Tuesday 27th May

Short Blog Post

Had a lovely weekend, nearly forgot that I had Cancer a few times......a real bonus. Thankfully I am able to sleep, even if I have to will myself NOT to think about it, otherwise I end up overthinking everything.

Anyway, short blog as not long back from netball training, and it's really time for bed....had an early start taking hubby to airport for 7:30am, followed by sand dunes dog walk!

Took a call from the Marsden this afternoon, they have managed to book me in for a scan next Tuesday morning June 3rd, and possibly able to see the consultant later in the day. Tried to book flights by can't as they need a letter from hospital as proof....so I call the receptionist at the Marsden and hope she can fax something through tomorrow, flights on hold.... 

It doesn't sound to me like have scan, have op, sounds more like have scan, wait week, we discuss scan, wait again, we do op..... or is that just me being pessimistic!!

Thought this pic of me by St Pauls Cathedral was rather nice...

Thursday 22nd May

Compost, Cancer and Courses!

You know when you've lost something, and you know you've seen it recently but can't remember exactly where, and you just keep on searching in the same places,hoping it will just pop up? Well i've been like that this last week, struggling to find my lost item, and if you do get to the end of this blog post you'll see I found it....

Compost........that describes my sister's whole weeks holiday really, she was horrified with the state of my bins....( I know, I know we are a strange family). She likened the various degrees of composting material in my five bins, akin to baking cakes.....apparently I just keep adding bits to various bins willy nilly, without ever really emptying them. She said it was like baking cakes, but nobody was eating them, but I keep on baking...... She does have a point, maybe it was my way of playing the innocent naive gardener? The good news for me is she forked out and emptied all the bins, admittedly both Becky and I had to do the spreading, but it has provided excellent 'mulch' for the vegetable borders.

Don't go feeling sorry for her, she LOVED doing it, and it's good practice for her with her new career as a Gardener, but I did warn her not to put her business card in telephone boxes, she's attracting the wrong sort of 'clients'....

Monday I was on a course at the Isis Centre in St Lawrence called Living Well With The Impact of Cancer. It was an all day course that covered many different topics, and was run by two ladies from the Penny Brohn Cancer care unit in Bristol. Macmillan had organised them to come over to the Island for a few days. There were about twelve of us, and we talked about everything from relaxation to financial issues, as well as spirituality and healthy eating. There was definitely a strong feeling of unity between the group right from the start, and as with any emotive subject a few tears.

I do feel as if I came away from the course armed with a few more coping strategies, although I was shattered by 5pm, an excellent fitness session at St Mary's with the twins was just what i needed!


Tuesday was my meeting at the hospital, of which you have had the details in previous blog, and as yet I have had no date for my PET scan.

What is Positron Emission Tomography – Computed Tomography (PET/CT) Scanning?

Positron emission tomography, also called PET imaging or a PET scan, is a type of nuclear medicine imaging.

Nuclear medicine is a branch of medical imaging that uses small amounts of radioactive material to diagnose and determine the severity of or treat a variety of diseases, including many types of cancers, heart disease, gastrointestinal, endocrine, neurological disorders and other abnormalities within the body. Because nuclear medicine procedures are able to pinpoint molecular activity within the body, they offer the potential to identify disease in its earliest stages as well as a patient’s immediate response to therapeutic interventions.

Nuclear medicine imaging procedures are noninvasive and, with the exception of intravenous injections, are usually painless medical tests that help physicians diagnose and evaluate medical conditions. These imaging scans use radioactive materials called radiopharmaceuticals or radiotracers.

Depending on the type of nuclear medicine exam, the radiotracer is either injected into the body, swallowed or inhaled as a gas and eventually accumulates in the organ or area of the body being examined. Radioactive emissions from the radiotracer are detected by a special camera or imaging device that produces pictures and provides molecular information.

View larger with caption

Sample image obtained using a combination of PET and CT imaging technology.

In many centers, nuclear medicine images can be superimposed with computed tomography (CT) ormagnetic resonance imaging (MRI) to produce special views, a practice known as image fusion or co-registration. These views allow the information from two different exams to be correlated and interpreted on one image, leading to more precise information and accurate diagnoses.

A PET scan measures important body functions, such as blood flow, oxygen use, and sugar (glucose)metabolism, to help doctors evaluate how well organs and tissues are functioning.

Thought you might be interested in a little background info on the scan, just what i need a bit of radioactivity..... Never mind Superman, I'll be "Supergirl!"

It's funny isn't it, when you sit there feeling a bit sorry for yourself, thinking about life and how its not fair, and why me, as well as a whole other host of questions, and then I read this article in the paper, and it totally brings me up short.

It was written by a lady called kate Gross http://kateelizabethgross.wordpress.com/, she is 35 and is married with twin boys, and she has terminal colon cancer... I will try and find a link to her article as there are quite a few paragraphs that she has touched upon that I can relate to, although my heart goes out to her, and I can only be encouraged by her approach to life.
My current problem is how to answer well meaning folk when they ask how I am, tricky, do I say as Daniel suggested replying "not too bad" often met with a quizzical look. Do I say aftter a big inhale of breath, 'well......actually" or do I just fib a bit and say 'fine' because thats really what people want to hear, and then I dont need to go into lengthy discussions about forthcoming treatments.

Kate Gross has a spiral plate, made up by a close friend I think it is pretty good, she explains it in detail, but I'll just show it here...

Finally, the very long day yesterday in London, out on the 7:35am flight and back in at 8:45pm, Jack and Becky and I flew to London City, I highly recommend it as an airport, very convenient, although the return flight had a lot of turbulence, can't be helped in a small plane.
We did see the consultant at the hospital for about 20minutes, and it does mean that we are now in the system, but need to go back to Southampton and get more genetics done... hey ho.

The thing I lost?

No, not Dan,(he just wanted in) it was my 'brave face'............ ;-)

Tuesday 20th May

I've had enough of barbed wire on the blog, and tears and rubbish news, and sadness, I'm moving on.....It's really exhausting and emotionally draining crying and being miserable, although I think being given the past week or so, highly understandable.

It's late, I've got much to say but as my two finger typing is slow, and three of us are going to London on the red -eye tomorrow for Becky's hospital visit, I'll keep it brief and fully update later on this week.

I went to see NM at the hospital today, thankfully Jack was able to accompany me, and was very useful with tissues ready, but also a firm stare that seemed to say "don't you dare cry!"

The result of their discussion with the Marsden team was as follows;-

1. Get her over here for a PET scan ( and as Becky said, "does that mean you can take Jessie in with you?") Er, No, but I wish i could....
2. We will take out that enlarged lymph node that could well be causing the rise in the blood markers and potentially going bad.
3. The scan may show up ( as it is very detailed) possible other active Cancer cells, if this is the case I may need follow up Chemotherapy.

I have lots of questions on all of the above, and will process them all in due time and get some answers. In answer to queries I've had already.....
No, I don't know when this will happen, but they reckon days not weeks, hopefully the operation will be a laparoscopy, not another huge incision, but the scan needs to be done first.

As a postscript, NM did  say that I MUST carry on with the sport as it is VERY important, I cant emphasise that enough.......... he did .......really, Ok well not the last bit, but he did say carry on, and that IS the truth.

The netball training was fabulous tonight, two hours of training and playing, hard graft and just what the doctor ordered.....!!!

In the words of Winston Churchill ..........KBO !

Saturday 17th May

Thanks to the 100 or so folk that have checked out the blog page, I particularly appreciate the kind words from those of you who have left comments.

I feel like the funfair has come to town, except without the 'fun'.... and my roller coaster carriage is just cranking up that steep uphill slope, about to tumble into a deep dive leaving most of internal organs at the top.

This has been compounded by my sister leaving me today..... (guilt trip) as she is the older sibling she is the one who is supposed to be strong and supportive and not cry...... so, as my son would say "that was an epic fail on her behalf".


I'm wearing my "Jersey Live" hat, my sister is wearing Becky's cap......

I shall not go into details on this blog about all the things we got up to during the week, but its fair to say that we had a really good time, lots of talking and laughing, and I must thank my long suffering brother -in-law for putting up with us...

They went out on the RIB this morning with Jersey Seafaris along the north coast...

Now to the results of the CT scan, KG from hospital kindly phoned me at 8:15 pm after she got in from work, she apologised for being held up, and tried to explain things a little clearer, enough for even a simpleton like me could understand.

 She feels the Marsden may say that there is such minimal change in the scan other than the enlarged lymph node (increased from 11mm to 14mm) and, without me showing any other signs of illness, it will be enough to monitor the situation and ask for repeat blood tests and Ct scan in two months time. 

However they may say that there is a chance of Small Volume Disease, and there are two schools of thought on this, one is to once again leave it, as it maybe so insignificant the Chemo wont touch it, or they may say actually we think it wise that she does have Chemo, and it would hopefully 'mop it all up'.

In which case i could start chemo next week, but thats just jumping the gun.... I really dont fancy chemo, and I really dont want to leave it either, so I'm stuck between a rock and a hard place....

KG said the team at the Marsden and the team over here are excellent, and the guys reading the scans will pick up every little change/shadow whatever, and I have every confidence in their medical ability. 

The bottom line is I DONT WANT CANCER ANY MORE......

Thursday 15th May

Quick update...... I was lucky to have been offered a slot for a CT scan last Tuesday, which i took, and they ( the scanning team) were very kind and made it as comfortable and as painless as they could. I'm not too worried about the actual Scan its the results.....

I tried to get to see KG at the hospital today, but she had an emergency to deal with, and after waiting over an hour, it was suggested we try and rebook another time, we are certainly not an emergency case.

Ive not heard anything this evening, but expect to get a call tomorrow, as and when she can fit us in. I did bump in Dr H at the hospital, who told me not to worry !!!

My sister/bro-in-law and I are all singing tomorrow afternoon at St Brelades Church with Rising Voices choir, one of our ladies sadly passed away a few weeks ago, and her husband asked if we would like to sing at the Thanksgiving service, that will be emotional.....It has been lovely to sing with my sister who can actually sing ( and read music)!! Shame she cant be here and help me out every week, but then I'm sure she'd start getting bossy........;-) :-)

Monday 12th May

My thanks to Dan for putting together an amusing blog, and even cheering me up from the trembling, pathetic individual I had become upon hearing the blood test results last week. Indeed thank you to all my boys who stopped me from curling into a ball and sobbing, and instead talked sensibly about taking things as and when they happen , and to stop over thinking the whole scenario.

My consultant KG was really torn between calling me or not calling me, nobody wants to hear bad news, so she really was between a rock and a hard place. She was so concerned for me she called last night to see how I was, fortunately I was able to maintain a reasonable conversation without going into chronic melt down. It was decided from the chat we had that there was actually no need now to come into hospital, as the thing I really needed was a CT scan, and she wouldn't have been able to book that by 9am...

However she rang me by 9:30am this morning, to say she had set the wheels in motion, and again by late afternoon to say I had a provisional date , next Monday, but the CT department would call me directly, and sure enough an hour later they did, to say they've managed to squeeze me for 12 noon tomorrow.

 I can't thank her enough for going out of her way to help me, I do believe that she is hoping to set up a meeting with the Marsden hospital to talk about future treatment. Do not for one second be fooled that by me typing this blog i am fine with all this, I am truly devastated, and the thought that the Cancer has come back and so quickly, I can only assume is bad.

At the moment I feel fine, albeit anxious/upset etc, and now couldn't tell you that the dull ache I have in my stomach is anything to be worried about, or is it just a knot of nerves....

Acceptance, that is the word of the week, I have to accept this vile disease and deal with it, I knew the odds were never really in my favour, but it really is no good stressing about something I have absolutely no control over. In the words of my great friend TH "Worry does not influence outcome".

Thursday 8th May

I write this post lying on my back on a comfy sofa with a stomach full of pizza, watching tv, and listening to the dog snoring and farting away in her bed after a wet and windy walk. If you haven't already guessed, by the poor grammar, and change of writing style, this is not Jill but her favourite son (no.3). Mum hardly ever has the chance to sit down on the sofa, let alone lay down and relax on her back whilst watching a bbc documentary. She also would definitely not have eaten an unhealthy pizza for dinner; with extra cheese and chicken, may I add. Anyway, unfortunately we all have to put up with the dogs snoring and smelly farts, but that's life. Getting onto topic... like the dogs farts, Mum's test results have left everyone feeling a bit off colour and slightly ill in the stomach. Without going into too much detail, the blood test results were not as good as we would have hoped for....a second increase in the level of the indicators....not huge, but enough to be back having scans and further tests. We'll all be hoping that this hiccup will be sorted easily....we'll have to wait and see. Fortunately, she has a large family and many, many, friends and relatives that have already been supporting her, and will continue to support her through whatever lies ahead. There is no point in thinking of the 'what ifs' for the future but to continue taking it one day, and one step, at a time. The results give Mum a reason to keep on exercising like shes in the Royal Marines and start hitting back those tennis balls twice as hard; so whoever is the opposition on tuesday night, watch out!

Monday 5th May

I'll begin this blog with my trip to hospital for a blood test, and unlike the previous trips without the special 'bag' with my name and request for the test on because "we have a new system". Apparently it all goes on the computer, so when I turned up at the hospital all the information needed would be there.........wouldnt it?

A little bit anxious about this test (not the actual test , just what it implies) I thought i'll get there just after 9am, and I parked the car and walked into the centre. Well, I call it a centre but actually its a small grubby looking waiting room and two corridors complete with plastic chairs squashed close together. 

As I tugged open the heavy side door to enter the corridor I realised with impending doom that it was full..... as was the waiting room, and my spirit was further dampened by the cheerful nurse calling out "number 7 please", as I pulled out the ticket that said 30 on it.

Just one of those things, nobodys fault, just bad timing on my part, so I played with my phone, and read a magazine, carefully avoiding everybodys gaze, nothing worse that knowing you're staring at someone but don't mean to.

I had a brief respite when a friend SQ, dropped in to relay the message that her and another friend were waiting for me as we planned to have a coffee afterwards, ( I was so late it nearly turned into lunch!).

Even that encounter was a bit cloak and dagger, in fact if she'd have had a raincoat and a beret on, she could have played a part in the french Resistance for 'Allo Allo'!!

So, "number 30" was finally called and I duly went into the next room, where I briefly tried to explain about the 'bag absence". A smile, and then "name please", I thought I'd cover all options and give my full name...... a long pause......"Its not under "Jill", ok, another long pause, a few "hmmm" noises. An even longer pause and then a discussion about an appointment card with a bar code on it? No, I just had a card with a date reminder, yet another furious bout of typing, and finally....she asked me "Newman?" I replied , yes my maiden name, but I had actually been married 28 years.

It didn't matter , as long as they could print out a label of some sort to stick on the test tube, I burbled on about the CA125 that  I knew was what was needed to be tested, but just had smiles in response. 

Its fair to say that i stumbled out of the hospital  nearly two hours later very keen to meet my friends for a coffee, but feeling that I was actually in need of something much stronger!!

Normally I would have had the results today, (?) but being a bank holiday , no clinic, so my appointment is for next week, and little does my sister know, but she's over on Saturday for a week and coming with me!!!

At the end of the 8mile walk for Diabetes, Jessie looks a bit sad as she couldnt play on the beach.....