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