Merry Christmas!

I am starting to feel more and more like me every day, Merry Christmas!

Good Results!

I'm very very pleased to let you know that the lesions in my brain are not mets. After two brain scans and some terrifying waiting (6 weeks!!) I received the good news. I'd been waiting for so long because the second set of scans had to go to neurologist specialist teams at St George's. They confirmed that the lesions certainly do not look like mets and that they will scan me again in 3 months to keep an eye on things. Huzzah!

Flying

The light has been switched on! The drug I was prescribed (Efexor SR/Venlafaxine) to help with my (quite frankly debilitating) hot flushes and night sweats is also helping immensely with my mood. I have been more like me now for the past 10 days. I am not scared of going out any more. I hadn't been to the cinema in about 6 months and last night I went. Simple things like going for dinner sent me into a tailspin. I was doing it but I was scared before. At the weekend and last night, I actually looked forward to going out for dinner. It felt like a massive step to be doing it but after it was done I wondered wth all the fuss had been about. I feel like me again! 

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.

Strong, Brave, Proud?

I just saw this, it actually feels like someone wrote it just for me....

Missing

I feel like I'm missing. Like the real me is lost. Like I disappeared on May 17th 2017. I keep trying to find the real Jo, the one who found joy in the simple every day things. To stop being selfish and only reflecting on myself and my symptoms. I miss her and I know other people do too. I want to be me again for myself, for Rob, for my family, for my friends, for my dogs but I feel stuck. 

I was talking to my Dad recently and he told me the phrase, "the light at the end of a tunnel is another train coming" and at the moment that's genuinely how I feel. Every appointment we have feels like another shit piece of news. 

I know I'm on "the best treatment in the world right now" for my cancer and that I should be bloody grateful as there are some many people out there who would love to have access to the drug but I'm just finding it really difficult to cope.

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!

End of Cycle 1

At the moment it feels like I'm having non-stop hospital visits. It's so draining and I just want some normality back in my (and Rob's) life.

It feels like Groundhog Day. We went to Guildford hospital, I had my bloods done again, had an ECG done again and then met with Avril. We talked through my symptoms and about how sad I feel. I just really feel low. I need to pull myself out of this pit of sadness but at the moment it just feels like I'm wading through sand. I told Avril about my tooth pain and she said I was to keep an eye on it. She also checked my last bone scan and there were no mets in my skull or jaw which is a good sign. It doesn't explain the pain though, perhaps I have been clenching my teeth in my sleep but it just feels really localised.

Anyway, after an hours' delay, we met with TC. My QT rhythm was normal so I'm back on the largest dose of ribociclib - 3 pills. I'm bloody nervous of this but I have to try and trust that they know best.

I asked TC about the dependence on zopiclone and he said not to worry, if it's helping me sleep then just to carry on with it and prescribed me another month's worth. I hate how it gives me a metal taste in my mouth though and also that I just don't fully sleep still. Everything I have read about it says that it's addictive, you shouldn't take it for more than 2-4 weeks (I've been on it for about 2 weeks now) and that you should only really take it if you can guarantee 7-8 hours sleep. I definitely am not getting that, I wake up all the time with night sweats. I'm struggling to know what to do!

We then had to wait around for 3 hours(!) for the next cycle of prescriptions to be dispensed and eventually we drove home.

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.

Cycle 1 - Halfway check

So I've just had my two week check for my first cycle on my trial drug. Rob drove me to Guildford and we met with Avril (the research nurse), she sent me off for my blood tests. I had to wait for about an hour for my bloods to be taken and once they were done we met Avril again. I was feeling really anxious and shaky, we chatted about the side effects I've been having and I was then sent off for an ECG.

Common issues from my trial drug at this point are low blood counts, rarer are issues like heart problems.

We were waiting to meet TC when Avril came to see me and told me there is an issue with my heart rhythm. Fuck. The QT something or other was too high. I had to wait for an hour and then have another ECG.

We were waiting for ages to see TC, and when we were finally called in, my second ECG also showed that the QT rate was too high. The rate had reduced since the first one, but not enough for the trial parameters or to actually be safe. Therefore they've taken me off the trial drug for a week but I still continue with letrozole. 

TC said not to worry and that at the start they will always play around until they get the dose right. Easier said than done though. I guess it makes sense, as why would a dose for me be the same dose as say a 15 stone woman... I have to go back in a week for a repeat ECG and then they will look at what to do, probably reduce my ribociclib dose down. I've just got to hope this is what happens rather than getting taken off it all together.

I also told TC and Avril about my lack of sleep. Although when I take the diphenhydramine I manage to sleep fitfully (as in I still wake multiple times a night but I manage to fall asleep again after the night sweats), it still isn't good sleep. So he's prescribed me something called zopiclone which I will take tonight:

Zopiclone boosts the effectiveness of a chemical in the brain called gamma-aminobutyric acid (GABA). GABA blocks transmission across nerves in the brain and has a calming effect. By boosting the effectiveness of GABA, zopiclone improves sleep.

Then yet more waiting until I had my adamantium which was pretty much the same as last time, apart from the fact every chair was full of different people receiving treatment. When I last had it, I had the ward to myself. I've just got to hope I don't get the horrible pain tomorrow like what happened 6 weeks ago, please please!

Where are you Sandman?

Until this shituation arrived, I never realised how much I took for granted. Walking, driving, sleeping, working, thinking. All of these and more have been taken out of my hands since treatment started. I manage to walk now most days as mercifully my pain has reduced. However, I have my adamantium again this Friday, the day after the last time I had it, the pain was awful, I was crying out, I'm crossing everything this won't be the same again. Other people have said the first was the worst so I really hope this happens for me too.

Anyway, this post is about sleep, or lack thereof. For the past week, I have had really awful sleep. As in I haven't really had any. The other night I watched the clock tick by, hour after hour with no sleep coming. Then, the night sweats arrived. These are a hideous side effect of the menopause, which are exacerbated by my letrozole. One night I had 18 in a night, they keep you awake, or if you are asleep, they wake you up. You end up "sweating" the bed. Sometimes it's a minimal sweat, sometimes it's a full on drenching, Whichever it is, it's not pleasant.

Unfortunately, because of my oestrogen positive breast cancer, I can't take HRT, so alleviating the symptoms has to come another way. I called my trial team to discuss and they recommended a few drugs, we had to wait a few days to hear back from Novartis who are the trial owners, and unfortunately I cannot take them.... Bollocks. I also cannot take any natural sleep aids (though they wouldn't help with the sweats) like herbal Nytol, Kalms or anything else similar. 

My trial team also told me I could change my letrozole brand back. When I took letrozole for a week before I took my ribociclib, I was on a brand called Dr Reddy's. When I started the trial drug I was given a new brand called Manx Healthcare. Before the trial I had very minimal night sweats, since starting the trial drug, the sweats have started. It could just be coincidence (as I'm getting further away from my oophorectomy and therefore the side effects from that could be kicking in), but they've said I can switch back, so I've done that for the past 3 doses. It will take a while for my body to get rid of the other version and may make bugger all difference, but it's worth a try.

Rob has very kindly bought me something called a Chillow. It's basically a cool mat which you put in your fridge. It is full of a gel which becomes cool and then at night you put it in your pillowcase. When you lie on it it's supposed to keep you cool. I've tried it for two nights now, it does keep you cool for a few hours, but then heats up with the warmth of your head. You can turn it over, I'm not sure how effective it is to be honest, but it's something. We also have the free-standing fan going. 

So last night my sweats reduced, thank goodness. However, I didn't sleep. At all. It was awful. Again I watched the hours tick by (this time metaphorically as I try not to look at the time on my phone), watched the sky get lighter, twisting, turning, getting hot, shivering, it's just awful. I ended up moving beds in the end. I think I slept from 5:30-6:30, that's it. Today I am beyond exhausted. We are going to try sleeping under sheets rather than the duvet. We have been sleeping under a duvet and also tried a quilt but neither are ideal. Let's hope the sheet idea works even a little.

I took a call from my trial team earlier today, I'm allowed to take diphenhydramine! This is a sleep aid which is an antihistamine that works by reducing histamine which stimulates your mind. My mum has picked me a Nytol version up today, so I will try taking one tonight and hoping that it works.

So my magic (hopefully) combination will be: 

Fan + chillow + diphenhydramine + sheet + new-old letrozole = sleep....? 

Fingers crossed! 

Not so brave

This is both physically and emotionally exhausting and some days I really struggle to cope. Today is one of those days. I cry from overwhelm, I cry at the situation I am in, I cry for the children I'll never have, I cry for the life I won't live. I cry because I feel ill. I'm not brave today.

I feel hot, I feel cold, I feel tired, I feel sick. I feel fed up. I'm sick and tired of feeling sick and tired. 

Last week I tried so hard. I had a panic attack on Sunday. It was exhausting and terrifying. I was enjoying a lunch with some friends and all of a sudden, this crushing overwhelming panic exploded in me and I had to get out. I got outside and sat on a bench crying and shaking. Rob got me in the car and I sobbed and hyperventilated the 40 minute drive home. We got home and I crashed on the sofa, it really took it out of me. Monday I still felt awful. Michelle came over in the afternoon, hugged me and I just sobbed. Full on blobby tears of emotion. 

On Tuesday I turned a corner, I worked from home and I had my counselling, the counselling really helped. We explored the fact that so much has happened to me over the past 11 weeks and that even one part of what I've been through would break some people. We also explored my panic attack, identified potential triggers and talked through both some psychological and practical ways of coping in the future. He helped and I felt good.

The rest of the week I continued to improve, I was more like me. I worked from home, really properly worked every day, I walked the dogs, I went to the cinema with Michelle, we all saw a glimmer of Jojo returning. 

But then blam, I feel shit again. It started last night with severe pain in my lower back and hips. I took ibuprofen and omeprazole and it started to go. I had a good nights' sleep, other than waking up feeling hot a few times, but when I woke up in the morning I needed the loo. I took my 5 tablets and then went to the bathroom. What followed was forty minutes of the most painful constipation ever. It reminded me of the awful constipation I had on chemo. This is gross but I've always strived to be honest in my blog.... The poop was so compacted and hard it was making me cry out in pain. Rob had taken Fagin to the vets for a check-up and I could hear Poppy crying downstairs, but I couldn't get to her. It was just stuck and sore and not going anywhere. When I finally managed, oh the relief! Once I'd been, although I felt better there I began to feel meh.

I got downstairs onto the sofa at 09:45 and I haven't moved all day. I feel dreadful, but mercifully not in pain. I feel hot and cold, so so nauseous and just not right. I don't know if these are side effects of the new pills or what, but I'm not good. All I've managed to eat and drink is a glass of water, a smoothie and an iced lolly. It's almost 8pm and I'm still on the sofa now. I feel guilty for not embracing every day I have left, but sometimes I just can't. But I'll try again tomorrow.

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!

Bone scan, new drug & a bit of a blow

Today I went to Guildford for my bone scan for the trial. First we had a chat with the trial nurse Avril who wanted to see how I was and also wanted to discuss my new hormone therapy drug letrozole. We spoke about my anxieties about eating and my nausea and also about my pain in my left hip and back.

Avril then revealed some sad news to me, the cancer is also in my spine. Fuck. It's in my lower lumbar region. I can't begin to explain how devastated this makes me. I know it won't change my treatment plan, but just knowing it's somewhere else is a complete hammer blow. To me, spine damage means more risk of paralysis so I am beyond terrified.

Then I had to go down to the nuclear medicine room for some bloods to be taken (again from my sore arm!) and have a radioactive injection for the bone scan. Both went without a hitch thank goodness and then we went back up to wait for my meeting with my trial oncologist TC.

We waited for about an hour and then had my meeting with TC. He again waxed lyrical about the wonderful ribociclib drug, gave me lots of advice on nutrition and spoke to me about my fears about the side effects. I also explained how devastated I was to receive the news about my back. He told me  that it really didn't make a difference to the plan and that I was just to control any pain with painkillers. It's hard because I'm so scared about it, but he seemed not to be concerned.

After the meeting, I went down to nuclear medicine for my bone scan. I lay on the bed and the camera came very close to my face. It took about 35 minutes. I could see some images on the screen near me. Now obviously I don't know how to interpret scans but I could see my skeleton and bits on it that were lit up. Last time I had a bone scan I saw loads of lit up areas all over my ribs, I couldn't see much at all there this time so hopefully that's a good sign and means the rads worked. I could still see the sternum shining and a bit in my shoulder area, but the new bit I couldn't see last time that I could this time was my hips and lower back. So with the news I'd just been given about my back, this makes sense. Last time I didn't know I had secondary cancer, this time I see the areas and it's just a case of being more informed.

After the scan I went back up to find Avril who gave me my prescription of letrozole. Earlier I had explained to TC how scared I was about the side effects of this drug. He said that yes I may get some SEs but that if I took the pill that afternoon, by bedtime, cancer cells would be being killed. Blimey.

We got home and I took the first pill. So a difficult and overwhelming day, but at least the systemic fight has started.

CT Scan

Today is a week since my operation, I'm recovering physically and mentally a small bit each day but it's been very tough going.

I had yet another scan today, a CT scan at East Surrey. This one is to establish baseline results for my trial. We got there for 09:30 and I was ready to drink my 600ml of water in half an hour to ready my body for the IV iodine when I was called into a side room. "Mrs Clarke you need to have a blood test,  we need to make sure your renal function is ok, it has to have been in the last 6 weeks and the last one we have for you is 7 weeks old". Me, bugger. Because I've had lymph nodes removed in my left arm and therefore am at risk of lymphoedema in that arm, it always has to be my right arm that's used for bloods, IVs, blood pressure tests etc. I.e. My sore and painful arm.

The nurse there tries to take me blood but my veins aren't playing ball. After being stabbed in my poor sore arm, I go to phlebotomy where they get the bloods, it's sodding painful though. We then head back to the scanning waiting area and wait for a while until the bloods come back. Eventually they do, all ok and I can start drinking the water.

I'm then called into the CT scanning room, I know the drill, asked lots of questions, I try not to scoff/cry when they ask me if there's a possibility I could be pregnant.... I'm asked to lie on the bed and the team leave. The scanner whirs around me, takes a few images and then the team come back in to the room and cannulate my poor arm. The iodine dye is injected and I feel like I've wet myself, totally normal apparently:

When the iodinated contrast is injected, most people will get a strange metallic taste in the mouth and feel a warm sensation through the body. This warm sensation may concentrate around the groin or buttock region and can feel like you may have wet yourself, even though you have not. Do not be concerned if this happens, it is a common sensation and usually goes away within a couple of minutes.

I then have a number of images taken and have to hold my breath at certain points. After about 10 minutes it's finished. They remove the cannula from my poor pin cushion resembling arm and I can go home. I have two days' respite now and then on Thursday I have more scanning and tests. Tomorrow and Wednesday I need to try and recuperate some more.

Post-Op Recovery

Woke up this morning feeling very weird and spaced out. My arm was super sore, red, hot, swollen and I couldn't bend my fingers. I spent most of the day with ice blocks wrapped around it but it wasn't helping. Because of the building work being done on the house, I spent the whole day in the bedroom. Eventually when I emerged downstairs at 17:30, I asked Rob to call the GP for me. My arm just didn't feel right. We ended up getting a very last minute appointment and as a result I now have a weeks' worth of antibiotics (flucloxacillin) as the GP agreed we should do something about it just in case.

My poor arm!

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.

Ovary Scan

Today I had a phone call from East Surrey hospital saying they had a cancellation and could I go in that afternoon for the scan on my ovaries. Not an ideal way to spend a Saturday afternoon but hey, if it means things get moving quicker then let's get on with it.

We arrived early and as there was no queue I was seen straight away. It was a fairly "invasive" scan but was over in under 10 minutes. The lady doing the scan very kindly told me then and there that everything looked normal meaning I didn't have to wait for any results. It's definitely the little things like this lady's thoughtfulness in telling me straight away that make this journey just a tiny bit easier.

To add a bit more polish to the shiny news, the car park ticket didn't charge us for parking either - small wins!

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.....

Adamantium

Today I had a check-up with my very lovely "trial" oncologist at Guildford. He's so kind and patient and really takes the time to explain things and reassure me. He seemed surprised I hadn't had my oophorectomy yet, but I reminded him I only finished rads a week ago and he said I should try and get it done asap. I have a meeting with gynaecology tomorrow so hopefully I'll have a date then.

I then asked him about the PET scan I had back on 17th June, my first piece of good news for a while, there has been no progression! I was terrified that the bastard had been silently spreading, invading my organs, so this is a very, very good thing.

Then I was told I would be having my first zometa that afternoon. Zometa (aka Zoledronic Acid) is going to be my adamantium. It's a bone strengthening drug which you receive by an IV which takes 15 minutes. I'll be having it every 6 weeks. The nurse walked me up to Chilworth ward and I have to admit my resolve crumbled. Although yes I've had my rads marathon, somehow, even though I know this drug is a good thing, having an IV drip makes everything real again. I'm not in denial about this whole shit sandwich of a situation, but I am trying to find my new normal and having an IV is like cancer smacking you in the face and shouting at you.

Chilworth Ward & Rob's knee!

Mum, Rob and I waited in that boiling room for about half an hour before my notes arrived and then I had a cannula put in and the drip, drip, drip of the drug began.

Adamantium time

When I heard the familiar "pfft, click, pfft, click" of the machine I fully burst into tears. That noise just took me right back to my chemo days in 2012. Although the oncologist had told me this was a low toxicity drug, it doesn't come without side effects which frighten me. Osteonecrosis of the jaw is probably the most terrifying one. Thankfully I went to the dentists yesterday and they said my teeth looked perfect so I am hoping this won't happen to me. The 15 minutes seemed to last for hours but eventually it was done and (armed with some daily calcium tablets to take) I was free. 

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.