The scan was ok, just about ok. I tried to be relaxed about it all, chatted a bit, got told to shut up(in a nice way) as I was making it hard for the "diagnostic medical sonographer" or ultrasound technician to measure it.
He also took videos. I knew by the amount of area he was covering that it was in fact larger than I thought.
I came out of hospital and went straight to play racquetball - crying is exhausting and know I'd rather use my energy on playing than weeping. This works for me.
I did manage to then have a brief chat with KG. She has already been in touch with the Marsden requesting a meeting... we don't know how long the waiting list is, and not sure I should be waiting 'weeks' anyway. Especially on yesterday's findings.
I believe the tumour is about one and a half cm wide and over three cm long, travelling up the left hand side of my neck.
I will hopefully find out more details on Monday- I think it would be wise to start the chemo fairly soon, but still aim to get over to London ASAP.
- What day is it?
- It's today, - squeaked Piglet.
- My favorite day, - said Pooh
Saturday, 25 March 2017
Wednesday, 22 March 2017
Hooray for today!
Yesterday was not a good day. Yesterday I fell, badly. A long way. In fact all the way from the top of my fictional rollercoaster to the bottom.
It started ok with a lovely long dog walk along the cliff paths, windy, but in sunshine. Then I went to a friends funeral. This was not a 'good' funeral, she was only 41 with two young children and a husband who loved her very much.
This was a very, very sad funeral. I've not seen the church at St Martin so packed since last Christmas, and thank goodness for the choir, as nobody sang. It's difficult to sing when most people are crying, including me.
Thank you TE for sitting next to me, made it all slightly more bearable.
Feeling very emotional and totally drained I went off to the hospital for my blood test results and a chat with KG. Chat? I couldn't string two words together.
My CA 125 has gone up again to 42, that's in about 6 weeks, so rising fairly fast. The rest of the the bloods all seem fine and my low white cell count is marginally higher than it's been in ages.
The very big question is Chemo now or Chemo later, lots of discussion and even hauled NB in from Oncology (which was a very good idea, even though I felt as if sometimes we were talking about 'the third person'.
It feels as though the decision on when to have the Chemo lies with us, and we're just not sure. On one hand have it now while I am still fit and 'healthy', and able to cope with the side effects. Or do we wait until my CA 125 is very high and I'm showing symptoms.
This however could be dangerous, we could delay too much and if the tumours ( we assume there's quite a few scattered around) cause major disruption to internal organs I may not be able to have chemo, and so thats curtains for sure.
The chemo itself is not without its own issues. The more you have ( this would be my third lot) the more chance of an allergic reaction, never mind the reasonable high risk of me becoming very ill, neutropenic and dying anyway.
Either way there was a feeling of sad resignation in that hospital room, Frustration tinged with sadness, for all of us, searching for the right answer but going round in circles.
I am having this ultrasound still on Friday, just to measure this tumour in my neck , so we can monitir it. Also I think Steve and I will go over to the Marsden and talk to Oncology over there, I feel as if it would be good to show my face and make sure "they don't forget me, and write me off".
I know the hospital and everyone here in Jersey are doing a brilliant job day in day out, but some of the new cutting edge stuff, trials and treatments are in the UK , and I need to become known, talked about and generally make a nuisance of myself ( yes, I know I'm good at that).
Thanks SW for meeting me after the hospital appointment and sticking me back together, and also thanks to AB for the beautiful flowers today, plus numerous cards and texts I've had along the way.
Steve has, as always been brilliantly positive, strong and level headed, and so I'll end this blog with a line or two taken from a 'gratitude' book I was given by AH a long time ago.
Most of the things in life we have no control over-but we do have a choice about how we see them.
Accept the love of others as they can give it-this is the way to experience unconditional love.
It started ok with a lovely long dog walk along the cliff paths, windy, but in sunshine. Then I went to a friends funeral. This was not a 'good' funeral, she was only 41 with two young children and a husband who loved her very much.
This was a very, very sad funeral. I've not seen the church at St Martin so packed since last Christmas, and thank goodness for the choir, as nobody sang. It's difficult to sing when most people are crying, including me.
Thank you TE for sitting next to me, made it all slightly more bearable.
Feeling very emotional and totally drained I went off to the hospital for my blood test results and a chat with KG. Chat? I couldn't string two words together.
My CA 125 has gone up again to 42, that's in about 6 weeks, so rising fairly fast. The rest of the the bloods all seem fine and my low white cell count is marginally higher than it's been in ages.
The very big question is Chemo now or Chemo later, lots of discussion and even hauled NB in from Oncology (which was a very good idea, even though I felt as if sometimes we were talking about 'the third person'.
It feels as though the decision on when to have the Chemo lies with us, and we're just not sure. On one hand have it now while I am still fit and 'healthy', and able to cope with the side effects. Or do we wait until my CA 125 is very high and I'm showing symptoms.
This however could be dangerous, we could delay too much and if the tumours ( we assume there's quite a few scattered around) cause major disruption to internal organs I may not be able to have chemo, and so thats curtains for sure.
The chemo itself is not without its own issues. The more you have ( this would be my third lot) the more chance of an allergic reaction, never mind the reasonable high risk of me becoming very ill, neutropenic and dying anyway.
Either way there was a feeling of sad resignation in that hospital room, Frustration tinged with sadness, for all of us, searching for the right answer but going round in circles.
I am having this ultrasound still on Friday, just to measure this tumour in my neck , so we can monitir it. Also I think Steve and I will go over to the Marsden and talk to Oncology over there, I feel as if it would be good to show my face and make sure "they don't forget me, and write me off".
I know the hospital and everyone here in Jersey are doing a brilliant job day in day out, but some of the new cutting edge stuff, trials and treatments are in the UK , and I need to become known, talked about and generally make a nuisance of myself ( yes, I know I'm good at that).
Thanks SW for meeting me after the hospital appointment and sticking me back together, and also thanks to AB for the beautiful flowers today, plus numerous cards and texts I've had along the way.
Steve has, as always been brilliantly positive, strong and level headed, and so I'll end this blog with a line or two taken from a 'gratitude' book I was given by AH a long time ago.
Most of the things in life we have no control over-but we do have a choice about how we see them.
Accept the love of others as they can give it-this is the way to experience unconditional love.
Friday, 17 March 2017
March 17th .... 2017
Five years ago this month I was over in the UK having surgery- I was fearing the worst, and sure enough my fears were confirmed, it was a cancerous tumour.
I had high hopes that I wasnt going to be a statistic, that I could be in those few percent that BEAT this disease, despite being a late stage 3.
The recurrence some 18 months later was therefore a massive blow, and I quickly realised that I was in for the long haul. Another big operation, not entirely successful and with complications, followed with more chemo.
Last year radiotherapy for five weeks, and so far this has worked extremely well, but such is the nature of this beast and its ability to move onto other areas of the body, it seems to have travelled up to my neck.
We do not know anything for sure.
I had a blood test Thursday, and I am due to see KG on Tuesday, I also have an appointment next Friday 24th March for an ultrasound ( on my neck) . Not as invasive as a CT scan, and whilst it won't tell us if it's 'diseased', we will measure it and plot its growth rate.
Coming out of the hospital in town I met a lady whose face I vaguely recognised, she knew who I was as I had visited her in the Marsden in 2014, she was having an operation and although I was on a different floor, I had heard of another Jersey patient and thought Id pop in and say hello.
She had just started another round of chemo, her third I think, and its the taxol, the stuff that makes your hair fall out, we talked briefly about that, she said "my hair or my life?" its a no brainer really.
I left her and felt angry, not angry with her of course, angry with this disease, and this was compounded by the fact that yet another lovely, lovely young (41) lady and mum to two small children passed away in Hospice last week.
She too attended the Cancer Support group and we had shared stuff, and had a few laughs and tears and hugs on the way. My heart goes out to her husband (who I've played badminton with) and their children, coming up to Mothering Sunday it is unbelievably sad.
I really want to type I HATE THIS DISEASE, and end the blog post ... but I was given some lovely cards this week, and I want to share them with you instead.
Sometimes life is hard
crazy, messy, mixed-up.
and there you are,
in the middle of it all,
just doing your thing....
being STRONG and BRAVE
and BEAUTIFUL
like its no big deal.
But it is a big deal-
while you wonder sometimes
if you're doing ok,
the rest of us are just
watching you
in wonder.
Enjoy Yourself
What I like best in the whole world
is me and Piglet going to see You,
and You saying "what about a little something?"
and Me saying, "Well I shouldn't mind a little
something, should you Piglet," and it being a hummy
sort of day outside, and birds singing.
I had high hopes that I wasnt going to be a statistic, that I could be in those few percent that BEAT this disease, despite being a late stage 3.
The recurrence some 18 months later was therefore a massive blow, and I quickly realised that I was in for the long haul. Another big operation, not entirely successful and with complications, followed with more chemo.
Last year radiotherapy for five weeks, and so far this has worked extremely well, but such is the nature of this beast and its ability to move onto other areas of the body, it seems to have travelled up to my neck.
We do not know anything for sure.
I had a blood test Thursday, and I am due to see KG on Tuesday, I also have an appointment next Friday 24th March for an ultrasound ( on my neck) . Not as invasive as a CT scan, and whilst it won't tell us if it's 'diseased', we will measure it and plot its growth rate.
Coming out of the hospital in town I met a lady whose face I vaguely recognised, she knew who I was as I had visited her in the Marsden in 2014, she was having an operation and although I was on a different floor, I had heard of another Jersey patient and thought Id pop in and say hello.
She had just started another round of chemo, her third I think, and its the taxol, the stuff that makes your hair fall out, we talked briefly about that, she said "my hair or my life?" its a no brainer really.
I left her and felt angry, not angry with her of course, angry with this disease, and this was compounded by the fact that yet another lovely, lovely young (41) lady and mum to two small children passed away in Hospice last week.
She too attended the Cancer Support group and we had shared stuff, and had a few laughs and tears and hugs on the way. My heart goes out to her husband (who I've played badminton with) and their children, coming up to Mothering Sunday it is unbelievably sad.
I really want to type I HATE THIS DISEASE, and end the blog post ... but I was given some lovely cards this week, and I want to share them with you instead.
Sometimes life is hard
crazy, messy, mixed-up.
and there you are,
in the middle of it all,
just doing your thing....
being STRONG and BRAVE
and BEAUTIFUL
like its no big deal.
But it is a big deal-
while you wonder sometimes
if you're doing ok,
the rest of us are just
watching you
in wonder.
Enjoy Yourself
What I like best in the whole world
is me and Piglet going to see You,
and You saying "what about a little something?"
and Me saying, "Well I shouldn't mind a little
something, should you Piglet," and it being a hummy
sort of day outside, and birds singing.
Tuesday, 7 March 2017
Inspired!
AGE IS JUST A NUMBER
What a 97 year old record breaker can teach us about growing older
By Charles Eugster
I've just been reading about this guy, now he really is inspiring! Think I'll have to buy his book. Look him up!
I did a yoga class this morning, It didn't go well, actually physically it's about the same as it always is, I can manage about half of the 'moves' , and at least I try hard. However this time around I could not switch off my brain, (jokes aside about not having one thank you) .
Instead of that lovely calm feeling and being "in the zone", I was racing about the Planet Of Doom. The longer the class went on the more time I spent playing out various scenarios, that ended very badly, and the crosser I got.
Annoyed with myself for getting in that state in the first place, but equally annoyed with the cancer for robbing me of what should have been "time off" from this disease.
I'm not going to lie, this has been a fairly tough week, coming to terms with all this new "no treatment" stance, not, you understand that I am rushing towards crippling chemo, or rotten radiotherapy, but its the fact that a) I can't have it anyway as my immune system is so low and b) how many tumours are meanwhile popping up unabated?
He's quite right though , Dr NB, why have treatment needlessly, I shall just become very ill and theres a strong possibility it wont work anyway.
At the moment if you wanted to look at the quality of my life (physically anyway ) I am 100%, and the Cancer (lets call it CD, chronic disease, ) is 0%. When that balance starts to alter and the CD is spoiling that quality, then it's time to act.
When ( and I really want to type IF, as that's far more positive) that will be no one knows, it maybe six months, it maybe six years .
I really don't want to waste my days churning over the same old depressing black and white film that plays in a continuing loop , and whilst the days are full of things to do and people to see and laughs to be had, which does help, I don't want to live my life at 100 miles an hour either ( although that's what i usually do, I'd also like to be able to stop and smell the coffee)
I think thats where I need to get to, where i can be crazy busy sometimes, but also quieter and comfortable without being fretful.
Ending with quote ,
Don't ruin a good today by thinking about a bad yesterday.
LET IT GO
Thursday, 2 March 2017
Alton Towers?
I've never been, to Alton towers that is, and I'm not entirely sure I want to go either. When I was first diagnosed lots of people said you feel like you're on a bit of a roller coaster. Its a pretty accurate description, the highs are high and the lows end up very low.
You'll be pleased to hear that despite lots of talking and discussion about treatments and prognosis, I managed NOT to cry, I think thats pretty spectacular! After all this was the first time of meeting this lovely doctor at the hospital this afternoon, and I didn't want him to think I was some kind of lily livered pathetic old woman. Oh, no I was a "Gladiator" albeit one who talked a lot as I was quite anxious, and in stressful situations I tend to talk faster and gabble ( more than normal), he said I kept answering my own questions and at one point told me to "shut up"!!
As you have gathered I liked him straight away, and he has worked with DR H ( he has now retired...sadly. More of him later). In fact we ended up talking badminton for the first five minutes, nothing to do with Cancer! He has also done a lot of work with the PARP inhibitors I was talking about before, so he hasn't entirely ruled them out for the future.
He ran through my history, and asked me how I was feeling, all the usual stuff, and then he got serious, and said he would talk dispassionately and try not to be brutal. At this point I really thought that I was in for some very bad news... I felt so sorry for him, he was such a nice guy and i felt a real connection, and its so hard giving someone news that they really don't want to hear.
So, now for the facts:
I have a chronic disease.
I will never be cured.
I'm sorry if that's really shocked some people, but it's nothing that I didnt know already. Still not good to hear it said out loud, but there we go.
We studied the CT scan and looked at the swollen lymphnode in the base of my neck, it's about one and a half cm (think normal nodes are about a centimetre). When he examined me, he couldnt feel anything, but that's neither here nor there.
We talked about Chemo, and whilst that's more than likely in the future, he said that he really wouldn't want to go down that route now. Many reasons, partly because I am so chemo sensitive (due mostly to carrying the BRCA2 gene. ) I would probably end up very ill again, and as my bone marrow is still so supressed I would have no immune system and therefore open to infection and I'm afraid you can become neutropenic and die... lets not go there.
Neutropenic sepsis is a potentially fatal complication of anticancer treatment (particularly chemotherapy). Mortality rates ranging between 2% and 21% have been reported in adults.
You'll be pleased to hear that despite lots of talking and discussion about treatments and prognosis, I managed NOT to cry, I think thats pretty spectacular! After all this was the first time of meeting this lovely doctor at the hospital this afternoon, and I didn't want him to think I was some kind of lily livered pathetic old woman. Oh, no I was a "Gladiator" albeit one who talked a lot as I was quite anxious, and in stressful situations I tend to talk faster and gabble ( more than normal), he said I kept answering my own questions and at one point told me to "shut up"!!
As you have gathered I liked him straight away, and he has worked with DR H ( he has now retired...sadly. More of him later). In fact we ended up talking badminton for the first five minutes, nothing to do with Cancer! He has also done a lot of work with the PARP inhibitors I was talking about before, so he hasn't entirely ruled them out for the future.
He ran through my history, and asked me how I was feeling, all the usual stuff, and then he got serious, and said he would talk dispassionately and try not to be brutal. At this point I really thought that I was in for some very bad news... I felt so sorry for him, he was such a nice guy and i felt a real connection, and its so hard giving someone news that they really don't want to hear.
So, now for the facts:
I have a chronic disease.
I will never be cured.
I'm sorry if that's really shocked some people, but it's nothing that I didnt know already. Still not good to hear it said out loud, but there we go.
We studied the CT scan and looked at the swollen lymphnode in the base of my neck, it's about one and a half cm (think normal nodes are about a centimetre). When he examined me, he couldnt feel anything, but that's neither here nor there.
We talked about Chemo, and whilst that's more than likely in the future, he said that he really wouldn't want to go down that route now. Many reasons, partly because I am so chemo sensitive (due mostly to carrying the BRCA2 gene. ) I would probably end up very ill again, and as my bone marrow is still so supressed I would have no immune system and therefore open to infection and I'm afraid you can become neutropenic and die... lets not go there.
Neutropenic sepsis is a potentially fatal complication of anticancer treatment (particularly chemotherapy). Mortality rates ranging between 2% and 21% have been reported in adults.
Systemic therapies to treat cancer can suppress the ability of bone marrow to respond to infection. This is particularly the case with systemic chemotherapy, although radiotherapy can also cause such suppression.
We are not ruling out radiotherapy, apparently it would be 'easy peasy' in that area of the body, although it is close to my windpipe ( maybe that would stop me talking?). However a little crazy to go ahead with that at this present time when we don't know if there are any other smaller tumours elsewhere.
Of course, this node may not even be a tumour, so far all we have is a slightly swollen node, but the rising blood counts appear to indicate something's not quite right somewhere.
I hope I'm making a bit of sense, its all supposition, but everyone needs a plan of action, me more than most. Although Steve did say out of all my favorite games - it's the one I 'love' most, It's called "Wait and See".
I am asymptomatic (showing no sign of infection), which is obviously good, and i currently am enjoying a good quality of life. Yes my CA 125 is going up, but at the moment it is still low.
It would be mad to give me Chemo, to make me very ill and actually not wipe out the cancerous cells anyway. As Dr B said, we have to find the balance of the quality of life and the cancer- and as such the quality is winning by far, so until the disease starts to take over again, lets just monitor.
I dont really have a choice.
Having an ultra scan in two months, this is just a non invasive way to measure the tumour in the neck and also a blood test, again just to keep a check on the CA125.
I'm not giving up, far from it, I have to keep myself as fit and as healthy as I can, which I intend to do. I'm apologising in advance if you ask how I '"really am" and I cut you short- unless I've got a stinky cold or a sports injury, I'll probably say FINE, thank you and change the subject!
Totally changing the subject, if you are not on FB you'll have missed the 95 photos that I uploaded- just as well! I had such an amazing time in the UK last weekend, really good to spend time with family and friends, some whom I haven't seen in years. Cousins included!
Thank you everyone for being so kind (and rude) and just normal (and abnormal), and I'm already looking ahead to the end of May when I see lots of you again at our next meet up.
Back to Dr Hima....
Island Friends Together
Another Sri Lankan evening, set at St Georges school on March 11th -7:30-8pm. bring your own wine/beer etc. Tickets £25
Tel 07797717680 or
07829818443
(Advert in tonights JEP)
Back to Dr Hima....
Island Friends Together
Another Sri Lankan evening, set at St Georges school on March 11th -7:30-8pm. bring your own wine/beer etc. Tickets £25
Tel 07797717680 or
07829818443
(Advert in tonights JEP)
Lastly my lovely yoga teacher gave me a little scroll -
“NEVER GIVE UP
― Dalai Lama XIV
“NEVER GIVE UP
No matter what is going on
Never give up
Develop the heart
Too much energy in your country
Is spent developing the mind
Instead of the heart
Be compassionate
Not just to your friends
But to everyone
Be compassionate
Work for peace
In your heart and in the world
Work for peace
And I say again
Never give up
No matter what is going on around you
Never give up”
― Dalai Lama XIV
He gives up an hour a week to take a class at Macmillan ,and he wondered why I was looking a bit down last week, so he thought that may help, bless him.
Still no pictures .... and its taken me two hours to write this post, so totally brain and finger dead now!!... KBO x
Still no pictures .... and its taken me two hours to write this post, so totally brain and finger dead now!!... KBO x
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