Spinal Radiotherapy

4th June - Dr P comes to see me first thing in the morning and she agrees to palliative rads on my spine. This is to help alleviate pain rather than to destroy cancer cells.

My skin mets are getting worse each day 😟 It's very worrying and it feels like the cancer is eating me alive. Each morning it appears to be spreading more and more. It's terrifying. All I can think is that if it's doing that to my outside, what is it doing to the inside of me.

Later that evening, Alex, Mum and Colin visit. They help me with eating my dinner. The pain I'm in is just so bad that trying to eat is still very hard. After dinner we go for a walk and bump into Dr P, she takes me to her appointment room and I sign the consent form agreeing to have radiotherapy. I'm told that as it is a one-off blast, it will probably be very painful for the next few days and it may also upset my stomach because of the location of the blast.

5th June - Mish visits first thing and we have a good gossip. Ahead of the CT planning, I'm given a very strong painkiller to enable me to lay flat and still on the bed. I'm also given a Clonazepam to help calm me. Mid-afternoon I am wheeled down on my bed to St Luke's Radiotherapy Centre. There they roll me from my hospital bed onto the radiotherapy bed. I'm moved into various different positions and drawn on with marker pens. The team then disappear into their room away from the radiotherapy beams before returning and giving me little tattoos to make sure the correct area is targetted.

My PICC line arm is reacting more and more and is also beginning to swell 😞

My allergy to the PICC line dressing

6th June - Today I had my radiotherapy. I relaxed in the morning and about lunchtime I was taken down to St Lukes for the radiotherapy. I'm rolled from my bed onto the radiotherapy bed. I have to lie on my side slightly and then I have the radiotherapy. The rads itself doesn't hurt. It's all done within an hour, I'm wheeled back to my bed in Tilgate Annexe and I fall asleep. I end up sleeping through dinner. When Alex, Mum and Colin arrive later that evening, I am in severe pain. It is actually making me writhe and scream out. Alex goes and finds me something to eat and one of the ward nurses takes it upon herself to completely look after me. She gives me as many painkillers as I am allowed, as often as I am allowed them. In the end, I am so dosed up I fall asleep. I feel like I have only been asleep for a few minutes, so when I wake up I message Mum to see if they have just disappeared to the canteen. Turns out they had actually left 2 hours previously! I am in so much pain, I just hope it's worth it!

A Mixed Bag

Colin took me to my appointment today, bit of a mixed bag. They still aren’t sure if my spine is better or worse! I’m a complicated beast it turns out. Basically one of my tumour markers CA125 has risen a fair bit since they were last tested, however the other tumour marker (CA153) has gone down! They really aren’t sure what’s going on! So my onc wants me to have another MRI and a CT. These actually tie in with my regular scan checks anyway so all good. If the area at the base of my spine has got worse, then I’ll have to have some radiotherapy. Rads is fine though, I can defo cope with that.

My onc has asked me if I can be a case study! I’ll be written up (completely anonymously), as an example of not rushing into unnecessary treatment. So if another less savvy onc than mine had seem my brain scan and assumed it was mets, they could have gone straight to treating them. However, mine looked at my notes and considered my potential neurofibromatosis. Thank goodness she did.

Basically I have cytomas in my brain which are benign and are as a result of my NF1. She could have just assumed they were brain mets. So that’s why she wants to write me up! I’m interesting medically because:

- I was diagnosed young first time round, just 28

- I have secondaries

- I have neurofibromatosis type 1

Then we went up to Comet Ward for my denosumab, easy as ever, injection in the tummy and that’s it.

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.

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.

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!

Celebrate!

Today is a time for double celebrations.... It's my lovely hubby's birthday, and a year ago today I finished active cancer treatment :-)

6 Weeks Check-Up

Can hardly believe it's 6 weeks since I finished radiotherapy, blimey. Anyway, 6 weeks post-rads you have an appointment with your oncologist who looks after your radiotherapy. It's basically to check you skin is okay, not inflamed or broken in any way.

Rob & I drove to East Surrey, I had this sick feeling in the pit of my stomach the whole way. I knew I wasn't having any scans or anything but it was just the association with the hospital.

I went into the waiting room and as usual they were running 1/2 an hour late which did nothing to help my nerves.

Dr Zap then called us into his room and we had a chat and then he examined my skin. He said it looked really good and healthy with no signs of burning or irritation - hooray.

Silly Game: Help Dr Zap Kill The Cancer Cells

Rads Recap - Week 5

Only 2 sessions this week, then it's all done! Had a fab long Easter weekend, my second hen do, Cream Tea at the Hilton Green Park & then onto the Below Zero Ice Bar London

Tuesday - No session on Monday as was Easter Monday. Today they were running an hour and 15 minutes late - yawn! Still it was a boost again so over nice and quickly. I am getting a few stabbing pains around my scar now but this is apparently completely normal - just annoying!

Wednesday - The last one is done - YAAAAHHHHOOOOOOOO!!! Yes there was over an hour delay but I don't care coz I have finished active cancer treatment!!!!! :-) Today is also my fiancé's 30th birthday - what a good day!!!!

Rads Radio

So I've spoken to a few girls who have had rads already and they all mentioned I should listen out for the music played each day in the rads room. It's all down to the radiographers choice so some people have had rock and others have had elevator music.

I thought it would be like a countdown type thing if I kept a record of what is played in the rads room each day.

So here goes starting with yesterday's choice of.....

1. You Don't Know You're Beautiful - 1D (Ironic as I felt really beautiful lying in an awkward position with my boobs out to the world #sarcasm)
2. Jar of Hearts - Christina Perri
3. Summer Sun - Texas (which contains the line "Here comes the Summer Sun, he burns my skin" #irony....)
4. Beautiful Day - U2 (it was sunny yesterday, today was peeing with rain so not such a beautiful day!)
5. Marry You - Bruno Mars
6. I Just Called to Say I Love You - Stevie Wonder
7. Day 7 was cancelled because of the snow! Booooo
8. Girls Just Wanna Have Fun - Cyndi Lauper
9. Today there was radio silence - no music :(
10. Cheers (Drink to That) - Rihanna
11. No music again today!
12. They love a bit of Cyndi Lauper - Girls Just Wanna Have Fun (again!)
13. Beneath Your Beautiful - Labyrinth & Emeli Sandi (Like the song but the grammar offends me! #GrammarNazi) 
14. Big Big World - Emilia
15. Cleopatra's Theme - Cleopatra (old school!)
16. Come Away With Me - Norah Jones
17. Radio Silence today as was in a different room and being marked up for my boosts.
18. Hot Right Now - DJ Fresh - Pretty dance inducing music seeing as you're supposed to be lying as still as possible!
19. The Lazy Song - Bruno Mars
20. Vertigo - U2
21. The Final Countdown - Europe (what a tune to finish with!!)

Rads Recap - Week 2

So by the end of this week I will be half way through - Let's go!

Monday - Yesterday was Mother's Day and as I had an early appointment today it made sense to stay at Mum's overnight and then go on from there. Woke up and overnight it had snowed! Luckily it wasn't too thick and mum had offered to drive me. Got to the appointment in time, delay of only 1/2 an hour today! So confused how they can be late when my appointment was the second of the day! Ah well.

Tuesday - Snowed even more overnight. Horror stories of people stuck on the A23 for 7 hours so today's appointment was cancelled. Means I get one added onto the end on Rob's birthday which is pants but ah well.

Wednesday - Today Michelle had the day off so she kindly offered to drive me in. We left extra time because of the snow and I was actually seen EARLY! Stopped for a bite to eat on the way home and then into work for the afternoon.

Thursday - Work in the morning and then Col kindly drove me in. Running an hour late today & then the journey home was a bit pants as we got stuck in rush hour

Friday - Appointment in the middle of the day today & Rob was able to take me in.

Now for a fun wedding-tastic weekend of final food tasting, groom's party fitting, make-up trial & dress fitting!

Rads Recap Week 1

So I've now completed my first week of radiotherapy. My skin has been holding up okay, although it has gone a little pink and dry. It's bloody tiring going to work and to Guildford every day but needs must.

My first appointment on Monday was a bit of a pain because I turned up ready to go, having arranged all my rads times with work, asked my mum to help me out with some of the driving and fitted the rads times around other appointments (wedding dress fitting, final wedding tasting, hen party & holiday to the Norfolk Broads); so imagine my delight (sarcasm...) when they gave me a new schedule of times, all different & with 3 more added to the end which meant I now have rads on Rob's birthday and fecks up the Norfolk Broads holiday.... Not impressed.

I was nervous anyway and then to have been given that new sheet and then to be told that the machine had broken down earlier that day and therefore was running 2.5 hours late was not a good start :-(

Tuesday was better, they were (only!) running an hour late and they gave me a more concrete timetable and had managed to change the times of the important days. Still was looking at 3 extra sessions though #NotImpressed

On Wednesday it was all okay, had an early appointment (09:06) so they didn't have time to run late! They also changed the time of my wedding dress fitting and wedding tasting appointment back to what they were before which is good. Still have the extra ones at the end though, boo. Still, one more over and done with and then straight onto work.

Thursday I had a booster mark up where they drew on me with permanent pen to get the exact area they need to do extra zapping on when I have my boosts at the end of the 3 weeks. I managed to speak to Dr Zap himself (as he was doing the boosts) and asked him why all my times had been changed and why I had the 3 extra boosts added onto the end. He said that 8 boosts was the new standard but that he was happy for me to have 5 instead so that means I'm back to finishing the day before Rob's birthday - wohoo :-)

On Friday my appointment was perfectly on time but it meant I was out of there at 5pm. 5pm on a Friday in Guildford is not a pretty sight. Took me 2 hours to get home #IHateRushHour

Still I'm now 1/4 done - Huzzah!

High Five!

Today was results day of WLE #2. I'd managed to almost put the thought to the back of my mind and then as Andy came down to stay after a work meeting in Gatwick on Thursday night I didn't really think about it until I went to bed. So after a very restless night and all morning feeling sick, Rob drove us to Redhill for my meeting with my surgeon and BCN.

Sat in the waiting room at 10h45, waiting for my 11h00 meeting, I thought my heart was going to beat out of my chest it was going so fast. Annoyingly they were running 40 minutes late, which didn't help my nerves one bit.

Eventually my name was called, my legs were so wobbly I thought I was going to fall over as I walked to the room. As soon as I walked in the door (I didn't have time to even sit down or take off my coat), my surgeon shook my hand and said "We got it", I think I didn't hear him properly so I said "sorry?" and he said "we got clear margins".... I promptly burst into tears and high-fived him!!

What is a clear/negative margin:

He then told me that I would need 3 weeks of radiotherapy (aka rads - which is the minimum time they can give it to you for) and (as my BC is ER+) to take Tamoxifen for 5 years. I have to start the tamoxifen straight away and the radiotherapy will start 6-8 weeks from the date of my operation, so that will start around 5th-19th March.

My BCN then had a quick look at my scars, one where I had my SNB during the first operation and the other where I had both WLEs (they went in the same incision during the second op) and she said both were healing nicely. The reason there is the 6-8 week wait from the date of the operation, is that they need to make sure the skin is completely healed before they start rads on it.

I have a planning meeting on 11th February when I'll find out a bit more about what radiotherapy. involves. Until them, I'm off to celebrate!!