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