Making Sense of it All.

Our house is like a mini convent garden market , I have bouquets and arrangements of flowers everywhere ( I've almost run out of vases) and fruit, and biscuits and cakes and cards and gifts and meals rolling in, and visitors and more visitors and EVERYTHING.

Thank you!!!


All of this is appreciated, and you lot are being so NICE, stop it, I don't deserve all this attention. Please!

I read somewhere that you shouldn't start a sentence with "So".

Tuesday.

So, having made it through the night in my own bed, without having to decamp to the sofa with endless coughing fits/ toilet trips and wide awake panicking bits.... I literally dragged my dead legs into the shower and got dressed.

Frequent stops for breathing to ease. I lumped downstairs over an hour later. Everything was a huge effort but I was very keen to walk my girls, so the hubby with raised eyebrows and resigned look bowed to my wishes. I need a carer, so we went together .

Did I tell you when the handsome doctor was examining me and asked me if I had any stomach pain, I said "well, it is a bit tender here by my left hip " and Steve pipes up "that's probably when you fell over " . He was right. Didn't score any points with that doc , which is a shame because he was GORGEOUS ! He was also my sons age :-)

Really enjoyed the 'normality' of walking even with the laboured breathing and abysmally slow pace. I can only really do downhill , Bex collected us.

At home I plugged myself into my oxygen again, I have units downstairs and upstairs . I sleep with oxygen plugged in my nose all night, plus a vaporiser spewing out steamy air in regular bursts and a bedroom fan, whirling around constantly like a a robotic blind eye.........It is noisy, and not what you would consider to be the best entertainment of 'bedroom toys'.

Moving swiftly on, I crashed on the sofa with a coffee until Sue came to pick me up for my chemo appointment.

And here the tone of the blog post changes somewhat, I shuffled along the corridor like the old sick lady I've become ( I could hardly have the strength to get the childproof lock off my mouthwash last night- little weedy shrunken arms) . I went straight into to see the doc.

We looked at the X-rays I have had taken over the last three weeks, we talked about them, we talked about blood results and then we talked chemo .

I have only had two rounds of Taxol, and they were made up of 40ml and 60ml, a full dose would be 200ml once every three weeks. I am therefore having ' baby doses' , it is too early to say if the chemo is working yet, it usually takes three to four weeks.

I was told that I am going to die, whatever I decide to do, and it's my choice if I want to carry on with the taxol or just stop it.

A difficult decision, you'll agree .

Fortunately Sue was with me at this conjecture, and she was able to ask questions that I couldn't voice. We then unanimously decided that we had nothing to lose and would continue certainly this week with the chemo. I have nothing to lose. He did say it wouldn't be the chemo that would kill me, but the cancer.

There also probably won't be a change in the obese legs either . Lack of albumin which causes it, is a natural progression of the disease. In March When I was relatively fit and healthy my 'count ' was 42, today it is 27 and it shouldn't fall below 35.

WHAT DOES ALBUMIN DO?

Albumin performs many functions including maintaining the “osmotic pressure” that causes fluid to remain within the blood stream instead of leaking out into the tissues.

WHAT CAUSES ALBUMIN TO BE TOO LOW?

Liver disease, kidney disease, and malnutrition are the major causes of low albumin. A diseased liver produces insufficient albumin. Diseased kidneys sometimes lose large amounts of albumin into the urine faster than the liver can produce it (this is termed nephrotic syndrome). In malnutrition there is not enough protein in the patient’s diet for the liver to make new albumin from.

WHAT IS THE NORMAL LEVEL OF ALBUMIN?

The normal value depends on the laboratory running the test. Most labs consider roughly 3.5 to 5 grams per deciliter to be normal.

Make a bit more sense ? Not exactly good news.

I trundle off to No1 chair for my chemo , aware of the fitter looking three other patients that skip through the ward to get their infusions, mortified that I meekly accept the oxygen tubing up my nose to complete the picture of "the last chance saloon" image.

Lovely nurse Carol comes in from Raynor ward to chat, ( probably having given up her lunch break ) we talk about lots of things, she cheers me up.

She leaves. I ask my my oncology nurse, "who do I call if I spike a temperature or feel unwell this week"? . The doors swing open and the two Hospice 'girls' ( they'll like that mention .... They are in fact much , much older than girls ....) enter. Low and behold it's me they've come to see.

Heavy duty discussion ( at this point , Sue has very kindly offered to massage my feet, feet ? Fat sausages toes) I can't believe she's asked but accept ,that has to be love, even Steve draws the line on that!

I feel a little betwixt and between ... I am receiving palliative care, I am really under the care of Hospice . I have a telephone number I can call 24/7.

The doc mentioned it, my consultant mentioned it, hospice girls talked about it. As my time is limited I should not have to spend it waiting for hours in A and E, then to spend the night/nights on EAU, with cannula, drips and injections , nor should precious family time be wasted in sitting in corridors waiting for clinic appointments, blood tests etc.

As I understand it so far, the hope is that should I become unwell , firstly I call Hospice, someone will come out and assess me, and be able to give me a ' care package ' of sorts. So make me as comfortable as possible , bring down a temperature , offer pain relief , etc. All in my own home.

I can equally go into hospice, but should I need an actual doctor I will need to call my own one out , as they will not have doctors stationed at Hospice full time.

Obviously the hospice facilities are amazing, ( I know I visited my dying friend last year ) she said it was like a very posh hotel with great sea views . Mentally that's still a tough nut to crack.

Am I accepting this lying down ? No I'm not .

Actually I am sort of lying down, I'm in bed and it's 12:45am , writing this post up on my iPad .

Being born with only half a brain cell to my name , making any decisions has been tough of late , compounded by my lack of oxygen ( that's my excuse , I'm sticking to it. ) I have just remembered that I should have taken my highly powerful , make you feel rough, don't go in sunlight antibiotic.

Back into bed and I have successfully managed to wake my husband and daughter. Steve tells me that he has had a dream ..... I listen to him, expecting to hear some profound vision, possibly with angels. (?) well being and and a happy ending.

He is driving some old Lorries around St Peter and one breaks down, another friend of his also called Steve comes to his rescue bringing some spare fuses. My Steve on trying to fit them drops them on the ground and try as he might can't find them, he becomes more and more angry and frustrated, wishing that the other Steve would just give him more fuses. He wakes up.

This story ( and the way way he tells it ) makes me laugh, which in turns cause violent coughing. It's now 1am.

Any ' dream readers out there ??

Back to today ... I finish my chemo ( and fat foot rub), a quick change over of the "care team" in the car park , exit Sue, enter Sarah. She takes me home , via the shop , I need washing powder .

At home I find a real Angel, Baz has cooked us supper, complete meal of lemony chicken , new potatoes and green beans , love her, supper sorted .

My lovely other Angel LT has had to fly out to Australia , where her parents live , as her father is very ill. I send her my love and prayers .

Sarah meanwhile does a Mrs Doubtfire , strips beds, takes ironing, nearly cleaned the toilets(! Standing joke) and re arranged flower displays.

Sister in law and niece arrive with our shopping from the supermarket , niece scabs a free supper, I'm hungry too . This is is good, I haven't had much appetite, not really doing much exercise to warrant one except piling on the fluid.....

Steve gets home late and this evening we go to a Jersey Heritage site where some friends of ours are staying ... We watch the sun go down. It is beautiful .


God, give me grace to accept with serenity
the things that cannot be changed,
Courage to change the things
which should be changed,
and the Wisdom to distinguish
the one from the other.

Living one day at a time,
Enjoying one moment at a time,
Accepting hardship as a pathway to peace,
Taking, as Jesus did,
This sinful world as it is,
Not as I would have it,
Trusting that You will make all things right,
If I surrender to Your will,
So that I may be reasonably happy in this life,
And supremely happy with You forever in the next.

Amen.



Ps I know AH you probably made all those biscuits and energy balls at 2am !Thank you, and the fish pie was delicious . X










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