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