Rads Marathon

So my rads marathon is done. I'm not going to say "rads are finished, hooray" because there will more than likely be more rads zaps in my future. For now though, I'm glad this schlep is over. 21 days has been tough, I'm absolutely exhausted and need to take some time to rest and be kind to myself before the next chapter starts.

No More Cake

5 years ago, it's oh so clear,

In the waiting room, the rising fear.

Walking into that stuffy room,

Increasing dread, impending doom.

I'm so sorry, the surgeon mumbled,

And my whole life began to crumble.

I made it though the treatment plan,

Got married to a wonderful man.

I'd been given a reprieve,

We'd picked our kids' names; Alfie, Niamh.

Every year upon this date,

I'd put a cake upon a plate,

Adding candles one by one,

Blowing them out, reflecting, another year done.

Another year of being me,

Another year of cancer-free.

In the blink of an eye, that all has changed,

My whole future rearranged.

Today there's no cake upon a plate,

There's no 5 years to celebrate.

My cancer is back, this time it's worse,

It's like I have some kind of curse.

Stage 4 (or mets) means there's no cure,

So a new plan I must endure.

Treat it for as long as they are able,

Keep it at bay, keep me stable.

The darkest thoughts inside my head,

I'd written myself off, I was already dead.

The oncologist dilutes my fears,

He says "you could have years and years".

There it is, the bubble of hope,

Something to cling on to, to help me cope.

So currently I'm being fried,

With radiotherapy to keep me alive.

They'll take my ovaries, an oophorectomy.

Will I feel less womanly, will I still be me?

Then move on to new hormone pills,

I'm hoping the side effects won't make me ill.

Constant monitoring, blood checking, scans,

Are all a part of my new plan.

As I find my new normal and readjust,

Forgive me, it'll take time to get it sussed.

"Eat Life" a wise friend once said,

I'll seize the now, for no-one knows what lies ahead.

I may have not made the magic five,

But I'm bloody thankful I'm alive.

PET Scan

So today (one month on from receiving the dreadful news) I had to have a PET scan. That takes me to 8 appointments this week (5x rads, 2 x oncology appointments and this PET scan) at three different hospitals. I am absolutely exhausted, this is fatigue like I have never felt before. I cannot think straight or even string a sentence together. Typing this is probably a stupid idea. In fact, it definitely is. TBC after a sleep.....

It's amazing what a restorative sleep can do! Feel betterer enough to type and actually make sense!

So this morning I had to have a PET scan at Guildford so that there are baseline scans to compare things to if I get on the drugs trial. I had to fast for 6 hours before and drink a litre of water. We arrived at the imaging unit and I was taken in to the scanning area. There I was given a radioactive glucose injection in my arm and then had to lie down for an hour (no reading, no phone, no iPad) whilst the radioactive material worked its way round my body. After the hour I had to pee so I had an empty bladder and then was taken to the scanner. It was a bit like the CT scanner I'd seen before but more enclosed. I had to lie on a bed, arms above my head and not move. The scanner whirred around me and I moved through it. Half an hour later I was done. You don't feel anything whilst having it, just a bit claustrophobic. Then I had to pee again (they like you to get as much of the radioactivity out of you as possible) and I could leave. I'm not sure if I will actually get sight of any results from this or not, I suppose only if it brings any bad news of spread elsewhere. Whilst I am hoping beyond hope this is not the case, I am pretty convinced it's on the other side of my hip as this area is hurting very much at the moment. At least I know that if this is the case, I can have rads on it or the upcoming systemic treatment (whatever that may be) would get it. At least I'm in the system now.

Not Just Pissing in the Atlantic

A busy day today! First I had rads, halfway through the bastard blasting now - huzzah!

Then Mum drove me over to Guildford (collecting Rob en route from his office) for a meeting with my trial oncologist. After a delay of an hour (boo!) we had a bloody positive meeting! Basically it looks like I might be eligible for a new hormone therapy wonder drug called Ribociclib which my oncologist (probably late 50s/early 60s) said, "when taken with letrozole, is one of the biggest drug breakthroughs in treating secondary breast cancer that I have seen in my entire career"! He said that whereas previous advances in treatment of secondaries have been a bit like pissing in the Atlantic, on early trials of this drug, 100% of people saw some sort of improvement. The median being 30 months of PFS compared to letrozole alone which is more like a year. 

However, to have this hormone drug I have to be post-menopausal. Tamoxifen that I'm currently on is for pre-menopausal women and as my cancer grew back on it, it obviously isn't working for me any more. This therefore means I will have to have an oophorectomy, aka I will have to have my ovaries whipped out straight after rads. But, if I can't have children anyway now, then I guess why not. 

So, a lot to take in, but as long as I pass the eligibility criteria (which the onc said he saw no reason why I shouldn't) and complete the eligibility trial period of scans and blood tests, then I'll be on the trial. Please keep your fingers crossed for me!

Sleeping Lions

I've reached the end of my first week of radiotherapy. I started my chest and ribs rads on Wednesday. It has been pretty much the same process as with my hip, I go in to the room, lie on the "bed" of the machine and put my arms above my head. The radiographers then move me into the correct position and leave the room. I'm told to stay as still as possible, like a really shit game of sleeping lions, apart from in this version your prize is actually zapping the right area if you don't move, as opposed to winning a bag of sweeties.

Then the machine whirs and moves around me. With every beep and noise I hear I chant the mantra "kill, kill, kill, die, die, die" and I picture the cancer cells being obliterated. It might sound ridiculous, but that's what the rads is supposed to be doing, so why not! Then the team come back in, lower the bed, I get (hobble) off and I'm free to go. The whole process from entering the room to leaving to dress takes 10 minutes.

So far I'm feeling okayish. On Wednesday night my hip was really sore, I was lying on the sofa crying. I took ibuprofen and put a hot wheatbag on it and the pain subsided a little, but it did shake me up a fair bit. I know this is all real, but feeling actual physical pain made it more so. It feels a bit better today though, so hopefully it will just feel betterer going forward.

Who Are Ya?

Update 30/05/2017 - 79 countries and counting!

As part of my blogger set-up, I get to see where people who read my blog are from so thought it would be fun to share with you all & update it when there's a new country.

So far I've had readers from:

1. American Samoa
2. Argentina
3. Australia
4. Austria
5. Bahrain
6. Bangladesh
7. Belgium
8. Belize
9. Bosnia and Herzegovina
10. Brazil
11. Bulgaria
12. Cameroon
13. Canada
14. Chile
15. China
16. Colombia
17. Croatia
18. Czech Republic
19. Denmark
20. Ecuador 
21. Egypt 
22. Estonia
23. Finland
24. France
25. Georgia
26. Germany
27. Greece
28. Hong Kong
29. Hungary
30. Iceland
31. India
32. Indonesia
33. Iraq
34. Ireland
35. Isle of Man
36. Israel
37. Japan
38. Jersey
39. Kenya
40. Laos
41. Latvia
42. Malawi
43. Malaysia
44. Maldives
45. Malta
46. Mexico
47. Moldova
48. Netherlands 
49. New Zealand
50. Nigeria
51. Oman
52. Pakistan
53. Panama
54. Peru
55. Philippines
56. Poland
57. Portugal 
58. Romania
59. Russia
60. Saudi Arabia
61. Serbia
62. Singapore
63. Slovakia
64. South Africa
65. South Korea
66. Spain
67. Sweden
68. Switzerland
69. Taiwan
70. Thailand
71. Trinidad & Tobago
72. Turkey
73. UK
74. Ukraine
75. United Arab Emirates
76. USA
77. Uzbekistan 
78. Venezuela
79. Vietnam

That's pretty cool!

Through my chemo brain fog, I hadn't actually appreciated where certain places are (!)

So here's a link to a world map with pins showing the above countries for other geographically challenged people!

Blast Off

Today I had my first rads session at St Luke's. Rob drove me to the cancer centre and we parked in the dedicated radiotherapy parking area. It's good that you are provided with a free parking permit for radiotherapy, otherwise it would work out really expensive. I understand that there is a need to maintain carparks and keep them in good condition, but charging people to park in hospital carparks is something that majorly pees me off. Macmillan have a campaign to get rid of these charges for cancer patients. (I think it should be free for everyone tbf but it's a start). Please click here to sign the campaign.

Anyways, off my soapbox! After waiting for a bit, Rob and I were taken to the rads planning room and had the procedure explained to us. Then Rob went back to the waiting room and I was taken through to the rads changing room. I got into my gown and then went through to the room where the big bastard blasting machine was. I lay down on the table, the radiotherapy team positioned me in the correct place and then they left.

The machines started whirring and moving around me, making beeping noises like some really shite fairground ride. It lined up on my hip area, made more noises for about 3 minutes and then whirred and moved under me and did the same thing. And then it was over. Simple as that. I don't think I felt anything during it but afterwards it felt a little like I had brushed against nettles. At least I think it did. It may have all been in my head. Who knows!

Apparently I won't feel side effects from this blast for a few days/a week or so. I'm already armed with some gentle moisturising cream and some 99% aloe vera.

Tomorrow the rads starts on my chest area. 1 down!

Master Blaster

I had my rads planning meeting at St Luke's today. Mum drove me, I'm very lucky we're so close and that she only lives 5 minutes from me. I've also come to the conclusion that this would be shite squared if I had children. So although I'm unbelievably sad that I don't (and won't) have kiddies, doing this with them would be much worse. 

Anyways, arrived at the rads centre at East Surrey and they had no record of me, joyous start. Turns out they had my details from 2013 when I last had rads and had a different surname - genius. 

I'm eventually taken into a room to chat through the usual confirm your details, sign the are you pregnant form (gee thanks. I know why, but how about another sucker punch?!) and told what's going to happen and what the process is. 

I'm then told I will have rads on my hip (the one-off mothership big blast) either this Friday or next Tuesday. Brilliant, let's get going! Then they said your sternum and ribs rads will start 12th June. And I lose my shit. I've already been pissed around by my GP misdiagnosing me for so long (another post about that coming soon...!) If I wait another 3 weeks who knows where else this bastard will go. Then I cry. My mum turns into Mummy Tiger protecting her cub. She pleads, offers to pay, puts her foot down, says "we are not waiting that long, please see what you can do", firm but fair. Literally we are begging this lady. It's not her fault, computer is just saying no, I get that she gets it. It's the system, it doesn't take feelings into consideration. She disappears saying she will talk to Dr Zap. Comes back 20 minutes later (in the meantime I've been shrieking at my poor mum saying I cannot wait that long) and says, we will try our best to bring it forward. Harrumph.

Then off to the planning area, I have to undress and put on a gown, (no sparkly shoes this time!) and am taken to the room where the CT machine is. This scan is far, far less scary than the one from just two short (who am I kidding, the longest fortnight ever) weeks ago. I lie on a hard bed and am placed in a very specific position with my arms above my head. A beanbag type thing is moulded around my arms. They find my tattoos from last time and start drawing all over me with pen. Well this is rubbish. It's freezing and I'm trying not to shiver as you're not allowed to move. They then mark the area on my hips with two tattoos. Just little tiny blackhead looking dots. Now I have 5. 3 from before and now 2 more. Bet you're jealous.... These are to show the therapy radiographer where to aim the bastard busting beams.

Then they do the upper area, they put a sort of waxy skin on me. I think it's to protect my skin from the intensity of the rads but I can't remember. TBF it's been info overwhelm/overload so I'm allowed to forget a few things!

All of this is done in about an hour. We're then called back to the room from earlier. Hip rads confirmed for next Tuesday. They're still waiting on news about the sternum/ribs and will call me today or Thursday (feck knows what's wrong with Wednesday).

Mum drives me home and they call me an hour later. Wonder Woman has got the sternum/ribs start date brought forward to next Wednesday, as in the 31st May. It appears losing your shit and crying seems to work sometimes.

In the afternoon Rob has his follow-up appointment at Worthing hospital (2 hospitals in one day, lucky me!) after his horrible, horrible time with diverticulitis a year ago. In fact we realised he went into hospital a year ago to the day I got my diagnosis. May 17th can do one.

What Shall We Do With The Drunken Sailor

As in hooray and up she rises. As in my mood is no longer in the dark, dark place it has been.

After the meeting with the harbinger of doom last week I was in a very bad place. She made me feel like I was written off, like there was no hope. I spent hours, days trawling Dr Google (I know, I know!) looking for another me, desperately searching for answers. YBCN, MacMillan, BCC = good, random websites = very very bad.

In contrast to the dark times, the outpouring of love, messages and kindness has been really wonderful and I feel very blessed to have you all in my life.

What is very hard is people's lack of understanding however. Messages saying "we will beat this" are heartfelt and come from the right place, I just wish I didn't have to say that I will never be able to beat this. Stage 4 means it's treatable but not curable... However, I refuse to sit around like the ink is drying on my death certificate, I will fight this for as long as I possibly can.

Today I met with Dr Zap (déjà vu) and he was so much nicer and actually apologised for the HoD's bedside manner - or lack thereof! He gave me a plan. I'm such a planner and this lack of control for the past weeks has been the absolute worst.

So first things first, 4 weeks of daily (weekday) radiotherapy (aka rads). One big one off blast to my right hip/pelvis, not left as the HoD said, and 4 weeks worth (every weekday) to my sternum and ribs. They will tackle my shoulder at a later date. 4 weeks every weekday is a long old slog but let's look at it as each trip will be killing a bit more of the bastard c.

I'll be coming off tamoxifen and going on to something else, again tbc. This is because the cancer has the same makeup as last time, it's ER+/PR+/HER2- so it feeds on oestrogen which in turn means they need to shut down my ovaries. I'll probably have something like zoladex but again tbc as Dr Zap is my rads man I'll need a different oncologist to confirm this. 

Although it's a still absolutely terrifying, I'm no longer immediately planning my funeral. Dr Zap said on numerous occasions "our aim is to get this into remission".

Rads planning meeting will be tomorrow, good they're getting going quickly I guess!

Eminem

The post I never wanted to write.

As genius lyricist Eminem once said "Guess who's back, back again?" Well fuck. My cancer is back. Not only is it back, it's now what's known as Secondary Cancer. This means it has spread outside of where the primary cancer was and are growing in a new part of my body. In my case it has spread to my bones. To be more precise, to my ribs, my breastbone, a small bit in my right shoulder and a small bit in my left pelvis area. The lump I had biopsied is also cancer. And I have some in my glands behind my breastbone. Well fuckadoodledoo.

Mum, Col and Rob came to my appointment with me, as I walk into the specialist's room I see 4 chairs, I see the specialist's sympathy tilty head and I know. She doesn't give us any bullshit and tells us straight, it's not good news. She tells us where the fucking bastard is and that I'll be seeing the oncologist on Monday to make a plan. Rob is in tears, I can see my mum shaking and Col has gone white. She can't or won't give me a prognosis. I presume this is the oncologist's call.

The BCN Chris leads us all to the Doom Room (it's not called this really, it's just the place you're led after having been given shite news. Hence the Doom Room). I've been here before. Almost 5 fucking years ago. I almost reached the magic number 5. She gives us some pamphlets and goes through more slowly what the specialist told us. It's likely I'll start with radiotherapy and then chemo but I have to wait until Monday for a full plan.

As I write this, I think I'm in shock. I feel disassociated from reality. How the fuck am I supposed to wake up tomorrow and deal with this. I'll never be a mummy now. I'm going to die (not yet Grim Reaper - piss off) at some point in the near (in the grand scheme of things) future. I'm not ready to die.

I've told the people closest to me. If love could cure cancer, I would be the healthiest person in the world.

CT & Bone Scan

Today I had my two scans at East Surrey hospital. I slept so badly last night, I'm so fecking terrified. My mind is going to some really bad places, running down rabbit warrens, on and on, it's impossible to stop it. I know I don't know yet but I'm pretty convinced it's going to be shitty news.

Anyway, I had to be nil by mouth from 06:40, 4 hours before the CT scan (not hard, I can't eat at the moment anyway, I projectile vomit, 6lbs lost since Thursday...). We drove to the hospital with me trying to drink water (you have to drink a litre in an hour before the scan) and not vom. We signed in at the reception and then I was led away, told to put a gown on and was then led through to the CT machine. I had a drip thing put in my hand and started crying. The team were really nice and explained everything that was going on but lying under the whirring machine brought everything crashing down and smacked me in the face. Basically they are checking my organs for cancer. If there is cancer in the organs I will die from it. Cancer in the organs or bones is treatable but not curable, and that's the rabbit warren I've been going down.

Then I went round to nuclear medicine and had a radioactive dye inserted into my veins and was told to go away for 3 hours to give the dye time to get around my body.

Rob and I left and went for some lunch but I am literally finding it impossible to eat, everything makes me want to hurl. In the end after a lot of debate I chose an open chicken sandwich, I managed about 8 mouthfuls before I had to run to the loo to be sick. I'm in such a state of overwhelm my body just rejects everything. It's so bad as I need to keep my strength up but I'm finding it so hard.

We head back to nuclear medicine and I have the bone scan, it takes 22 minutes exactly. I'm lying on a bed (my head saw it as a mortuary slab - told you I was in a dark place) and a camera starts at the top of my body taking photo after photo until it reaches my toes. And then it's done.

I should have the results from these scans and my biopsy all in one go next Tuesday. Basically if it is cancer, they want to be able to tell me everything all in one go. It's shit I have to wait but it does make sense that way.

Fucksticks

P.S. Scans are shit but sparkly shoes are always amazing.

Fucksticks

I've been so scared that the doctor had misdiagnosed me that I kept on going for appointments and pushing and being a general pain in the arse.

Thank fuck I did. On Tuesday I went to the breast specialist who felt my areas of concern and told me she was "not concerned" but that she would refer me for an ultrasound anyway.

Today I had that ultrasound and they have done a biopsy as they have spotted a bit they want to investigate further. But basically they think my cancer is back. I have to wait a max of 7 days for the results to come back and they are also booking me in for a bone scan and a CT scan. Holy fucking shit.

Tietze Syndrome

Cancer is the gift that keeps on giving. I'm currently really suffering from something called Tietze Syndrome. As I said in January I was shitting myself as I had swelling in my chest but the docs said it was nothing to worry about and diagnosed me with costochondritis. Well since this appointment, it's become more and more painful, at one point at work I sneezed and it hurt so much that I cried out in pain. It's been a struggle to get myself dressed, to drive, to just walk around as normal, it's really painful :( Because my costochondritis is accompanied by swelling, I actually have Tietze Syndrome.

I ended up going back to the doctor who has prescribed me a two week course of naproxen which is supposed to reduce pain and swelling, let's hope it helps!

Wikipedia says:
The main presentation of the syndrome is significant, acute pain in the chest, along with tenderness and some swelling of the cartilages affected, which is commonly palpable on examination. Perceived pain is often exacerbated with respiration, although many times it can be extremely painful, to the point of being debilitating.

Illustration By Henry Vandyke Carter - Henry Gray (1918) Anatomy of the Human Body

The reason I started this post with "cancer is the gift that keeps on giving" is because I have found out:

Patients who have had radiation therapy to the chest/breast will often experience this syndrome which can occur shortly after therapy or years later

Thanks universe, I must have been a right shit in a past life....

Mammogram 4 years on: Situation Normal!

Finally got my mammogram results. Had to get them in the end by calling my BCN, almost a 4 week wait is pretty bad! I know the longer you wait, the more likely it is to be okay, but still they really should let you know. Waiting is the worst.

But anyway, everything is okay!! Yippeee! My BCN actually told me something I never knew, mammograms are graded from M1 > 5, with 5 being the most distorted. She told me that both sides (as in both boobs) showed as M1 and that if they could have been M0 then hey would have been! Huzzah!

Mammogram - Year 4

So today I had my 4 year mammogram, it was definitely a case of history repeating itself. Basically a copy paste of my last mammogram....., apart from swap Michelle for Rob. Other than that, same feelings, same scanxiety. Everything the same.

A few of my BC buddies question why I have my mammogram now, given that 2017 is actually 5 years since I was diagnosed, people that were diagnosed in the same month as me, have it from diagnosis. My trust have just always done it this way, so it's from when I finished treatment (other than rads), basically from when they told me all the f*cker was out of me. Hopefully this one will be okay, then I'm one year closer to the magic 5 year mark.

Costochondritis

I have a confession. I've had a swelling around my ribs since just before Christmas. I fiddled with it, it got bigger. I panicked and went to the doctors a fortnight ago. I hardly told anyone as saying it aloud made it too real and I wasn't in the right space to even consider what it *could* mean.

I went to the docs a fortnight ago, he confirmed there was a swelling and ordered an x-ray, underlined on the notes to accompany the xray order was "previous history of bc". Feck. Luckily they could do me an xray immediately. We drove to Horsham hospital, had the scan and that was that.

I waited a week for the results, all normal. But the swelling is still there. Docs don't seem concerned but that doesn't appease my overactive brain. I now know what it's not, but I don't know what it is. I request another appointment for a weeks time to discuss it.

A few days pass and I give in and google, one case of bc metastasis to the intercostal muscles recorded ever in the UK and I convince myself I'm going to be the second. Not sleeping, stressing, feeling sick etc etc.

Went back to the docs today, apparently a virus and/or an injury caused me to develop something called Costochondritis and then my fiddling made it swell more. With costochondritis it can take months for the swelling to reduce. Plus where I've lost weight (over a stone since October!) my bones are sticking out more which makes it more prominent. Phew.

Hooray for sticky out bones and a virus!

Chemoversary #4

I can hardly believe that today is my 4 year chemoversary! I am definitely "moving on" as it feels like a horrible distant nightmare rather than thinking about it every single moment of every single day.

Given that it's October and Breast Cancer Awareness month (though who isn't aware of breast cancer god only knows....) it's an ideal time to remind you all to do your monthly checks. Young, old, male, female, we can all (unfortunately) get breast cancer.

If you're not sure what you're looking for, there's a handy checklist from the NHS at the following link: Click Me

#FourCandles

It's so bizarre that I am now blowing out 4 cancerversary candles, the time really has gone so fast.

This time 4 years ago I was given the worst news of my life, as I blow out my 4 candles today (actually I cheated and blew them out on Sunday as today I'm having an absolute blast wandering around German vineyards!) I reflect on how fortunate I am.

Here's to loads more candles 😊

P.S. It's impossible to write four candles without thinking of this cracker of a sketch.... 

Check Up

Today I had my annual appointment with medical oncology at Redhill. Even though I've been feeling well and I give myself some TLC (Touch, Look, Check) at least once a week, there is just something about the familiar drive to the hospital and the familiar walk to the outpatient's department that makes me feel sick. 

The rational part of me knows that I haven't felt any lumps and that should give me security but all rational thought really goes out the window. Especially with Rob being so poorly lately - don't ask... 2x hospitalisations for diverticulitis and associated complications - one hospital stay was 10 days long :( , my emotions have been tested like never before.

We were waiting in a stuffy, non air-conditioned room for over an hour and a half. The note on the board said they were running 25 minutes late, no-one bothered to come and explain or even acknowledge the people waiting. Really poor show as people's emotions just become more heightened and fraught. 

I was eventually called through and was seen by my oncologist's registrar. She asked how I'd been feeling and told me that in a few years once I've done 5 years on tamoxifen we can try for kids (yippee - 3 years down already)! She then gave my boobs, armpits, collar bone and back a feel and told me everything felt okay and that she'd see me in a years' time. 

Hooray, some good news after the stress of the past month 😊

Ellie's Friends

The Eleanor Rose Foundation is an amazing charity whose motto is "Making the big C smaller". They offer freebies and discounts for adults living with and recovering from cancer. It was set up in memory of Ellie Jeffrey who died from secondary breast cancer at the young age of 29.

I have been applying for some of their freebies for about a year now and last week I was delighted to receive an email that I had won a Heat Magazine Beauty Giveaway worth almost £300!!!

In my beauty bundle was:

- Masque Bar Brightening Sheet Mask

- The Body Shop Drops of Youth

- The Body Shop Drops of Light Day Cream

- Scottish Fine Soaps Co Tangled Rose Body Butter

- Nails Inc Nail Polish in Portobello Terrace

- Nails Inc Nail Polish in Chelsea Grove

- Nails Inc Nail Polish in Charlotte Villas

- OPI Nail Polish in Humidi-Tea

- L'Oréal Paris Nail Polish in Greige Amoureux

- Urban Decay Gwen Stefani Lipliner in Rock Steady

- Barry M Matte Me Up Lip Crayon

- Estée Lauder Bronze Goddess Bronzer

- Bourgeois Rouge Velvet Lipstick Wand in Beau Brun

- Max Factor Lipstick in Marilyn Sunset Red

- Kiko Milano Multicolor Blush

- HD Browtec Eyebrow Pencil

- The Body Shop Camomile Cleansing Oil

- Mïnk & Co False Eyelashes

- Feel Unique Eye Brush Capsule Collection

Thank you so much Ellie's Friends and Heat, I feel very lucky!