Fact of Fiction?

Thought I'd just go straight for the facts, but I'll start tonights post with a hubby update.

He is doing very well, and was back in the office on Monday, his only concession was leaving for work at 8:15am instead of 7:30am. The four 'wounds' are healing well and other than being a bit tired by the evening (as normal then) he is making good progress.

I fear that he thinks he is now in competition with me as regards stomach scarring, but of course, I am the outright winner in that department.

Now, down to business and some 'facts'.

I saw KG at the hospital on Tuesday afternoon, she told me that they had all talked about at the morning's MDT meeting.( A Multidisciplinary Team Meeting is a meeting of the group of professionals from one or more clinical disciplines who together make decisions regarding recommended treatment of individual PATIENTS. Multidisciplinary Teams may specialise in certain conditions, such as Cancer.)

It seems I have a 2 cm tumour at the original site of my last operation. (Not entirely sure why it wasn't picked up eight weeks ago as that's when I had my CT scan, but hey). Further discussion led to my surgeon at the Marsden stating that she did not advise another operation as it was difficult enough first time around and obviously only got partially removed. It is near the aortic vein and wrapped around the renal vein, and she didn't want to risk me losing a kidney.

It was suggested that I have a PET scan mid August at the Marsden, and if that shows there is only the one area of cancer there is a possibility that I could have radiotherapy. 

If there are various 'hot spots' of cancer then I guess chemo is the answer. 

It feels like I've been diagnosed all over again.

I was going to write a lengthy blog post with quite a lot of ranting and raving about the unfairness of it all, the anger, the resignation and the general sadness, but other than the red ink writing I'm not. 

I'm going to say a big thank you to my lovely husband, daughter and particularly my sons who have mopped up a few tears, given me hugs and told me I was doing "Fantastically well", and I had to live one day at a time. 

I can't change the past, you know if I had known about this wretched carbuncle of a tumour before I went to Oz that would have marred my whole holiday, so it's just as well I didnt. 

So to recap, the facts.

I will have a blood test in August, plus get a date for a PET scan. I will have an interview for a BRCA test.

WHAT ARE BRCA1 AND BRCA2?

The names BRCA1 and BRCA2 stand for BReast CAncer susceptibility gene 1 and BReast CAncer susceptibility gene 2. BRCA1 andBRCA2 belong to a class of genes known as tumor suppressors. When functioning normally, these genes help keep breast, ovarian, and other types of cells from growing and dividing too rapidly or in an uncontrolled way.

When certain changes or "mutations" in the BRCA genes occur, cells are more likely to divide and change rapidly which can lead to developing cancer.

I have been trying to get tested for this since I was first diagnosed , simply because If I find I do have one of these, then it's possible I have passed it onto my children. Forewarned is forearmed. I also need to do some research into my family history to see if there is a link. So Donna  ( my cousin in America) if you are reading this, I will be in touch. 

Finally, I am also going to have another mammogram as it's been four years since the last one, now, that does make me smile, I am sorry for all you well endowed ladies out there, it is painful, but it's also very uncomfortable trying to squeeze a small pancake chest into that machine. Last time they bruised my ribs!

"At times our own light goes out and is rekindled by a spark from another person. Each one of us has cause to think with deep gratitude of those who have lighted the flame within us"

Albert Schweitzer (1875-1965) 

Nobel Peace Prize-winning medical missionary and philosopher.

Sunday 26th June 2016

Another short update on the 'patient', who as it turns out is not very patient at all....Having spent the last four years moaning at me when I've been "operation incapacitated" and  I'm grumbling frustratedly about the house , he is WORSE !!

He was dressed by 10:30am on Saturday and waited at the hospital until he'd had a blood test and was allowed home at 4pm, he has been told not to lift anything heavier than a kettle, and not to drive until he can do an emergency stop.

That's about it, told the nurse he had painkillers at home, that's all he needed,  and couldnt wait to get back and make a 'hot' cup of coffee and nice bread toast!!

The seemingly constant football matches have kept him amused, and of course he has never let the ipad out of his sight. I hope to goodness he didn't send any emails in his post op state. He was hilarious...I won't embarrass him by repeating some of the conversations, but Bex and i found them highly amusing.

Apparently he is going into work tomorrow...

Changing the subject, we had my lovely nephew and his girlfriend come to stay in our mad house for a week, they left yesterday, I still can't believe he is forty, I keep thinking of him as an annoying teenager, (mind you he is still annoying).

 However he created some stepping 'stone' logs in the wood which was helpful...

 And made me take this pic of the back of his and KC's head....

 Think i prefer the previous picture....

I cant find the picture of the family altogether enjoy the Fruits de mer we had on father's day.....that'll have to go on a later post.

Finally and briefly I did speak to my consultant on Friday, she had spoken with JB from the Marsden, and he basically said, no to chemo as it would make me very ill and wouldn't work ( nothing 'as yet' to 'grab' onto.... and possibly a CT scan in two months with another blood test, in other words 'monitor' the situation.

I did wonder if I should have a PET scan (Positron emission tomography (PET) uses small amounts of radioactive materials called radiotracers, a special camera and a computer to help evaluate your organ and tissue functions. By identifying body changes at the cellular level, PET may detect the early onset of disease before it is evident on other imaging tests.)
Obviously there is a risk as with all scans but i thought id just ask, I really hoped there would be some other type of suppressant hormonal based drug, but there doesn't seem to be, and while I'm not symptomatic, they advocate to just leave it. Physically I seem fine, mentally that's tough.
The loss of two good friends earlier this year plays on my mind a lot, and I know of many good people also in similar situations to me.

They (both hospitals) are talking about me on Tuesday, so maybe a few more answers to those questions. 

Penultimate photo is of Steve and i at the finish of the LG ten mile walk last week...

And of course a photo of the 'birthday girl....

Lastly thank you all for your messages, both Steve and I appreciate your ongoing support. :-)

Don't mention EU ......

I'm not mentioning referendum or Leaving the EU or anything else political, there's enough discussion going on in this house as it is.... I will post photos of my lovely nephew and his girlfriend who have been here a week staying with us shortly, but just thought I'd do a speedy update on Hubby's operation today.

He went into hospital at 11am, and we thought he'd be going down to theatre at 1:30pm, but it was more like 3:30, so late coming back. He was sleepy but seemed OK, they took a couple of attempts to get the cannula in the back of his hand ( welcome to the club ) , he also had a 'bleed' but they said they'll explain tomorrow when he's a bit more "with it"!


Least it was keyhole so healing should be quicker .....





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46 and Rising

That's the latest CA 125 result, not the weather. How do I feel about that? Resigned is the first emotion followed by a whole heap of others, and as the consultant said,  much as you carry on with life it never goes away.

I never made it into the hosptial, KG called me up at lunchtime and we chatted over the phone, she said it could be far worse (true) but we are no longer in the 'safety limit' of under 35.

There will be a conversation she will have with JB from the Marsden as to his view regarding treatment, and a follow up meeting next Tuesday, where hopefully I will be 'talked about'.

I really do NOT want to 'monitor' the situation, it's only going to get worse, judging by the rate it happened at the beginning of 2014, and what is the point of having repeated blood tests to find out something and not act on it?

There are drugs out there, not all of them chemo drugs, I wish I could have been taking some sort of inhibitors like the Tamoxifen that breast cancer patients have, especially as the last horrendous operation only partially removed the tumours.

Anyway, no point in looking back, and certainly no point in being miserable, life is for living, so let's KBO.

Pics from the fabulous time away....

Tuesday 12th June

Somewhere in the air between Hong Kong and London.

A whirlwind forty eight hours in Hong Kong, and now on our way home. It's hard to believe that we've actually been to the other side of the world, and I have to keep pinching myself as I never thought I'd really get the chance to travel long distance .

One of the very best things about this trip , and there have been very many is that I have felt just like a 'normal' person, ( friends don't mock me!) I have gone days managing to not think about me and Cancer. Don't get me wrong, I'm still thinking about my dear friends who are ill, and those who have recently passed away, and feel very blessed that I have been able to make this trip with Steve.

I have enjoyed ALL of it, although the flights leave a lot to be desired, and there were occasions in the sweltering humidity of Hong Kong that were uncomfortable to say the least, but the sights, sounds, smells and friendly welcoming people have more than made up for it.

That's one of the troubles really, now I feel like I want to explore other places and cultures! I do think that for the next few months at least I'll stay at home, it's been quite a hectic past eight weeks.

I've got a blood test to have next week and a hospital appointment on the 21st June, Steve has his gall bladder operation on the 24th of this month, ( it'll be a change for me to nurse him instead).

Before all of that we have a busy few days ahead of us, duties at St Martin's school, the Lieutenants Governors walk on Saturday, ( we start at St Catherine's this year and walk to Les Fontaine, only ten miles......of steep hills and cliff paths !!) . Plus my nephew and girlfriend arrive for a "weeks holiday" , little do they know they're on the job rota.

I believe the RJA & HS have their show this weekend, and of course it's Father's Day on Sunday. Papa has been very busy whilst we've been away, tending to the vegetables and dog sitting duties, well, that's what he's telling me.

I think I have exhausted all of the Cathy Pacific's film repertoire, I've done a fair amount of reading, and lots of standing up in small confined spaces stretching my legs, scared witless of getting DVT, taking aspirin to keep the blood thin, and drinking lots of water.

To be continued .....

Finally arrived home at 9 pm last night, a very long journey 😊

Holiday snaps to follow !!!





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Saturday 11th June

Writing this post from the hotel bar, waiting for the taxi and watching the rugby on the TV.....well, the hubby is watching - he's a little bit sad as the match is just been played down the road and he wanted to watch it at the stadium! However we heard that the tickets were "extortionate " , so maybe it's just as well .

I have had such an amazing week, and can't begin to write down all the adventures I've had, and a lot of what I've done has been free ( thanks Brisbane!)

I did a four hour guided walk on Monday with a lovely lady called Jude and learnt heaps about the city, ( photos to follow no doubt) .

Visited the museum of modern art, and again caught up with a free guide, informative insight into the aboriginal art, ( and how badly we treated these indigenous people, although every Australian I've spoken with feels the same) .

I've been on a free 'city hopper' ferry down the river, the weather was beautiful, in fact it's been very good since we got here.

My friends sister (!) very kindly took me out for a coffee to the top of Mount Coot-tha, about 20 minutes away, where there are fabulous views over the whole of Brisbane.

I've looked at monuments sculptures and historic buildings, been in the QUT ( Queensland University of Technology ) and had a cup of tea in a powerhouse on Newfarm park ....

I've taken a bus to Lone Pine Kola sanctuary and seen kangaroos, duck billed platypus, and the Tasmanian devil, amongst other species that they are helping to conserve. ( Although the kangaroos are an attraction they are more of a pest out in the wild, than a conservation project) .

On Thursday Steve finished 'work' a bit earlier so I dragged him to the City Hall where you can go up in a lift to the bell tower , before the CBD ( Central Business District ) got so full of skyscrapers you had amazing views!! The lift itself could only hold a maximum of 8 people so you booked a slot, and it was an updated original version , which was quaint . Plus they had a museum, well worth a visit, and a huge auditorium which had just been renovated, took them three years maybe(?) and a cost of over 312million.

Just boarded the flight, and the captain has just introduced himself as Jack Frost ....

A very kind lady has just swapped seats with me, in order for me to sit next to my husband ( as opposed to across the aisle ) , I think it was for my benefit but Steve is pretty sure that she didn't want to be squashed next to a large sweaty English /Jerseyman for a whole nine hours ( and possibly a snoring one too!)

Talking of which , one of the Adelaide politicians was a young Scotsman , still with an accent, a bit bizarre to say the least.

We have arrived in Hong Kong, it is 28 degrees, 7am and raining !!!!

I buried my lightweight waterproof jacket haven't never used it in Brisbane and didn't expect to have to use it in HK, so as the taxi is now stationary as there seems to be either roadworks or an accident I thought I could finish this and hopefully post when I have wifi.

The hotel is absolutely lush, and despite the weather ( and our tiredness ) we have been out and about catching ferries across from Kowloon to Hong Kong and watching dragon boat racing, big carnival been here this weekend and lots and lots of Chinese enjoying their time off from work .

Walked quite a lot sightseeing ( I've been dragged away from shops!) and sampled some of the local cuisine, eaten some delicious noodles and dim sum, and now back relaxing and catching up with emails.

Only a full day tomorrow and then we fly home on Tuesday .... 😎






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Location:Brisbane

Saturday 4th June

Flight CXO157
Currently at an altitude of 35,000 , flying at a speed of approximately 500 miles an hour and at last finally nearing our destination, Brisbane.

Having watched four ( or is it five?) films, eaten three 'meals' and drunk copious amounts of water I think I've had enough of airlines/airports and travelling!

It also happens to be my eldest sons 29th birthday today, ( I'm not sure I'm entirely still in the 4th June, it maybe the 5th now in which case it's my great nephew's birthday !

We left home on Thursday 2nd June, although even that simple trip to the airport nearly didn't happen!

A large coach full of tourists had broken down ( brake failure...thank goodness the driver discovered it before he got to the hill or that would have been horrendous) and had pulled up directly across our exit. Fortunately he was able to edge forward enough for us to get the car past.

A short flight to Gatwick, and then a transfer to Heathrow, with an overnight stay and a lunchtime flight out to Hong Kong, about 11 hours. Four hour stop in Hong Kong, and a mid morning flight over to Brisbane, another eight and a half hours.

At least I've had the time to find the missing photos and now hopefully add them to the post.... Here is the motley crew from last weekend.. Can't believe it was only last Saturday we sat around the huge table and had supper...

Ignore last bit,had to remove photos in order to post....



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View from the lounge ( thanks for that idea LW) at Hong Kong airport .
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Wednesday 1st June.....Summer???

The weekend in pictures...well, some of them, I can't find the others, swallowed up by the computer...

Thanks for the comments, and good holiday vibes... :-)

 From Middlesbrough...to Derbyshire

 Friday night

 Sunday morning...

 Thors cave in Manifold valley

 Just me went to the top!

 lunch with the girls..

Pretty self explanatory...
And a good time was had by all....