The Greek Dyno-Rod

⚠️ Epic post alert ⚠️

We had been in the Isle of Wight for a few days and I noticed I was getting more and more breathless.

Rob, the doggies and I went for a lovely coastal walk along the cliffs, but it involved scrambling, stairs, stepping stones, pebbles along the beach and steep climbs. The end of this walk was a steep hill, and at the top I was so breathless I thought I was about to vomit and/or pass out.

In the end, just walking from the bedroom to the toilet in our holiday flat was leaving me out of breath. Rob made me go to a local GP on the island and thank goodness he did.

I got to the GP and she examined me and then requested I do a blood test called a D Dimer as she was worried I might have a pulmonary embolism! They were able to do it then and there in the doctor's surgery. So they did the test. The result came back in 20 minutes. Normal results are less than 500µg/L and mine was 1,200! My heart rate was also about 135. That meant a trip to A & E.... 

We rushed back to the flat and let the doggies out to pee and then headed off to the island’s only A&E in Newport. We waited for a small amount of time and then after triage I was taken straight to the ER beds where I had to have a blood test and a cannula.

Then I had an x-ray of my lungs. Basically the result was that I didn’t have a pulmonary embolism but I did have something called a pleural effusion:

Pleural effusion, sometimes referred to as “water on the lungs,” is the build-up of excess fluid between the layers of the pleura outside the lungs. The pleura are thin membranes that line the lungs and the inside of the chest cavity and act to lubricate and facilitate breathing.

Image from pedilung.com 

So that explained my shortness of breath. Basically as the effusion grew larger, it meant there was more fluid in the lining. It meant it was getting harder for my left lung to expand and therefore more difficult for me to breathe. There was chest pain because the pleural lung was irritated. 

The xray results showed that I had 2.2l of fluid on my left lung! That’s over a big bottle of cola in my lung. Think how heavy that is. And I’m only 5ft1! No wonder I was breathless and sore....

The procedure to get rid of the liquid is called a thoracocentesis, basically they insert a ruddy great needle into the pleural space around my lung and then drain off the fluid. Sounds simple enough but pretty ruddy painful. Now you should understand why the post is named Greek Dyno-Rod!

The only drain option on the IoW was a slow drain and I would have had to have been in that hospital until Sunday. Our accommodation was due to run out on Friday, this was all happening on a Wednesday. We had the dogs so obviously would have had to have found dog friendly accommodation. Therefore we put our foot down. We wanted to travel home. The doc was unsure as if there was an issue on the ferry I would have had to have had a helicopter called out! He asked his consultant who gave us the okay to travel. As soon as we got the okay and they had contacted East Surrey to arrange the op there we were out of there!

We rushed back to the flat, Rob heroically packed it all up and we drove to the ferry terminal, crossing fingers all the way that they would let us on. Thank goodness they did.

We turned up bright and early at East Surrey on Thursday only to be told there was no-one there that could do the op!! As I was breathing without oxygen they told me to go away and come back the next day! So as we were on holiday still, we made the most of it and went and saw the new Avengers movie 🙂

Try again! Friday we turn up at East Surrey and this time they say we’re on the list and can come in! Rob and I wait for a while and then I’m sent for another x-ray. Normally when you have a scan of any kind the people taking the images are pokerfaced and say nothing. This time, the man takes the image and then says "how long have you felt this poorly?" I say "oh a few days, I know about the fluid as I have had a scan already". He then says "Ah okay, I was wondering! Most people complain about fluid at 300ml, you have 2,200ml; you're hardcore!"

I then go back to Kingsfold Unit, wait for about an hour and then go through to a side room. The doctor and a trainee explain the procedure, ask me to sign a consent form, give me an ultrasound over my ribs so they know where to shove the ruddy great needle and it begins!

The doctor gives me an anaesthetic and some oramorph and then puts the 15cm screwdriver type needle into the pleural space and attaches a drain. Loads of liquid begins to drain out and I'm taken to the recovery ward.

Just a small needle.... 

The liquid continues to drain out and then the pain begins. As the liquid dissipates, my left lung begins to reinflate. The pain is fecking hideous and I roar and shout a lot. I also cough continually as the air begins to fill back in. It hurts so much.

The doctor comes over and gives me some more oramorph. The morphine makes me feel groggy and I have a sleep. About an hour later I wake up and we're told we can go home.

Here's a photo of me smiling (wtaf!) with the drain in, the 15cm needle and the liquid, which I promise you is not pee!

Thank you Mish xx

Results....

I am fecking delighted to let you know that the cancer in my sternum that was causing the most concern is gone! The cancer in the lymph nodes affected is gone! The rest of my affected bones are stable and there is no spread to my organs. Yes I still have cancer and always will but for now treatment is working!

Mother's Day

When cancer has taken away your possibility of being a mum, Mother's Day is particularly hard. The ever continuous rise of social media, the shops, the TV etc means you simply can't escape it. People telling the world on Facebook how much they love their mums irks me somewhat. Please, if you are going to see your mum in person, just tell her. Call her, text her whatever. The world doesn't need to know.

I hate cancer for destroying families that never had a chance to be created, and for tearing apart those that existed before.

Kitty, this means more to me than you will know xxx

Having said all of that, I did have a lovely day cooking a roast with Rob for Mum, Col, Nanny and Granny Clarice xx

Stepping out of the shadows

So I haven’t blogged properly in a long time. The truth is it’s been a difficult ride of late. So, what’s new in JojoLand:

1. I’m no longer on the trial. Ribociclib had some seriously severe side effects which were impossible to cope with. I had already dropped down to 2 pills but it made no difference. We ended up having the “quality vs quantity discussion” but in the end it was taken out of my hands as TC made the decision. It’s supposed to be a wonder drug but with the side effects it causes it’s just not worth it.
2. I’ve been in A & E 3 times in as many weeks. First time for severe back pain, sent away with oramorph. Second time for either a reaction to the contrast I had during or a severe panic attack. My heart rate was at 130 and stayed high for hours.Third time (ie now, blogging from my hospital bed) was for suspected spinal cord compression. It’s now been confirmed it’s not that thank goodness! My MRI scan did show a “white spot” at the top of my spine though, I found out a few hours ago it’s not mets, I burst into tears when they told me. Apparently it’s just “an anomaly” that could have always been there...
3. I had a brain scan. The most noisy, claustrophobic scan ever. I’m waiting for further results on this. They have come back already as “abnormal” which is obviously shit scary. Cross fingers for me please.
4. I’m going to need a new treatment plan. Once I find out wtf is going on with point 3 above then I’ll be in a position to move forward but for now I’m stuck in limbo land.
5. I saved someone's life. I gave a man CPR and made him breathe again.

Cycle 2 - Mid-way check & cancer elsewhere....

Today we went to Guildford for the cycle 2 mid-way check. Because last week I had some really awful times, we wanted to flag these to TC to get their point of view.

I didn't blog about the awful times because I couldn't, I was physically unable to but I also mentally couldn't. I decided to take myself off zopiclone because I was frightened about the addictive nature of it. So I came off, and then I didn't sleep. I had a few days of absolutely no sleep at all. Not even half an hour. I was taking non-herbal Nytol (diphenhydramine), but it wasn't really working. I was also stressing about my return to work. Even though work have been fully supportive, just initiating an official process was pretty scary. So I was having a combination of no sleep, stress and therefore severe anxiety.

Last Friday, I was the worst I'd even been. I was shaking non-stop all day, it was really horrible, I couldn't get it under control. I managed to do a bit of work in the morning, but I was shaking so much I couldn't really control the mouse or keys. I had awful dark thoughts and couldn't process the simplest of things. Even the thought of letting the dogs in the garden was overwhelming. I felt really very mentally unwell.

Today, a week later, I feel betterer. I still have some shakes, but they are a fraction of what they were. I restarted the zopiclone on Monday and the very night I took it I actually slept. The night after I slept again, less well but still a few hours. On Thursday I got driven into the office (thank you Colin) and worked all day. I'm supposed to be doing a phased return and only doing 12 hours this week, but I've actually done about 24! I need to speak to the "people that be" about this as if I'm doing a "phased return", I need to do it properly!

Anyway, back to today's meeting. I turned up and had my bloods done. The nice nurse found a vein that behaved and took 4 phials and then I went off for my ECG. Obviously I was worried about my QTc given the past issues, but it was 440 which is within the protocol limits. We will get a call later with the blood results, and as long as they are normal, or within range, I'm good to stay on the highest cancer-kicking dose of 3 pills.

We spoke to TC and Avril about the severe anxiety and they listened carefully and wrote down everything I was saying. We discussed it all and they said that going forward they could prescribe me diazepam or lorazepam but that they didn't want to prescribe it immediately because of the addictive nature of it and they want me to try without. Hmmm. I understand why, but I simply cannot have another day like last Friday. TC said that the anxiety is also probably down to my oophorectomy and lack of hormones, which sadly they can do nothing about. So I kind of feel a bit stuck. I need to just constantly take the zopiclone and see what happens.

I think it was probably a combination of no sleep, coming off zopiclone, return to work stress, general anxiety (because wtf not?!), lack of hormones and fear. Now I'm back on the zopiclone and "official" work is actually not as scary as it seemed a week ago I think I can do this.

In other news, TC just casually dropped in to the conversation that when they removed my ovaries they analysed them. They actually had some cancerous cells on them. Fuck. Apparently it changes nothing about my diagnosis as they are now out (and thank god they are) but they have to tell me anyway just so I know. So going through that op was bloody well worth it then. Despite all the night sweats, hot flushes and hormonal changes that I now face as a small part of my daily set of challenges, the fact I had cancerous ovaries would have been yet another battle to face. Bloody hell!

QT Check and update

Last Friday we went back to Guildford for my QT prolongation check-up. I had an ECG and had a sneak peak at the numbers, one was 310 and the other was 440. The last time the magic number was 481 so both of the numbers were under that. We waited for quite a while as TC's clinic was running an hour late. We were called in and then told that my QT rhythm was back to normal. Good stuff. TC then said that I had another week off the trial drug due to how the cycle works....

4-weekly cycle:

- 1 Letrozole tablet every day

- 1 Calceos (calcium carbonate and vitamin D3) tablet every day

- 3 Ribociclib tablets for 3 weeks, then 1 week off

At the moment I'm on week 4 of the cycle which means no Ribociclib. This Friday (1st September), I'll have my end of cycle check. This includes another ECG, bloods and vitals. As long as my ECG shows my QT rhythm is fine I'll be going back on 3 ribociclib pills. To be honest this does frighten me a bit as what if it negatively affects the QT rhythm again? I also had lots of side effects when I was on the ribociclib (in addition to the QT rhythm): nausea, constipation, diarrhoea, severe anxiety, insomnia and fatigue. I'm shit scared of getting them all back again.

Since coming off the ribociclib for the fortnight, the only symptoms I've had from the above list are anxiety (but much less so), insomnia and fatigue. Obviously I've still had other side effects (hot flushes, night sweats, bone pain in various areas, thinning hair, weight loss and emotional swings), but I'm not sure if they are attributable to the cancer, menopause or letrozole. I've also had a metallic taste in my mouth but I know that is because of the zopiclone. The zopiclone is helping me sleep by the way! I'm still waking a few times a night, but nowhere near what I was. I'm nervous about becoming dependent on it though. I'll be discussing with TC on Friday as it's important I'm able to sleep without relying on pills.

At the appointment last Friday, I mentioned to TC that I'd had some bone pain, he said it was more than likely the cancer dying. Let's go with that! Last time I blogged I said I was having zometa and was worried about the potential pain. Am pleased to report that although there was some pain the day after, it was very minimal compared to last time! Having said that, it actually has increased in the past few days, especially in my sternum and lower spine. This does make me nervous that it's the cancer spreading but I have to just hope that the systemic treatment is doing its job.

I went to the dentist today as I've had some pain in the upper left side of my mouth for about two weeks. It's not constant, but it is noticeable. The dentist thoroughly examined the area and gave me an x-ray but said he could not see anything obvious causing the pain. Rather than reassuring me, this makes me catastrophise that I have bone mets in my jaw and skull. Another thing to mention to TC on Friday....

In other news, and a bloody big achievement, yesterday and today I drove myself to the office. It may sound like nothing, but until a fortnight ago I hadn't driven for a few months as I was simply unable to due to pain. It's also a massive step because I hadn't physically been in the office since before my diagnosis. It felt weirdly normal to be there. Almost like I hadn't been away. I guess because I've been working from home when I've been able to, it's not like I'm out of the loop when it comes to the actual work. I'm really proud of myself for making the step and going in. It's a step forward towards some normality and gaining some form of control over this bastard disease.

I'm on the trial!

Today I had an appointment at Guildford hospital with my trial onc TC and my research nurse Avril. Avril told me that the bloods I had done last week were all within the range for the trial protocol and then she sent me off for an ECG.

I last had an ECG back in 2012 to check my heart was okay for chemo. This time I went in to the room, took off my tshirt, the lady conducting the ECG put about 8 sticky pads on me and attached clips to each of them. She turned on a machine, it beeped and less than thirty seconds later she took the pads off and gave me my printout.

We headed back upstairs and I gave my printout to Avril. We waited for about ten minutes and then were called into a room with Avril and TC. It was then I learnt that I'm on the trial! So although it's all very unknown and therefore scary, I'm on what TC says is "the best treatment on planet earth right now" for my kind of cancer. Thank you everyone who has had their fingers crossed since June 14th!

Unfortunately the results from last weeks scans weren't back, but based on my PET scan results TC was happy to go ahead. We asked him to go through the PET results in more detail, so I now know that (in addition to the lower lumbar region that I found out about last week), the bastard is also in one vertebrae higher up and my pelvis. At least this explains the pain. It does upset me as he originally told me it hadn't spread, however, TC said these mets may have been there all along and at the start of this shitty journey, I hadn't had a PET scan. I.e. The mets would not have been picked up on just a CT and bone scan, it needed the more detailed PET scan to spot the buggers. The other thing he mentioned was a slight "something" on my lung. This frightened the hell out of me. However, he said the PET scan shows cancer through cell activity taking up glucose and this 1p sized area was not doing that, which makes it unlikely to be cancer. So scarring from a previous infection or something similar. Obviously, having been dealt blow after blow, I want to believe what he says, but it is still scary. Now I'm on the trial, I will be monitored fastidiously, so if this area does turn out to be suspicious, at least I'm having scans etc that will keep an eye on it. TC said he wasn't concerned about it, I just have to trust him.

We then had to wait for over 2 hours for my meds to be dispensed. Apparently because its trial medication, it will always take this long. Eventually we got my drug stash and had another meeting with Avril. She went through how to take them and also gave me a tick chart to ensure I mark off having taken them every day. This really satisfies my Jo-CD. Lastly she gave me a card which I have to carry at all times. It contains details of my trial and important contact numbers. If you are ever with me and we have some sort of medical emergency, please ask for my card!

We then drove home and I took my first dose!

The Operation

Rob drove me to East Surrey hospital and we arrived at 7am. Just as we were checking me in to reception, I was called by a nurse to register me. She went through various questions like allergies, got me to sign a consent form, measured me for my lovely anti-DVT stockings, took my blood pressure and got me to wee into a cup.

Then I met with the two surgeons (I had met one of them at the gynae appointment just 11 days ago) who explained the whole procedure to me. I found out the official name for my op is a bilateral salpingo-oophorectomy which is where they remove both your Fallopian tubes and ovaries. My surgery was scheduled to be laparoscopic (aka keyhole) but they did warn me that if anything went awry (bowel damage or anything unforeseen) it would need to become open surgery. The surgeons explained that they would make two cuts in my abdomen and one in my belly button. They would then put a tiny camera in one of the incisions and do the surgery through the other holes. The camera would transmit an image onto a big screen in the theatre for them to work from. They take the ovaries by almost putting them in a fishing net and then pulling them out through each incision. Then they would stitch up the holes using dissolvable stitches and that would be that. Christ.

Next stop I met the anaesthetist who explained to me how that would work, I've had two GAs before so I'm used to the procedure, but I told her I had shite veins and also I was sick both times before when I came round from the GA so she noted that and said she would make sure that I would be given an anti-emetic.

Then I was sent back to the waiting room and was told I was due in third so could expect to be waiting until about 11am. Rob and I waited for about forty minutes and then at 09:10 I was called for the op. Rob and a nurse walked me to the pre-op waiting room, Rob had to leave me here. Through tears I kissed him and he left.

I went into the pre-op ward, gave my details and I then had to change into a gown, take out my contact lenses and put my lovely stockings on. It was then that I fully burst into tears as the realisation of the imminent op hit me. The nurse there was lovely and chatted to me for a bit and then an anaesthetist came and wheeled my bed through to the anaesthetic room. There the anaesthetist that I'd met earlier put a cannula in my hand, asked me what job Rob did, what I did, about Denbies (!) and the next thing I knew I was waking up on the immediate recovery ward.

My throat hurt like anything from the tube being down there and my right arm was incredibly sore. I felt nauseous so they gave me the anti-sickness drug straight away and then little sips of water. I vaguely remember people speaking to me and one of the surgeons telling me everything had gone well. After some time passed, I have no idea how much because I was in and out of being with it, I was taken to the main recovery ward. I asked them for my glasses because not being able to see was just compounding my confusion.

On the recovery ward I felt very groggy and my stomach was rock hard. In order to access everything during the op, they fill your abdomen with air, the only way to get over this is to apparently fart as much as I can over the next few days! My arm was feeling more and more painful and then the anaesthetist came to see me. Apparently during surgery my veins weren't playing ball so they moved the cannula to my wrist, which subsequently leaked into my veins! So my poor veins are bruised inside.

The ward sister then offered me tea and a sandwich, but where my throat hurt so much, I just wanted something really soft, so they brought me a jelly. I managed the jelly and then Rob appeared! I was so happy to see him. I hadn't realised but I had actually been in surgery longer than expected, it's supposed to take about an hour but mine was more like 2. Rob had been waiting at home for the phone call to come and get me and as almost 4 hours had passed (including my time on the ward) and he'd still not had a call he just turned up. Then my Mum appeared too and I cried. I wasn't allowed to leave until I'd been to the toilet so once I'd passed urine I could go. Mum and Rob helped me get dressed, Mum brushed my hair and then I hobbled to the car.

Rob drove home very carefully, dropping Mum at CH station to get her car. He helped me up the stairs and I got in to bed. I had mashed potato and baked beans for dinner and don't really remember much more of the evening other than my arm being unbelievably sore and my stomach being rock hard.

Another step done, goodbye cancer fuel.

oh-of-uh-REK-tuh-me

Today I had a meeting with the gynaecologist to discuss my oophorectomy (pronunciation is they title of the post!) I was not feeling great anyway because of a spike in pain (presuming because of yesterday's zometa) that had me writhing around, so combined with a mentally stressful meeting it was not a fun day.

We arrived at the gynaecology waiting room to discover it was a shared waiting room with antenatal. How fucking insensitive can you get?! Dear Cancer patient who will now never be a mummy, please sit here with beaming pregnant women whilst you wait for your appointment to discuss taking your ovaries at 33, plunging you into the menopause and fucking with your life plans. Kind regards. I know it's a question of space and that the gynaecologist would look at a variety of conditions but seriously, it just made a shite day even more shite.

First steps towards the oophorectomy will be having a scan on my ovaries. Providing everything is okay with that scan, I will then be booked in for the op. It looks like everything will happen over the next few weeks. My oncologist is very keen for it to happen asap, so I think they may get involved and do some pushing. Once I've had time to digest the information they've given me I'll blog about what the op actually is and involves. It's just all a bit too much at the moment.

Edit: Have had a call and it looks like my op will be on the 17th July if it goes ahead at East Surrey. If it can be done quicker, as in next week, at Guildford, I'll have it there. I bet sod's law means I get an oophorectomy for my birthday.....

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.

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.

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!

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.

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.

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.... 

Emotional Rollercoaster

A really mixed day of emotions. Rob's grandpa sadly passed away. He's had motor neurone disease since he summer and has been speedily deteriorating ever since. Poor Rob has been ultra stressed, he's got a massive interview tomorrow for a director role at work and having to cope with his grandpa being poorly and being the rock for his family. I felt awful when I found out about grandpa as I was away in Bath with Mish. I offered to come home but he said no. I told him to smash his interview for grandpa so fingers crossed for that.

So with the lowest lows come the highest highs, I just found out my mammogram was NED. 3 years cancer-free - Yippee.

Edit: Rob absolutely kicked butt in the interview and got the job. So proud.

Unlucky for some

Friday 13th. Joy. I'm not generally supersistious, but when I get THE letter on the door mat advising me of my upcoming mammogram, of course it would bloody be on Friday 13th.

Rob couldn't come to the scan so Mish kindly came with me instead. I go to work in the morning, trying to distract myself with inane tasks, they don't help. Drive on autopilot to Mish's house, she drives me to the hospital. I walk the familiar walk to the X-ray department, check in, get the usual quizzical look from the receptionist (head tilt + curiosity + you're so young) and get directed (I don't listen, I already know the way) to the mammogram waiting area.

Another young woman is waiting there, she has the evident chemo curls, I smile at her and wonder if she is on YBCN. I get the usual impatient leg jiggle, mind wandering all over the place. Then I'm called in. I know the procedure, top off, details checked, the mammographer's cold hands, standing awkwardly at the machine, being too short so having to stand on tiptoes but stand as still as possible. The scans are done, they hurt. I look at the mammographer's face and she gives nothing away. Of course she doesn't. Then it's over. Mish gives me a hug and we leave the hospital. 

Now I wait.

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 :-)