May 3rd 2018

Firstly let me start this post by thanking everyone who had wished the girls luck in their recent Marathon run, and very kindly donated to their causes. Money is still coming in and I think the total for Baz stands at £3,584.75 and for Steph £4,204.17. Amazing that they raised that amount, and even more incredible is that they not only ran the marathon in sizzlingly heat they FINISHED the race.

Well done girls total respect.

I have been filling in a form this week to apply to 'model' clothes at an Ovacome tea party in London next March. I probably wont get past the first lot of applicants, and it maybe a little ambitious for me health wise, but I thought "nothing ventured, nothing gained".

What it has made me do is go through my whole sorry cancer saga, and I did most of the form filling in whilst sitting in hospital supporting Bex through her recent endoscopy she had this week. Suffice to say that all it did was made me realise how much treatment I have had, and how it has ruled my life to such a degree over the last six years.

Bex is doing ok, she has been having her own troubles to deal with, and between us we have our own demons to face, but thankfully Bex is taking more 'ownership' of her life, and is less anxious than she used to be, all in all its mostly positive, but not without a fair amount of hard work on both sides.

I had bloods taken this week, and had the results today, it seems as though they are all picking up from the chemo knock back and heading in the right direction, I didn't ask about the CA 125, I expect its also on the increase, but I can't do much about that, and "worry will not influence outcome", so best ignore that for couple of weeks before the next test.

Its not been quite four weddings and a funeral, but we have had plenty of birthdays, one wedding, a christening coming up this weekend, and sadly a few funerals.

Last Saturday we took Papa to F.Foots to see if his warranty on his radiogram was still valid after seventy odd  years......

 Apparently it still works, but I've never heard it!! A family Heirloom...


We celebrated the fact that St Lawrence Netball club has been running for fifty years, obviously we needed a big party!!

Our Umpire.... just retired after 20 years!

 A surprise visitor from the UK, we loved seeing you Rosie!

 Not to be outdone Super Gill ( dont ask) has to make a speech too.....

That pretty much sums up the night!!

Please dont feel you have to read any further, but....

Thought you may like to see an extract from the Ovacome form.....

1.     Please tell us as much as you can about your experience of ovarian cancer including your diagnosis, treatment and timings.

I first visited the doctor in December 2011, I had been experiencing a change in my bowel habits and had a bloated stomach. An ultra scan on January 31st 2012 was quickly followed by a consultant follow up a week later. I was told the news that no one wants to hear. I had a 13cm large tumour on my left ovary. Although at this time they couldn't definitely say that it was cancer it was implied. I just wanted to run away. An operation at the Marsden in March involved 'full debaulking' etc and I was given results of being a stage 3c.  It was at this time I began writing a blog, jillyluce@blogspot.com entitled "One day at a time " . I found it was the best way to get news updates to my friends and family whilst writing it down helped me process and deal with what was happening in my topsy turvy world. I began 6 cycles of carb platinum and taxol. In theory I should have been finished by August, but after cycle 4 ( dose every three weeks) , my blood cells refused to pick up. This did not correlate with how I was feeling. I often breezed into oncology after playing tennis ( fortunately I could have my chemo in Jersey) to be told that my blood results showed me bordering neutropenic. Finally after stopping the taxol bit and drip feeding the carbo through the Autumn I finished chemo in December. 2013 was a good year, hair grew back, energy returned etc. January 2014 saw the CA 125 starting to rise again, as the year progressed it continued its upward trend, and a scan showed more tumours had appeared in my abdomen on my paraaortic vein quite close to my left kidney. More discussions followed between the Marsden and Jersey before it was decided that it would be worth attempting a second operation to remove them . Two consultants were assigned the task and I was booked in to the Marsden August 2014. Flights and accommodation sorted, had pre checks and at the eleventh hour it was discovered that my white cells and neutrophils were far too low to recover from any surgery! Back in jersey and more waiting, until finally had the operation in September . It was partially successful. I didn't bounce back from this operation as I had previously , and to add to my misery I was full of lymphatic fluid. It was so bad that upon arrival in Jersey I ended up in Hospital . I couldn't eat, sleep or even walk very well- at one point they were going to operate as they thought I had a bowel obstruction. It turned out I was so chock a block full of ascites, that all my internal organs were squashed! My lovely consultant finally stuck a drain in my swollen abdomen and relief was sweet, I could actually sit down properly! I did however end up in an air ambulance heading back to the Marsden for observation for a week.   On top of this the oncology department were desperate to start chemo , which finally started 6 weeks post op. Despite my Jersey oncologists reservations it was decided to give me 100% carbo, predictably it took my body weeks to recover ! I limped through the cycles of carbo ( reduced dose, roughly 3/4/5 weeks apart) aided and abetted by injections of GCS-F to boost my white cells. Oh, and a few blood transfusions to boot. Finished treatments finally in May, and got back to walking the springers and  playing all my sports, badminton and tennis were manageable during chemo ( yoga and Pilates very beneficial to recovery from the op) but the higher aerobic ones like Zumba, racquetball and particularly netball were much harder to participate in. I had a huge amount of help from lovely friends who in order for me to enjoy doing the things I love, cooked homemade meals for the family, did my ironing, shopping, housework etc. Bless them all. My Ca125 continued to stay low until January 2016 when once again those numbers were on the incline. A further CT scan showed that the area in my abdomen that had been operated on, was again active. Lots more weeks of discussions and waiting. Radiotherapy was the answer, so scans appointments flights and meetings until September 2016 I began radiation at the Marsden. Accommodation was 7 minutes away from the hospital and Jersey Cancer Relief helped with expenses. Family and friends stayed with me over the five week course, and I made the most of being in the city. We saw shows, ate out, and generally made the most of it. My side effects were minimal and the staff at the hospital were sympathetic , professional and shared my sense of humour! We began the new year in good spirits but a routine blood test in January ( what is it about January's?) showed the marker was still on the increase . It was subsequently discovered I had a large tumour in my neck ! The usual MDT meetings etc resulted in being booked in for further radiotherapy back at the Marsden ! It's fair to say the staff were surprised to see me back so soon ! 4 weeks of treatment , and more credit card spending followed with a trip to Guys hospital in the mix. I was being tested for any genetic mutations, and what do you know, I carry the BRCA2 gene. Siblings informed and of course our four children. Finished radiotherapy in June 2017, and felt OK. November 2017 there was no let up with that inflammation marker, something was amiss. A comprehensive scan showed multiple tumours in my abdomen, chest cavity and groin. Now we had a slight problem. It was discovered during the second round of chemo that I was officially suffering from myelodysplasia (MDS), so having chemo would prove difficult, but it was my only option . December 2017 I had a port fitted and started a baby dose of weekly chemo, cisplatin. Couple of breaks Christmas week and one in January and officially stopped in March as my bone marrow was struggling to produce any half decent blood cells. A transfusion in February helped the Haemoglobin , and did wonders for my energy levels. So here we are in April 2018. My bloods are recovering , but my Ca125 is busy again......