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