Metastatic breast cancer

I was seen on 18th May 2017 by the most marvellous Mr Khan and he wasn't phased at all by my 4 piece cheerleading entourage ! 

Home made, quilting 'Cheerleading' gift from Julia xx thank you 

Danny, XDIL, XFIL and DangeRuss were eagerly by my side , however there  was no surprising news from Mr Khan; he confirmed my CT scans showed no concerns and told me that I am to have a CT PET scan that aims to  picks up more detail about what's going on in my body. So I'm awaiting an appointment for this.

Mr Khans honesty and turn of words was refreshing,  he confirmed that because of the location of the infected lymphnode , that  I have 'distant' metastasis and that the cancer is no longer curable but very assuringly treatable.  Mr Khan was keen to explain that with new treatments coming though , that ladies can live for many years with advanced breast cancer , and this is of course my plan ! 

How I'm feeling about this? :  Disoriented 

Because of the  location of the 'cancer party' in my lymphnode it would suggest that the cancer has spread elsewhere and it will be the CT PET scan that could trace where if any, 'micro met' cancer cells might be lurking . I'm told that they do not routinely do this as it is an expensive procedure , however  it seems necessary in my case and I'm  feeling thankful that the NHS is looking out for me!

The biopsy confirmed that there is breast cancer cells in the supracavicular lymphnode and that they are oestrogen receptor positive.  The HER2 results from the biopsy  are still outstanding, and this will influence the treatment  regime that  I will have. Mr Khan and I are hoping that I am positive for the  HER2 protein, as there are some new and excellent 'targeted treatments' available to help blast the pesky cell into remission!

My treatment has also

included a change of hormone therapy ; from Tamoxifen to Letrozole. The Tamoxifen I have been taking since 2014 clearly hasn't worked and gave me some side effects that required treatment for polyps earlier this year . It seems Letrozole is more in keeping with ladies that are post menopausal in any event, and I have high hopes that this will help... I'm summoning the power of positive thinking, so let's have a high five for Letrozole!! 

Systemic therapy' i.e. chemotherapy is also part of the plan as is  radiotherapy. I am now waiting for an appointment with Dr Knighton in oncology to give me more details. Whilst I have completed this kind of treatment before, this is in a whole different league and the start of a life time of treatment for me!

I'm not saying that I'll be in chemo for life but my new reality is that my treatment will never be over, and that I will be relying on treatments to manage this very unsolicited cancer party in my body! 

How I feel about this; it's been a bit of an emotional overload to be honest , but it is what it is and  ' I got this'

Funnily enough, I have just received an invitation from Northampton General Hospital to the opening of their new chemo suite on 6th June 2017, because of the fundraising 'we' did for them through the 'hair dares' adventures of 2014. So, with some sweet irony, It seems I will get to directly experience the new and improved chemo suite ! 

Surgery to remove the lymphnode was put forward by locum consultant Mr Milanowski , however Mr Khan explained that the research available would suggest this would have  no particular benefit and not at all in keeping with practice.  To have 2 conflicting thoughts about this, has probably not been the most helpful to me, however I feel in safe hands with Mr Khan's assessment and some pre appointment googling has made me feel satisfied with surgery not being part of the plan.  

A vital component of my 'treatment' plan is of course my support network. There's research that suggests that social isolation may lead to poor survival rates in breast cancer patients. I know I'm already blessed with an army of cheerleaders, and know I have to be open to the support that sometimes I struggle to accept . 

So, Kath, the breast care nurse has been tasked to coordinate and chase appointments for me and it seems that I will be referred to the metastatic breast care nurse , a new service offered by NGH!

And now for the good news !!

I get to go to my friends wedding in Barbados next week !! Yay! 

When I asked Mr Khan about this, he told me that the cancer in itself would not be an issue , but with a cancer diagnosis I am a high risk of blood clots during flight. It really did sound as if he was advising against it, though said there were steps I could take to reduce this. I finally  got what I needed to make a decision about the holiday, when I acknowledged his duty to inform me of the risks, and asked what his advice would be if his wife was in the same situation . So it seems the benefits out weigh the risks and I'm off to Barbados . Happy days !

Cheerleaders!

So, you now know what I know on a medical front. On an emotional level, I can't quite find the right words to translate what's going on in my head at the moment, but know this ; Every fibre in my body is braced  to kick some cancer  'ass' .

The 'elephant in my head'

I'm pleased to report that my  F.U Cancer Cheerleading Squad is growing nicely and I have been overwhelmed by the encouraging  'Pom Pom shakes' so far !! Thank you !

A cheerleading message from Spain, thank you Elizabeth!

I went for the CT scan on Tuesday 9th May with chief cheerleader, Becky, my DIL. This seemed all pretty routine and the scan itself was over and done with no time. There was only three attempts at inserting a cannula in my arm/hand for the procedure and luckily I quite liked the taste of the aniseed flavoured  concoction I had to drink over an hour period before hand.

I wasn't supposed to get the results of the CT scan until 18th May ,however when I went for the guided biopsy procedure on 12th May with Dr Moss, I took the opportunity to enquire about the results when he told me he had reviewed them . Dr Moss was absolutely 'amazing' with me and told me that the CT scan indicated no concerns relating to my internal organs .

What a relief !!!!! My friend Mary who was on cheerleading duties with me that day couldn't contain her 'relief' and was 'whooping' all the way back home!

I do reserve some caution though, because my original cancer had been occult and was undetected via CT, MRI or mammogram, and so I have questions prepared about this for my appointment with consultant, Mr Khan on 18th May , where I expect to receive the results officially.

Dr Moss' charm and professionalism meant that the guided biopsy procedure went  without any drama. He used ultrasound to locate the lump I had found  in the crease of my right collar bone, aka supraclavicular lymphnode. The area was numbed with a couple on injections and two samples were taken. It was only the 'trigger sound' each time that caused my toes to curl!

Dr Moss told me that he saw a few lymphnodes during the ultrasound and that the biggest one, the one that I had noticed was 8mm in size.  Apparently this is within normal parameters and would not necessarily have raised concern had it not been for my history. In 2013, I had been told the same and we all know what that led to!

The black blob on the screen is the pesky lymphnode! 

So that's all the tests for now and I am now keen to see Mr Khan with my list of questions.

I also aim to find out whether I can go to the wedding of my dear friends , Ruth and Trevor in Barbados. I'm  due to fly out on 24th May , however all the holiday preparations are on hold until 18th May. Fingers crossed  x 

Love you guys x 

How I feel today: Keen to get the 'show on the road'. Lots of wonderful and exciting things happening this year! 

I've been existing in a pretty surreal world since I was re diagnosed. I remain at work and had been aiming to maintain a business as usual approach  in my professional life , but last week I admitted defeat when the 'elephant in my head' was just not letting me concentrate enough to hold it all together whilst balancing work, the emotional fall out and attending hospital appointments.

I clearly underestimated the impact the news would have on me and I have since been focussing on winding up my work and have had to rely on my colleagues to cover some of my responsibilities this week. Luckily I have a planned period of holiday leave next week which will give me a chance to catch my breath and make further plans about work and life when I know what my  treatment plan is!

I'll be catching you up shortly on events that led to the re diagnosis and will be sure to update you following my appointment. 

Cheerleaders

There's certainly  no 'sugar coating' in me for today's update; the 'pesky cell' is back. 

How I feel today; Angry and very determined! 

I've spent the last couple of days letting my nearest and dearest know and having found myself repeating the story and then forgetting what details I've shared and with who, I have decided to use my blog again to keep updated, those minded to follow my story. 

I'll recap on events and provide more details in future posts, but for now I am due to have a  CT scan on 9th May and a guided biopsy procedure on 22th May and the results will pave the way for the next chapter of my rather eventful story. 

I sure have been feeling 'the love' from those that have been learning of my news. People have been super keen to know how they may help and so what I have asked for and need at the moment  my lovely friends are some 'cheerleaders' , ready to furnish me with  encouragement as I prepare to pick a determined fight with this rather persistent pesky cell.