Be careful with those old bones!!!

Well as I said I have been having pain in my upper arm and hip; finally had a bone scan last week and was called into an emergency appt this Tuesday.

After the pain increasing to a point where I am now on morphine and struggling to do tasks - they agreed also to X-ray both areas before my appt this week.
Then told me that I have a tumour in my left humerus bone (very invasive and not rushing to operate on due to my lug / bronchus mets), and mets in
a bone in pelvis area which explains the pelvic/hip pain. I will be having radiotherapy to both areas and they have fitted me with a cast/splint to my left
upper arm to offer support / prevent a possible fracture. I have been advised to wear it at night as well (not very sexy)- but am just getting use to the day time first and may need that extra support during radiotherapy. They are trying there best to allow me to still have movement to allow me to drive etc for as long as possible - yeh I like to have my wheels !!

After radiotherapy they may consider looking into surgery further - but I would not be eligible for a spinal anaesthetic as it would be too high a position in my back, and not sure if my lung function would allow for a general anaesthetic. Blood iron low so on iron tablets as well and rattling with all the medication.

I just feel as though it is all not real at the moment - why do I keep having unusual mets? in silly places that they do not expect and because Epithioloid
Sarcoma is one of the rarer Sarcomas there is even less research etc. Anyway I really do not know what to say to family and friends - as I gradually
become more disabled by this Sarcoma, and get tired easily; yet put on the happy face and try to live normally, with laughter and the hope to try and fight on (feeling sorry for myself and those close to me - sorry).

You may well ask "what next?"; but do not be afraid to ask me questions or talk about the `C`word - we all need support.

Luv XX

Counting the Pennies ....not the cakes eaten!!!

Well the Charity Cake and Book Sale went really well. Lots of books were donated to sell and many a person made cakes....we had lemon cake, carrot, chocolate, fruite and coffee to name but a few; not forgetting the sparkly cupcakes which looked too good to eat!! We raised £336 to be split between Sarcoma UK and Macmillan and a jolly good time was had by all those that attended and helped at this event. Time to chat with friends over a cup of tea, eat cake and choose a good book. Yes these simple things in life can still make people happy.

We also had some great support from members of the East Midlands Sarcoma Support group - donating cakes and time to help; and thanks also to friends and family for there support.

It took us three days for the family to finish the Coffee cake that I bought, but it was really yummie !!! Oh and we have a whole load more books to read...so who's going to make the coffee??

Luv
Kathryn

I would like to be a bookworm!!

Well Sian, Claire and many other little helpers are getting ready for our Charity Cake and Book Sale on Saturday; raising money for Sarcoma UK and Macmillan. So many people have offered to make cakes and donate books that I am getting worried that there will not be enough people to buy the cakes and books (help!!). So posters have gone up and I hope to get some publicity via the local radio station - so cross your fingers that people come and buy, buy, BUY!!

Donating the money to Macmillan is close to my heart as many people I have known (including myself - well I should know me!); have had access to there services and support. As you all know I am a member of Sarcoma UK and they have been a tremendous support to friends with sarcoma, and are key in raising awareness to gain a quicker diagnosis / referral from GP's.

Anyway the pain is still a part of my life and so I rattle with more pills and potions; though I have decided not to take my sons advice to sell some of my drugs on ebay, eventhough we would all like a nice holiday!
The medical team have finally decided to try and investigate the pain further and are sending me for a `glow`in the dark test (a bone scan); shame it is not Halloween next week I could have made a fortune.

So on a daily basis I try to escape the big `C`word, but the pain follows me and reminds me that the gremlins of sarcoma are still with me. I plan events, lunch with friends, mad nights at the theatre, cinema trips with daughter and try to party when I have the energy. However the best escape is a good book, a mystery or thriller and a twisting plot that keeps me guessing. Roll on Saturdays Book and Cake sale when I can once again become a book worm.

Kathryn XX

p.s. David, Harriet and Andrew have shown me so much love and laughter this week; madness rules this house as always.

Strange things happen ...but true!

So went for the results of my scan....(what will they say? will it be good news/bad?, how will I feel this time?), the tumour in the lung has grown (small amount - but great in terms of my ability to breath!!), and somehow they say that the disease is STABLE!!! ( that does not make sense if they say it has grown), and in the next breath discuss the possibility of me going on final treatment Yondelis (trabectulin chemo); so they seem to confuse me as to whether it is stable if it is growing!!! So the oncologist at Leicester is changing jobs and seems rather disinterested in patients and there problems. When we discussed the breathing issues - well there is nothing further that I can do / you may end up with another problem next month (so what if I do!!! It is all about obtaining a `quality`of life !!). I want to have minimum pain / breathlessness and to try to live with this cancer "So please help me!!". Thankfully my GP and Macmillan Nurse are great and support my views on `Living with CANCER`. So the Morphine has been subscribed....apparently good for breathlessness! and the lactose for constipation (oh such joy!!): and I am medicated and going forward,even managed wine with friends tonight (late night had by all!!! - thanks!!).

Have moved forward with the help of the local hospice and GP team - might not be able to talk much to you kind people as I do not want to upset/burden anyone. We all have problems and I have those day to day as well as the C word - so do not feel as though it is difficult to talk about your problems or happiness as I want to share me life with people.

Love to you all

Kathryn X

Carry on Life!

I am trying to take my mind of the results of my CT Scan, so doing lots of things and out and about (despite not breathing too well). Went to a Burns Night; which we have never done before and had a great time with friends. The Haggis was piped in by a man in a kilt, and we had Scottish shortbread and a little wine to wash it all down.
Then last weekend the boys went to London to celebrate the end of Davids current exams (and to share a few pints together), apparently they did a lot of walking to see the sites and met up with John later to have a Curry. Harriet and I had Anne and Rebbecca to stay and the girls went shopping. Anne and I did some searching on the Internet for holidays, Jersey looked nice and not too far to travel. So yes I am still dreaming of holidays and am actually having a night away tonight - with my cousin Bev. We are going to Stratford-on-Avon for a night; to chill out, laugh and have a little madness.

Luv and laughter to all

Kathryn X

If the Rain Must Fall ...

I was listening to this song the other day and for the first time it `grabbed`my heart strings!! The rain may fall in our lives and :

Oh life can be strange
Good and bad in so many ways
And in time you will find
That things are not always what they seem ...

Words from - James Morrison - If the Rain Must fall:

But if the rain must fall
If I lose it all
If the world comes down
and takes my soul
And theres no, no way back
It won't matter much to me
If I had you
All I need is your love
That's all I need
All I need is your love ...

http://www.youtube.com/watch?v=QqJyz1lPN7U

Without the love and support of others then this cancer would have been nothing but a BIG grey cloud, but thankfully times have not all been grey and as a family we have still had sunshine, happiness and a dash of madness.

I especially dedicate this song to Andrew; who has shared in my `rain`and still given me love, David and Harriet for continuing to make me smile, love and share happy times. A special mention to `looking good Babe` for helping me to laugh in the face of the silly cancer.

So lets continue to party to the end ....and mines a large Cabernet savignon please!!

Love
Kathryn X

Well what can you say??

Felt quite strange when I was told at the Marsden in December that my disease was `stable`at the moment. What does that mean? - well nothing much is happening as far as they are concerned and the CT shows very little or no change. However I did not jump up and down with glee (no not the singing programme type), but felt rather deflated. Why? - because I have been here before and it never seems that long until this damn cancer does throw something back at me. Also to be honest it did not help that we had lost three friends (who I had made through setting up the East Midlands Sarcoma Support Group), to this damn disease in the short time period of 8 weeks. So how come I am so good at cheating death at the moment?? Though to be honest I can not dwell on this for a long time as I am happy to be alive, laughing and loving and do not want to waste precious time. Those that we have lost were people that `lived life`and enjoyed it and we joked that the party must go on if someone dies. I truly believe that those that we love never leave our hearts.

So a couple of weeks ago I was feeling increasingly breathless (walking 100yards or upstairs), went to the doctors hoping to get some `magical`antibiotic. NO, that was not for me - so I go back to the Oncologist and they suggest an emergency CT scan (well as an outpatient that is within 2 weeks); so once again I am back to being a medical mystery!! At this point I would like to swear but you will not be able to hear me, so I will simply say "crap!!".

I have kept this new information rather quiet, because life is not just about me - David and Harriet still have exams, Andrew is just changing jobs and the cooking, shopping and general everyday life still goes on (with its little hiccups and concerns). So if you read this and think that I am being brave, just remember that I am human and still get upset / sad.
But I also want to share in your life experiences whether that be good news or bad, laughing or crying, and do not forget the partying.

Love

Kathryn X

p.s. Andrew has man flu, but is still giving me cuddles, laughing and sharing jokes with me and the kids. I love him so much XXX

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