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.

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!

3 Year Cancerversary

3 Years ago today I heard the life changing words of "I'm sorry to have to tell you that it IS cancer". As I blow out my 3 candles today, I think about the YBCN angels and how very lucky I am.

Here's to lots more candles :-)

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!

Olivine

This evening I went to Olivine & Alison - a lady I met at the BCC Brighton Forum - came along too which was cool and she seemed to enjoy it.

Having not been there since November, it was a good opportunity to let them all know where I was in my treatment schedule (last time I went I was a fortnight post last chemo), to pick their brains about radiotherapy (my next lot of treatment) and to show off my hair!

When we got to Olivine, Marilyn. gave us something called a Big Box of Love, you can read more about the idea and how the company was born here. It was an enormous box and me & Rowena unwrapped it and I read the letter enclosed out to everyone. We then all got to unwrap a pressie :) I got a fab lavendar bath set, Alison got some bath salts, Rachel got Bathing Honey, there were nice notebooks, a make-up set, make-up bags and other bits - was really generous and what a lovely idea to send to people when they are having treatment to pick them up.

Sometimes at Olivine, we have someone coming in to talk to us, in the past there has been nutritionists, crystal healing, my new hair; and tonight we had a lady come in from Pretty Permanent Make-Up.

She spoke about what permanent make-up is and about the different types of permanent make-up that you can have. Although not my cup of tea (I'd be too scared of the needles!), the results did look pretty fab :)

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!!

Good News

Hoooooooooooray!!

Today I went to the surgeon to discuss the results of last weeks' MRI & mammogram to see whether I would need an MX or a Wide Local Excision (aka WLE). When we last met (because of the microcalcifications that were present when I was first diagnosed) they were erring towards the MX. However, chemotherapy has worked its magic :) I appear to have had 'a complete radiological response to chemotherapy' so the whole MDT are really pleased & I am now having a WLE instead.

Am booked in for surgery on 18th December, so although I'll feel tired for Christmas, at least it won't be the larger operation they were contemplating. Does mean I will need around 3 weeks of radiotherapy in Guildford every day (100 mile round trip) starting sometime in January, but that'll be another road bridge to cross when I come to it....

Little postcard from Han