When the shit hits the fan....

....it makes a right mess

It is now 28 September 2018 at 1.04am.  At approximately 1.45pm yesterday, I was told that my cancer has progressed.

Despite being dog tired when I went to bed at 11pm tonight and then deciding to have a sleeping tablet as I was so uncomfortable and also breathing shallowly, I am still bloody awake!

Needed to add in a calming picture of this week to calm down while writing.... Brean Sands

So this is how things panned out yesterday/today and have been a topsy turvy whirlwind...

Most of you will probably know from the last blog/vlog that there was some discussion about what was going on with my liver...mainly because my abdomen was starting to swell, badly.  In fact, I can tell you that I have put on half a stone in less than two weeks, am the heaviest weight I've been in my entire life, look like a pregnant woman without the enlarged boobs and can barely do up any of my clothes.  This means that I am constantly uncomfortable and am having much more difficulty moving about and even breathing etc as all my organs are squished.

I messaged Sue, my nurses, earlier this week to tell her that things seemed to get getting a bit worse and that I was just not tolerating this well... in fact, I've felt that I've just been 'existing' these past few weeks while I've been off treatment, rather than 'living' at all.

In my last appointment with Dr A, when we decided to stop the chemo, he had said that there could possibly be a stablisation of the liver or a progression, but when this stomach stuff started happening the CT scan (which would have been about 7/8 October time) was brought forward.

Anyway, she said she would talk to Dr A and get back to me.  Originally she said that I would be getting an appointment on Friday and that my scan results would be in!!  At this point I was thinking I would at least get 'drained' as well as there had been some speculation about abdomen distension which Cancer Research describes as the following:

"Liver cancer can cause swelling of the tummy (abdomen). This might be because:

• the liver gets bigger from the growing cancer, and causes swelling on the right side of your abdomen
• the cancer (or cirrhosis) increases pressure in the liver causing blood to back up in the vessels (veins). This forces fluid out of the veins into the abdomen (ascites)

The increased pressure in the veins can make them swell so they might be seen under the surface of your abdomen. Ascites can also develop when the liver isn’t making enough blood protein (albumin).

A swollen abdomen might cause discomfort or pain, and a loss of appetite or feeling full quickly. 

A swollen (enlarged) liver can cause pain in your right shoulder. This is because the enlarged liver stimulates nerves that connect to nerves in the shoulder. It is called referred pain."

My friend Helen has been 'drained' before and has spoken about what a relief it was as it immediately felt lots better and I was hoping to be in that position too.

I then got a call from Sue on Wednesday saying that they had managed to get an appointment with Dr A on Thursday at 1.30pm.  Tim and I didn't tell anyone, and let most people think it was still happening on Friday.

So it was with some already deep understanding by both of us that we were going up to the hospital to get bad news.  Sometimes you just know.  I mean, with an expanding stomach, it can't be good right? I've been sat for the past few weeks on no treatment just thinking, 'it's growing, it's growing'....It's been such a difficult time.

We played a couple of crosswords and an Arrow word from one of our trusty puzzle books and were called through by Sue.  There was a 'feeling' in the room.

Dr A asked how I'd been. I said 'fed up', we talked a bit about the trip to A&E and how it started with the shoulder pain (see Cancer Research info above), explained how it had started to spread to my side and then showed him the outline of my stomach and said I wasn't in a great place.  He asked if the steroids were helping (as if the liver is inflamed it should help in reducing it).  I said they hadn't so far, but had only been given the instruction from him, via Sue, the day before to double the dose, so I'm to keep on with that to see if that will help.

Then he said, 'right, to the CT scan results'.  He leaned in a bit and then the words we were expecting.  'There has been progression in your liver and your liver has also enlarged'.  Basically, my liver how grown from 18cm to 23cm and I have new tumours which have developed since the Paclitaxel chemotherapy finished.  

However, what he did say is that there is no fluid showing at all and that all my stomach swelling is because of my liver.  Your liver is held in a sac and it is getting stretched.... oh jeez.  I was at least hoping some sort of draining would mean some sort of relief, but Dr A informed me that he had sat with the radiology team that morning to go through my scan in detail to check everything out (which made me feel better, and that he is totally thorough) to know exactly what we're dealing with.

Oh he also said that my tumour markers (from bloods) were off the charts...

There are no other mets (ie. other cancer lesions) in any other organs, or any in of my bones (where it started originally along with the liver), but if they can't get the liver under control, then we all know it's curtains.  Your body can not live without the liver and its vital function.

Going back onto hormone treatment is not an option as it will not be strong enough to try and control the liver issues, so what now?  

Well, it's straight back onto chemotherapy.....lucky me!  None of that counting bullshit like I did when I was trying to reach my magic number 18, now I just hope, hope, hope that it fucking works and stabilises things and helps to relieve the symptoms.

Needless to say at this point, I had a bit of a cry and it was almost quite comical as neither Dr A, Sue nor Tim had a tissue to hand... I was a trooper and just used my sleeve! ha.

I said that I didn't know if I was going to see Christmas.... Dr A said, this is another chemotherapy and there are still some others if this one doesn't work so he wasn't concerned about that. He said you'd know by my face if I was concerned about it....er, so I'll need to work out that 'face' in future then!!!  But we all know that the more options I try, the more they run out, right?  I know medicines are coming on line all the time, but for those of us on borrowed time, it is unlikely to become a reality.

The caped crusader?

My new chemo is in tablet form and runs on a three week cycle.  It's called Capecitabine (or CAPE for short).  Macmillan explains it all here.

Being a tablet rather than IV drug infusion means no cannulas for a while (small mercies?).  The tablets run over a course of three weeks (like most chemotherapy, the cycle is three weekly).  I have to take two tablets a day for two weeks, then have a week off before having blood tests, seeing my oncologist for a review and, hopefully starting the next cycle.

The CAPE will give me an increased risk of infection as my white blood cells will be significantly lowered (basically knocking out my immune system), so the advice has been to get my flu jab as we are coming up to 'that' season.  Also it is known for giving significant diarrhoea and sore hands and feet. Fun times.

There is possible hair thinning but not loss per se, and given that my hair is just growing back, I'd be grateful if it didn't start thinning again!

The question from Dr A was if I was happy to start the chemotherapy immediately ie. tomorrow.  He's spoken to Sue in advance of the meeting who had said she thought I would be likely to say 'yes' so they had got everything ready. 

I had to have a consent form, I had to have a pre-chemo chat with the chemo sister (Kirsty...what a star) and have bloods done.  So Dr A got all that prepared and asked me to see him in two weeks time to see how things were going.  

We all shook hands then I was taken to be weighed and have my height taken (which they have to before every person starts a new chemo, even if they've only just finished a previous regime) then I went into Sue's office where Kirsty went through the pre-chemo chat.

We all had a good moan about it all....I've got on really well with the chemo nurses on my time at Rowan and feel I can rant and rave as much as I want.

Kirsty took bloods out of my PICC line for the last time as it was agreed with Dr A that it could now come out as I only need bloods every three weeks and won't need it for IV chemo.  As a PICC leaves you with a risk of infection, blood clots or kinking, we all discussed that it made sense for it to come out.   

And that's what it did....within two shakes of a tale which I couldn't even feel, it was out of my arm.  When I'd had my first one removed I really felt it when it was removed as that one was kinked (and as we know it was never really put in properly in the first place)...it was awful, but this one is a breeze and I will be grateful not to have to wear a plastic sheathe over my arm when showering any more and have a bath without worrying about it getting wet!!

Kirsty said I was booked in at 11am tomorrow to come and check on the blood results and pick up the CAPE (which I'm not to touch with my bear hands as they a cytoxic!!) and get some anti-sickness drugs etc etc.  

Sue came back into the room and had a good chat with Tim and I about where we were, how we were feeling and had a hug. She also mentioned it's possible that the symptoms won't be fully relieved by the steroids or the chemo drugs so Sue and her 'symptom management colleague' Gayle are coming to see me next week.  If there has been no improvement I will be gradually taken off the steroids to see what other techniques are available for dealing with a huge liver which is squashing my other organs!

So that in a nutshell is what's been happening in the last 24 hours or so.....  Oh, that and then having to tell our nearest and dearest...always my favourite job post hospital visit!

A sense of relief

When we were home, eating cake out of necessity, finally Tim and I both admitted that, despite the shit news, we are both glad that we have some 'answers' and that also treatment can get started again rather than be stuck in this limbo scenario.  

We actually felt a sense of relief and a weight off our shoulders, so we took the dog for a walk in the last of the evening sun and filled our lungs with fresh air before dining on home made pizza, which despite not being able to eat as much as I want as there is no room for my stomach in my squished organs, was bloody lovely and welcome.

Seaside and Rock Houses

Luckily (for me, not him necessarily) Tim has had this week off on holidays (as you know we were meant to be going to Brussels, but thank goodness we cancelled that as there is no way I could have walked for long or handled travelling so uncomfortably) so we've been able to go to hospital appointments etc without too much faff.  However, we have managed to do a couple of nice things this week, within my limited parameters.

On Tuesaday we went to Brean Sands which was lovely.  The sun was shinging, there was scampi and chips and the dog could run and chase his ball to his hearts content.  We were only there for a couple of hours, but the peace and tranquility was lovely.
 

At Brean

Peaceful

The dog ran around all afternoon

My two faves

Then before our hospital appointment this afternoon we decided to visit Kinver Edge in the morning, again somewhere we'd never been, but Tim's counsellor had suggested it and also meant we got another use out of our National Trust membership.  Despite it being a bit of a struggle me walking up the small slope to the Hill Fort, the views were wonderful.

Kinver Edge

As far as the eye can see

Calming views before the hospital appointment

Branch shade mark on my newly growing hair

Rock Houses (getting the most from the National Trust membership)

Quaint

Where there's a will, there's a way

Oh, and on Monday we went to finalise and sign our wills, then I spent the afternoon writing an expression of wishes regarding various things.  

I'm actually meeting with a funeral director next week as well to get an idea of options available (no hearse for me, that's for sure) and Tim and I have also had the discussion about my cremation and 'leaving drinks' (who likes to call it a wake??)...I already know I'm going to be gutted not to even attend my own party in person!  

I mean, can you imagine having those conversations with the person you love the most when you're 42 years old.  But the more of this stuff we can get sorted now, the 'easier' it will be when the time comes.  It's made Tim and I both sad.  Tim spoke to his counsellor about the past few weeks at his session on Wednesday (he missed his Monday appointment as we were still at the solicitor's finalising the wills....oh, the irony).  

He said it's great to have someone he can just moan at and pour his frusration onto.  He's usually such a calm, take-it-in-his-stride person, but when you are watching the love of your life go through what I am and wondering what the future without her will bring, you need to talk/moan/whinge through it with someone objective rather than just drink your sorrows away (well, maybe along side that too! hahahaha).

Mum has also now agreed to get the ball rolling with regards to having some counselling too.  She's very lucky that she has one particular group of friends who she meets fairly regularly who will allow her just to talk and get upset if she needs to.  

However, we both have others who clearly find it very difficult to listen as they are mainly trying to protect themselves from their own emotions.  Personally I find it very, very frustrating when people say, 'oh, you'll be around for a long while yet', when, 'no', I'm afraid I won't be and the sooner we all get into our heads, the better.  

Mum and I have, in some way, both come to terms with that, I think Tim has in his own way too and we've discussed that we don't want to spend the time I have left moping around as you wouldn't want to look back on times where we've all the had the opportunity to spend with each other and regret just being miserable.

There are times when I get angry and frustrated and take it out on people because I can't do the things that I want to. I'm such a get up and go person and generally try and be as encouraging with myself as I can, but I'm not some super human.  

I'm not 'fighting' as I can't fight a one sided battle that my body will control...I will take everything that's thrown at me medically to try and give myself the best chance of a 'good life' with what time I have left, but there is quality of life to consider too.  It's really easy for people to say 'stay strong' but how....tell me how I do that?  Most of the time I do, and I honestly don't know how I do it, but I can't be pressured by other people's insecurities or rubber necking of my situation to do it, it can only come from inside me and those that truly live with me through this.

So on that somber note and at 2.50am I'll sign off.... I feel so woozy I can barely see straight.... cheap date!

Until next time readers. xx