The Elephant is in the room....

Let's not forget the real reason I began this blog five years ago, primarily to give a 'voice' to my feelings and thoughts on a regular basis. To off load all the rubbish and general unjustness that comes with having a cancer diagnosis. Secondly it has been a good way to keep family and a few friends informed on how treatment and tests are progressing.

This has, to date, been an excellent tool, and whilst I do realise that the whole world can read what is written, fortunately it's only the close family members that 'kindly' point out my many grammatical errors. I can deal with that, as long as folks get the general gist of the often muddled, confused content that purports to being part of my brilliant brain.

When times have been bad, I've often written more frequently, and equally when I have been well and enjoying life to the full, the blog has been neglected.

Last week I had the results from a CT scan.... and then a blood test. Not quite the best news I was hoping for, but having chatted to KG and gone through the various options for the future, it wasnt too bleak.


I took a call today from the hospital. This time the MDT meeting  that was held this morning with the Marsden included me and my recent CT scan. The Marsden had compared my PET scan I had had in September with the recent scan, and taking into  consideration the fact that my blood counts were rising looked a lot closer comparing differences.

It seems I have a slightly enlarged lymph node in my neck. Of course nobody can say for sure but it seems to indicate cancer cells.

The double blow following further discussions is there are no clinical trials at the present time for people with the BRCA2 gene, and even if there were I would not be eligible as my white cell count is still suppressed. It has never recovered since the first lot of chemo, and they do not take patients with very low immunity systems as the treatment knocks out the white cells anyway.

This leaves me with Chemotherapy the carboplatin drug, that I have had in 2012 and 2014/15. Although not the taxol side, I barely managed that the first time around and it makes your hair fall out. Having said that I only had 100% carboplatin on the first cycle and then reduced amount for the rest of the treatment (plus blood transfusions) as everything was wiped out.

Next week I am hoping to meet up with the new doctor at Oncology, and have further blood tests and discuss chemo. Also meeting up with CM the haematology doctor at the hospital as in all likelihood I will have to start injections of G-CSF.

Chemotherapy induced neutropenia 

Chemotherapy can cause myelosuppression and unacceptably low levels of white blood cells (neutropenia), making patients susceptible to infections and sepsis. G-CSF stimulates the production of granulocytes, a type of white blood cell. In oncology and hematology, a recombinant form of G-CSF is used with certain cancer patients to accelerate recovery and reduce mortality from neutropenia after chemotherapy, allowing higher-intensity treatment regimens.^[11] It is administered to oncology patients via subcutaneous or intravenous routes.

G-CSF was first trialled as a therapy for neutropenia induced by chemotherapy in 1988. 

Although I am typing this out now, this blog will not be posted until tomorrow (Wednesday) as we have not yet told the children. Luckily I could get hold of Steve straight away, as to say I was upset was an understatement.

Last week I felt a bit flat and overall sad, sad and angry and resigned all in one breath, today I feel a hundred times worse.

Despair that I can't even hope to get on a 'trial', sickened with the thought of having more chemo, and so soon. Above all frightened ... and what did I want to do when i had the news?

Run

Just as well I didn't publish this last night, its not good to end with bad vibes.

You can understand after last weeks chat that this all came as a bit of a shock, and after telling Steve (who is amazingly steadfast and dependable, fortunately for me),  following up this morning by telling the boys, and this evening Becky.

In many ways that was the hard part, and now I have had 24 hours to absorb it all I have no choice but to move forward and do whatever they suggest.

I shall be recieving a letter shortly with more information on what has been decided, and I'm guessing appointments at the hospital will follow.

Until then i shall carry on doing what i always do, walk dogs, play sport and care for my family ( not necessarily in that order but more than likely!!)

“Be not afraid of life. Believe that life is worth living, and your belief will help create the fact.”
– William James

The good, the bad ........and the ugly?

Always best to start with the good news ,and it is GREAT news that the CT scan is clear :-)
No sign of any tumours ( we will just bypass the fact that anything under 10mm doesn't show up) and the node (s) that were being zapped by the radiotherapy have shrunk back to normal size.

In December my CA 125 was 17 - remember anything under 35 is fine, and that had been increasing all of last year. However I took a blood test on Monday and its risen to 29 , still in the "safe" range but still not the best news.

There are many reasons why the CA 125 markers fluctuate, it's an indication of inflammation in the body , not always to do with Cancer cells, but any infection can cause a high reading.

Equally the test is just a marker and not necessarily accurate, however I seem to be fairly sensitive to the test and so far a rise in the CA 125 could very well mean that the cancer cells are active.

It was good to talk my consultant KG, especially as there had been an MDT meeting that morning, and although I wasn't originally on the Marsden list she asked questions about the the next phase of treatment.

There was talk of possible trials that I may be eligible for, particularly as I have the BRCA gene, ones that involve PARP inhibitors in particular Olaparib.

Olaparib is pronounced oh-lap-a-rib. It is also called by its brand name Lynparza. It is a type of biological therapy drug called a PARP-1 inhibitor.

It is a treatment for ovarian cancer. It is for people who have a change in a gene called BRCA.

You may also have it as part of a trial for other cancers.

How olaparib works
PARP is short for Poly (ADP-ribose) polymerase. It is a protein that helps damaged cells to repair themselves. Olaparib stops PARP working.

Cancer cells with a change in the BRCA gene rely on PARP to keep their DNA healthy. So, when olaparib stops PARP from repairing DNA damage, the cancer cells die.

Or it maybe another round of chemotherapy , but not straight away. There is no point in trying to have chemo with microscopic cancer cells, it just won't work, and I'll feel terrible.

So, the plan is to wait... Have another blood test in a month, see what the tests read, and act accordingly.

That old game.

That was the afternoon visit to the hospital, the morning visit was at the breast clinic, seeing another consultant MS. A very nice young man, who talked about the pros and cons of surgery.
Carrying the BRCA.gene means I have a very high risk of getting breast cancer ( I don't do things by halves) , and so I needed to talk to him about the possibility of a full mastectomy, or is it worth the upheaval of another operation ?
I did struggle a bit when one of his first questions was " so, what's your prognosis "?
We decided that at the moment we would leave things be, and just monitor the situation , in his words " I may have bigger fish to fry" .

As always in these sometimes tense, serious situations there often is a comedy element ( or is that just me?) When the 'young' consultant tells you how many 'grams' of breast tissue you have (approximately) , and you're not sure if that's the combined total of both breasts .............too embarrassed to ask...........and even worse it's not even as much as a pack of butter!

He did say politely that it may not be as big an operation as it would with other ladies, but still it's fairly major surgery. Unfortunately it doesn't matter if you have 100g or 1,000g of tissue it only takes one cancer cell.

I now need to do my own research into PARP inhibitors , and I do hope to meet up with the genetics team when they come over to Jersey.

So, the the Big C has once more raised its ugly head, just when I thought I'd get a year off.

Still, there are always others that are worse of than me, and that is true.

In the words of a great philosopher ...

“Sometimes, if you stand on the bottom rail of a bridge and lean over to watch the river slipping slowly away beneath you, you will suddenly know everything there is to be known.”

A A Milne




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Friday 10th February

Results.... Sort of.

Good news in the fact that Becky's 'lump' doesn't appear to be sinister or bad in any way, but... They still don't know what it is, and they are unable to test for neurofibromas ( which she already has in multiples, growing on nerves, and consequently painful when knocked). So, they have sent the sample to Nottingham to be tested, I don't know when we will get results from that, but at least she requires no further treatment, and you never know if they find that it is a neuroma, maybe it will help her to treat the ones she already has, we live in hope.

I have had my CT scan today, results Tuesday afternoon, fortunately think Steve can come with me, scan was ok, just wipes me out, but think that's partly due to worry/adrenaline/pretending it's not a big deal etc .

Drawing a line under that and moving on- Jack has had a week skiing with a friend , a more competent skier than him, and consequently I think he has been challenged daily, black runs seem to have featured quite highly on his agenda so no doubt he'll be pleased to get home in one piece!

Dan has just had an amazing trip on a helicopter to see the whales , apparently the boat trips were all fully booked so they had no choice but to take to the skies! Sadly today I hear that further up the coast over 400 of these beautiful mammals were beaching, and many have died, tragic.
He is back in the island next Thursday I think after his epic journey around New Zealand .

I too have more travel plans, two weeks today I am heading over to the uk again, only this time to celebrate my little brothers 'wedding' party. Him and Janet got married in December ( on a cruise in the Caribbean no less ) and so are having a little shindig with family and friends on the 25th.
It's such a pain to get to East Anglia, so I'm flying to Gatwick and catching various trains, if they're running .. Anyway, because it'll take a day travelling each way I'm staying until Tuesday, try to get as much as a 'family' fix as I can.

“Life is 10% what happens to us and 90% how we react to it.”
– Dennis P. Kimbro









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February 5th 2017

So nearly a week has passed since Becky's operation, and we are moving in the right direction. Still a little sore, but painkillers only about once a day, (still lots of 'resting' phases... Shes good at that ........mind you with the rain/wind we've had today I don't blame her)

The house looks like a cross between a florist and a chocolate shop, lucky girl has had visitors and gifts bestowed upon her all week! That's helped the recovery period enormously- and we both were given a basket of beautiful primulas to share,  kindly sent from St Martins Methodist Church, who continue to pray for me regularly. Steve played the organ there this morning, and by all accounts had a few rather tricky hymns, but he just somehow works it all out, plays loudly, quickly, and with confidence and manages to keep most of the congregation with him!

The repairs to the cottage are coming along, the painter/decorator has been brilliant, and should be finished mid week, the new hob/worktop etc is ordered and should be fitted soon. The carpet fitters are coming Tuesday, luckily only one bedroom carpet, bathroom and the stairs need replacing.

We keep hearing the odd news bulletin from #3 son in New Zealand, he seems to be having a good time, seeing the sights, and not too many hair raising dangerous activities so far, well at least not the ones he is telling us about. #2 son has just departed for a weeks skiing holiday ( very nice too) in France, so we really are down on numbers- but its ok I still get hugs from all the lovely girlfriends!!

This week could be a little difficult mentally, I'm trying not to overthink about it but I have my CT scan on Friday, and will hopefully get the results the following week (14th-valentine's day!) In fact that day I have an appointment at the breast clinic too, so I shall spend most of the day in hospital it seems.

Having the scan is not so bad, the cannula and injection is pretty yuk, but its the wondering and worrying about those results- and on top of that we are expecting to hear Becky's results by Wednesday, so all in I'm doing lots of 'yoga' breathing, thinking happy thoughts and staying positive.