share your life with me. Thankyou to all those that have taken time over the last few months to still ring, call, email and pop round to see me. These simple things to you - have given me pleasure and most of all it is GREAT to know that you care.

Love to you all X

Photo: Murder Mystery Night, New Year 2009, Ali, Me, Harriet and Jennifer.

Harriet and I - oh and I have hair!

What next?

I have not posted for awhile - just could not face my thoughts / emotions. But feeling very `numb` as on the 15th March we received the following information from the Royal Marsden:

Your latest CT, performed in January, does show some growth of the tumour in the left upper lobe and also a fractional increase in the size of the tumour in the skull. There is evidence of tumour spread to at least two sites in the bones, i.e. the left side of the pelvis and a left-sided rib. These are not new and are currently stable. What we have had to address is whether major, potentially disfiguring surgery could possibly be curative, and I have had to conclude that in view of the very widespread nature of your current disease, this is not the case.

This was not what Andrew and I where expecting - surgery was no longer an option unless it was impacting on my overall function/quality of life. As for the mets in the ribs / pelvis - why had these not been pointed out before? Why oh why not mention them - just wish that people could communicate and be more thorough in there approach to patients. We have feelings and this news is important and I feel betrayed that this has been kept from us - well it was not as if we had not asked for all the information at each visit (aah!!!).

Iam, like many, dealing with cancer feel very sad that I have to put my family through this cancer and wish it was not happening and that I could take away the pain. But Andrew has been brilliant and is starting to share his emotions / hurt and frustration. As for the kids we have kept this recent news from them until we have more detailed information from the Oncologist as to CT reports/treatment options for any progression of the disease. Yondelis has been suggested, but we have to see whether any of the tumours are growing etc.

At Night

Finding it difficult to relax and at night I wake frequently - not fretful, but unable to turn the brain off! So have decided to take time off from work to try and sort out my life for `living` and living it I will continue to do. Stress is not good in any situation - so I have eliminated work stress for the time being. Doing lunch with friends, wine with others and looking forward to Easter holiday and a few nights in York with the family. I will carry on laughing and loving to the best of my ability and hope that friends and family can support me in my normal `insanity`.

Laughter is GOOD for you!

Great day!

We all went to Birmingham for the day ... shop till you drop! It was great fun and we managed to all visit the shops, and even the lads managed the cloths shops!
Stopped for lunch and sat talking and laughing...mainly at Harriet's boyfriends, Davids job and my madness (oh and Andrews mad moments). But a good time had by all and not mention of the C word!

Chemo follow up

Following 5 sessions of chemo I had a CT scan to see whether the tumour were shrinking...no. So I had already made my mind up that I would not have the 6th session of chemo if this was the case and thankfully my Oncologist agreed. I just could not face chemo that was not benefiting me and it had seemed like a long time since life had been relatively normal (whatever that is??). Thankfully I had come through chemo relatively well... sore mouth, no hair (which had some benefits - no shaving and cheap on hair cuts!!), and of cause the nausea. The worst part though was the stay in hospital - as I was relatively well and put with patients who were often near the end of there options (to put it bluntly), this was upsetting. Also is brought home what I may be facing in the future with this damn cancer; yes I do get annoyed with `it`. When you are at home or work you can forget for a while about this `cancer`, but being in hospital makes you face the facts that you DO have sarcoma and this treatment is possible a palliative option. The stark reality is that you are living with cancer. God that hurts at times...what else can I say.

After my follow up at the Marsden in January - went to see Mr Rhys-Evans
(head and neck man), and was hoping for some positive plan
regarding treatment for temporal tumour - but he said NO to operating as I
have mets elsewhere and it would not prolong my overall
survival. Basically this is a major op and they are not willing to risk it -
unless my symptoms become worse i.e. loss/change in vision, more pain
etc. In my heart-of-hearts I was reluctant to go through this major surgery
and you might wonder why? - long term problems afterwards (risky),
putting myself through this only to face more and more surgery or treatment;
having to go to London and leave my kids to have this
surgery. But having that decision taken away from me - has shocked me.

Feeling sad that I am hurting my family by putting them through this (and
I know it is not my choice); worried about what effects the tumour will have
when / if it pushes or invades the brain area. I have been told that it is
highly possible. How long can I work /drive?

My eye area is a little puffy and I get pain and areas of lossed sensation -
which at present is manageable. I am trying to remain focused on day-to-day
living, but finding it really hard in going to work. How do I go to work and
pretend that everything is normal? People's expectations of chemo is that it
WILL kill the cancer and
you'll be ok. But like many others on this list we know that this is not
always the case and the other option is to be `living` with the cancer.
Everyone
wants a `cure` - but I know that this is not the case for me - just how do
you try and get that across to other people? I do not want there sympathy -
just a little understanding that I am trying to live with this - but
sometimes I will not find it easy.

Second, third ...fourth opinion.

Leicester Hospital said palliative care, but Andrew and I wanted a second opinion (not wanting to give up a fight). So we asked The Royal Orthopedic for there opinion and they basically agreed with Leicester...once again it felt like a slap in the face, how could we tell the children this or indeed anyone else close to us as a family.
After a few days and some tears later, I decided to try and ask Prof Judson at the Royal Marsden for his opinion; thankfully my Oncologist supported me in this decision and it was only a matter of weeks before we were seeing the man himself in London. Now this man has an amazing brain...you can almost see the cogs going round as he contemplates the decision making process. But he never lets you feel uninformed and is very happy to answer questions, he did say that I was a complex case and that there was no clear right / wrong course of treatment to take. Eventually after some discussion it was decided that I should have Dox / Ifos combination chemo to try and double `zap` these gremlins. With the long term goal being to try and shrink both tumours in order to offer the best option of having surgery to move either / or both.

What's happened.

Well in June 2009 I returned to hospital for investigations following neuralgia pain under my left eye. Had a CT scan and was not unduly worried about the results ...as I have had sinus problems and ear infections in the past and associated the pain as something involving either/or both of these areas.

At this time I had not long started a new job Lecturing/Assessing at a FE College and was looking forward to giving up my post at Coalville and joining the new team. I felt very happy at work (which I had not felt for a long time), and was looking forward to the new challenges that my new role offered.

However when I went for the CT results at the beginning of July, Andrew and I were not prepared for the news that was to be delivered. A recurrent tumour in the left upper lobe (in contact with the upper lobe vessel), and more surprisingly a mass involving the left petrous temporal bone (head).
Notes: (greater wing of the sphenoid adjacent to the lateral wall of the orbit).
My initial reaction was...what are they saying? ...are they talking about me?...what do I tell the children now? and just fell into a state of shock, complete and utter shock!! Especially when we were told that neither was operable and I should go away and enjoy life ...but surely they could do something? They mentioned palliative care/treatment - but I just could not take it all in and wanted some `hope`. In my head I was screaming "please offer me some hope!!!", but I could not speak and over the next week could not talk this cancer. The news was hurting me, but I felt so upset to have this inflicted on Andrew, David and Harriet - I did not want anything more to hurt them. I had been fighting this cancer since 2006 and felt that they deserved a break...we had had 11 months without operations/treatment and I was starting to feel positive about my future and living without cancer. Alas we can not choose our path and it was clear that `living with cancer` was now my option/path.