Tuesday, 30 May 2017

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!


Tuesday, 23 May 2017

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.

Monday, 22 May 2017

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!






Thursday, 18 May 2017

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.




Tuesday, 9 May 2017

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.

Thursday, 4 May 2017

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.