First scan results are in

It's taken me a while to get this latest update written, the week of my scan results was pretty hectic and then I went away on holiday for a few days with my family.  So far it's good news, the chemo seems to be working, the timing is perfect because my side effects have been getting a bit worse recently. It's so nice to know that it's worth going through all the crap for a positive result.

I had my CT scan a couple of weeks ago now on 31st July and was due to get the results the following Tuesday.  Unfortunately the results weren't back in time for my appointment with oncology on the Tuesday so I had to wait a bit longer, a bit of an anticlimax! The registrar (Dr B) said that he would call me as soon as he got the results and let me know.  He called me the following afternoon to tell me that firstly the scan showed shrinkage in the cancer in my lymph nodes and secondly it showed that I had a blood clot near my liver which had restricted the flow of the iodine contrast dye injection during the scan and they couldn't get a good picture. Although he did stress that there was nothing on the scan to worry about at the moment, what they could see of my liver was fine.  Although Dr B wasn't worried about the blood clot posing a threat to my health, he still wanted me to come in to the hospital as soon as possible for some blood tests and to be given a course of blood thinning injections.

So the chemo is carrying on as normal, every week as long as my white blood count is high enough,. I've done 10 treatments so far, I think I could end up having 18 in total, so I'm more than half way through.  I do my injections at home for the blood thinning and am waiting to ask more questions about treatment plans and liver scans at my oncology clinic appointment next week.

My oncologist was right!

I have had 4 weekly treatments of chemo so far and I'm happy to report that my Oncologist was right, it's not been too bad! Phew.  I was scared about the level of fatigue, and how I would cope going back to work and achieving a balance where I'm still not too tired to see friends for dinner or do a trip to the supermarket.  I'm relieved I've not had any problems so far,  I'm more tired than normal but it's really manageable, oh and I get nosebleeds and a sore throat, but thats quite minor on the side effects scale.  Life goes on wonderfully normally at the moment, except for the weekly trips to the hospital.

When I had chemo before for my primary diagnosis, the dose was so strong that I used to leave hospital with big bags of drugs to combat all the side effecta, I had 3 types of anti sickness tablets, antibiotics to combat any possible infection, injections to boost my white blood cell count, laxatives to counteract the anti sickness medication that bungs you up.  This time is very different, I only have my indigestion tablets to take in the morning and the rest of the week no drugs.  It really helps to keep my brain clear and I feel like less of a cancer patient because of it.

There is one big side effect that's starting to happen...my hair is falling out, not as fast as last time but it's getting more and more each day.  It's held onto my head with a combination of hairspray and hope at the moment.  I'm going away with my boyfriend this weekend and I'm desperately hoping that it stays put for another couple of days.  Most of my morning routine is spent collecting up the hair....off my pillow, from the plug hole, out of the brush, from the bedroom floor.  I am prepared with a lovely new wig for when the time comes to say goodbye to my real hair.  I've gone all out this time and got an expensive one, this is when it seems perverse to appreciate having cancer for a second time, I know all the tricks, the best wig shops to go to and I don't feel like a rabbit in the headlights this time. So very soon I'll be sporting my super wig, she's called 'Cody' (not my choice, this is what it says on the tag).

As far as success of the treatment goes, I should be getting a CT scan around week 12 (mid to end August) this will monitor the effect the chemo and Avastin have had on my lymph nodes and liver.  In the interim my Oncologist has said that the weekly blood tests I have could also show an indication of the success of the treatment, they monitor my liver function and calcium levels in the blood so will see if anything major is going wrong with my liver and bone mets.

The photo below is of the hanging basket my Dad bought me, he's jet washed my patio, bought me new flowers and donated a table and chairs.  It's the practical things he can do because he can't control what's happening to me health wise, and it's so lovely to sit out in the summer evenings and have my dinner Al fresco.  It's the little things that count when you're going through crap like this, we both love fuschias and I sent this photo yesterday to prove that I had kept them alive.

Then some more of me having a lovely time with my best friends and family (hair still clinging on).

Diagnosis #2 cancer comes back

I've wanted to write another update for days now but I've not been able to find the right words. So I've decided there are no right words because all the words to describe my latest diagnosis are wrong and scary but most of all just bloody depressing.  This is my problem, I want people that care about me to know what's happening but I don't want anyone to be sad for me, I'm not upset, I don't cry and I don't want anyone else to either.

I now have secondary breast cancer, otherwise called metastatic breast cancer or stage IV cancer.  It's when cancer cells from the original breast tumour spread around the body to other areas, I have cancer cells in the lymph nodes of my chest and neck and also in my liver.  This type of cancer is incurable.  The terminology in the cancer world is very specific, I'm not 'terminally ill', the way it is viewed at this point is similar to having a chronic illness where my condition can be stabilised or controlled for some time through medical treatment. Nobody can predict right now the amount of time I'll have, it depends on how well I respond to the wonderful drugs the NHS have on offer.

Since my last post I have now met with my lovely new oncologist and have a treatment plan.  First step is more chemo, I'll be having weekly doses of Paclitaxel via IV infusion, starting on Tuesday.  It's a lower dose than the chemo I had before and it's given on a weekly basis, I've been told that the side effects should be minimal and my immunity to infection won't be as low as when I had chemo before.  I'm hoping to be able to continue working, just on reduced hours and more importantly keep seeing all my friends and family as much as I possibly can.  I'm keeping my fingers crossed that I'll be well enough to make it to Latitude Festival in July.

I'm taking part in a clinical trial for this next round of treatment, it's to test a new targeted therapy drug along with the chemo. There's still a 50/50 chance I will get the placebo instead of the real drug but it means my response to treatment is going to be closely monitored over the next few months, more so than if I wasn't on the trial.  My Oncologist is also sending me for more gene testing, as I'm young with triple negative breast cancer it's likely to be a genetic fault that has caused me to be susceptible but not one of the main BRCA genes I've already been tested for.

So that's the sciencey bit over with.  Coming to terms with my new situation has been surreal, I always thought I would lose control if this ever happened and have to live out the rest of my days high on Valium.  It's all felt weirdly calm and after a week spent with my family I went back to work. I have just been carrying on as normal, pretending like nothing happened.  At the moment there are two things I'm very grateful for: going to the doctors as soon as I found the lump above my collarbone and then delaying getting my results until after my trip to Paris.  I had an amazing time, even cancer couldn't ruin it.

I'm sorry for the downbeat nature of this blog, I had an overwhelming desire to spell out the facts first  and then I'll follow up with the most sickeningly, life affirming blogs you've ever read.  I promise! 

Me and my wonderful friends in Paris, nearly 20 years of good times and lots more to come ! 

Not the news I was hoping for...

It wasn't good news at the hospital today.  After all the tests I've had, my surgeon confirmed that there is evidence of cancer in my lymph nodes along with 'areas of concern' now showing in my liver.

I have an appointment with Oncology on Wednesday to discuss my new treatment plan.  I'm assuming this will be more chemo.  There's not much else to report at the moment, I'm just dealing with it one step at a time. I went to the hospital with my parents so I had all the support I could have wished for today, they have been amazing  I'm now at their house being spoilt and in a lovely bubble of denial, drinking tea and watching Pointless.

At the moment it's all so surreal, as if someone might suddenly tell me it was all a big mistake.  Wouldn't that be lovely?

A funny couple of weeks

It's been a funny couple of weeks, I've spent too much time in hospitals, drank far too much alcohol and tried to go to more spin classes.  A ridiculous combination of feeling very close to my own fragile mortality, but at the same time, so very, very alive.

Last week I was at the hospital for a CT scan to see if the cancer has come back, or to phrase it more positively, to MAKE SURE the cancer hasn't come back.  A few weeks ago I found a lump in my neck, just above the collarbone, it was big enough for me to break into a cold sweat and I called the Breast Clinic straight away to find out what to do.  I booked a GP appointment for the next day and took time out of work to go and show the GP my new lump.  The young doctor agreed that yes, I did have a lump, and he was going to make an urgent referral back to my cancer team to get the relevant tests done.  Then I burst into tears, I think he had said something like 'recurrence' and it tipped me over the edge.  I haven't cried in front of a Doctor for a very long time. During those few minutes sat in that little room I sunk to the very worst places I let my imagination go.  I imagined that the cancer had now spread to all my lymph nodes, it would be incurable and I'd have to have more chemo.  I was so embarrassed, I don't think the Doctor knew what to do, I was telling him I was OK but at the same time wiping tears from my face.  I quickly realised that there was actually no actual bad news yet and it's likely to turn out to be something completely normal. And with that, I dried my eyes on the tissue he gave me, pulled myself together, and drove back to work.

Since that appointment I have had a couple of ultrasounds on my neck, a FNA (fine needle aspiration) to take some cells from my lymph node and finally a CT scan to make doubly sure.  On top of this I had to go for my first annual mammogram on my 'good' boob.

I seem to have an effective way of packaging up fear, I don't know how it happens, until I know something for certain about cancer I don't worry about it.  I don't try to find out what other things it might be, I don't google anything, I don't do any research. Maybe because I'm lazy, but I find it helps to just wrap it up and put it away until there's a solid tangible reason to go back to it.  I will always know it's there lurking in the background but I don't let it affect my quality of life, I certainly don't lose any sleep thinking about what ifs.

Thankfully, the lump has significantly reduced in size since I first found it, it's hardly detectable now, although it's gone up and down in size a few times.  This I find reassuring, I can rationalise that it's one of my lymph nodes swelling up as it tries to fight an infection.

At the same time I have been trying to get fit, I joined up at my old gym last month which was quite a landmark for me, I haven't been since the day before I was diagnosed almost 18 months ago.  The first time I swam 30 lengths in the pool I felt a bit emotional, when your body has been through so much it's amazing to be back in control, feeling strong.  So I've stepped it up a gear and started going to spin class, it's tough but I'm the only one in there smiling because it makes me feel so alive, my heart is pumping, doing exactly what it should be doing.

It's not all been hard work at the gym though, I had quite a monumental night out on Saturday with the awesome girls I have met through Younger Breast Cancer Network (YBCN).  We drank a lot of cocktails and stayed out far too late.  This weekend I'm going to Paris with 6 of my very best friends, it's a weekend away to celebrate me finishing treatment and to make some more amazing memories together.  I couldn't have got through the past 18 months without them.

So I've postponed my results appointment with my surgeon until after my trip to Paris, once you know something you can't un-know it.  Although I'm feeling 99% positive about the results there's always the 1% of me that remembers the very positive girl who turned up to her first results appointment to be told she had cancer...

I'll keep you posted!!  Photos below of me modelling Glenfield Hospital's finest range of hospital gowns, I think surgical blue might suit me.

The one where I feel ok about losing a boob...

When I started writing this blog I knew that I wanted to portray my story in a positive way, I have made it through the worst year of my life and I've coped so much better than I ever imagined.  I know I've moaned a bit about chemo in my previous posts but even that was so much easier than I expected, I felt poorly for about a week after each dose but I still had two weeks of feeling pretty normal and I could get out and about, see my friends, go out for dinner, all the normal things.  My mastectomy operation posed a new set of challenges and I wasn't sure how I was going to deal with them.  I knew right from the start of treatment that I would need to have a mastectomy, as I was having my chemotherapy before surgery I had about 5 months to get my head around it.  I felt sad about it but that was about all I felt, I had a lot of time to think about my emotions and how I might feel after the operation, but even then I still didn't feel anything strongly. Some people feel angry at their body for letting them down, some people can't touch or look at their boob, but I never felt like this, I just felt a bit sorry for it, as if the cells in it had just got a bit confused.  I didn't feel an overwhelming urge to have the cancer cut out of me, it all felt too abstract to get my head around, that this lump was trying to kill me.

During chemo my Oncologist was so happy with the way my lump was responding (getting smaller) he sent me back to my surgeon for a consultation to see if she wanted to operate sooner than planned. She was happy to let me finish all my chemo first before operating, but it gave me a chance to get a date agreed for my operation: 22nd April 2014.  I was to have a mastectomy of my right breast, all my lymph nodes removed in my right armpit and an expander implant inserted into my chest, on the right side where the breast used to be. The expander implant was my surgeon's suggestion, this meant that I'd have an empty implant inserted and then once my scar had healed the implant would be slowly filled up with saline to help my skin expand and give me something that looked like a normal breast.  The expander implant can only be kept in as a temporary measure so the ultimate aim is the stretch your skin sufficiently to enable the expander to be replaced with a silicone implant at some stage if that's the recon option I choose.

I was fine with all of this, I was happy to have all the surgery I needed to give me the best chance of recovery and the biggest lesson I have learnt through all my treatment is to trust my instincts, how I felt before my operation was exactly how I felt after, nothing had changed, bits of my body had been removed and it looked different but it didn't make me feel any different.

The night before my operation I was scared, I was going to be under general anaesthetic for about four hours, I've never had an operation before, this frightened me.  I was scared of not waking up, or waking up and feeling so poorly or in pain that I wished I was still out of it.  My Mum (as usual) was a brilliant support, she has had several major surgeries in recent years and she reassured me that I would be OK.  I think I just needed to get it off my chest that even though I appeared to be brave, I was actually pretty scared. We were at the hospital the next day at 7am, I hadn't even been awake before 7am in weeks, let alone up and dressed!  That was probably the worst thing about Tuesday 22nd April, having to get up at the crack of dawn because the rest of the day could not have gone any better.  The first lady on the list for surgery hadn't turned up that day as she was poorly, I was second on the list so it was all systems go to get me ready for theatre.

First they gave me those those horrible surgical stockings to wear, then a Doctor came round to draw some lines on my chest to make sure the surgeon chopped the right boob off.  This is where my Mum got upset, she found it hard to watch me getting marked up for surgery, I am young and healthy(ish) and it broke her heart to think that my body was never going to be the same again.  So they whisked me off at about 8.30am, my Mum was crying when I went but I was hard as nails, not a tear in sight, this took some determination but I'm very proud to say that I didn't cry.  I thought it would be silly to cry about having life saving surgery, I'd got it out of my system the night before.  It would have made my Mum feel worse too, knowing I was on my own getting prepped for the op, sobbing my eyes out.  The anaesthetist had 2 big syringes to inject into me ( I was very used to big syringes by now and I watch every needle that goes into my body with enthusiastic curiosity) he told me the first one was a painkiller that might make me feel a bit drunk...he was right.  Then I asked what the next one was, 'anaesthetic' he replied, that was the last thing I remember for four hours...

Until I woke up in recovery.  The memories of everything post op are very vivid and very funny... I was obviously high as a kite on painkillers. I could hear everything going on around me perfectly but I was still so groggy I couldn't open my eyes or speak.  I was wheeled back onto the ward and my parents came to the side of my bed, I could hear them, my Mum was holding my hand, I still couldn't speak or open my eyes so I just smiled, as wide as I could to let them know I was OK.  In my drugged up state I knew that this was my way of communicating silently to them not to worry, but I just looked like an idiot, it didn't help that they had put my headscarf back on after theatre and it was a bit wonky.  My Mum said I looked very funny! I didn't feel sick, I wasn't in any pain at all and I just remember thinking how lovely and comfortable the bed was.  I never asked what it was they gave me but it felt lovely.  As soon as I was awake enough I wanted to see what my boob looked like, I looked down the front of my hospital gown and was amazed, I was very unprepared for how normal my chest looked, it was as if they had taken all the stuffing out of my boob, cut the nipple off and sewn it up again. All the skin was still there, I didn't have a big crater-like wound on my chest.  I got my Mum to have a peep down the gown to see, my Dad couldn't be persuaded to look...

My surgeon came to see me, she said the operation had gone very well and that I could go home that evening if I wanted to. I had to fulfil some criteria before I was allowed to contemplate going home, I had to get up out of bed to walk to the toilet and eat something a bit more substantial than a biscuit.  I never believed that it would be this easy, major surgery in the morning and skipping out of the hospital in the evening, except that I had to work out how to manage at home with a drain in.  I didn't notice the drain until later on in the afternoon, the tube was poking out of a hole under my armpit, I had never even seen a drain before and now I had one, it was a bit horrible to look at, draining off the extra blood and fluid my body still making for the space where my boob used to be.  I had to take it home from the hospital in a special fabric bag that was purpose-made for carrying drains, I even had a choice, checks or stripes? (I went for stripes). The drain stayed in for four days until I went back to the hospital to have it removed. Very slightly annoying trying to get dressed, wash, go to the toilet with a tube poking out your armpit.  For once I was so grateful to not have any hair to wash.

I've just realised that I've written this whole post about my mastectomy without a single mention of pain, that's because I didn't suffer any pain, just a weird dull ache.  After I came back from theatre the nurses came round to check my pain levels, I didn't have any pain, I kept asking if this was right, was it about to start? Not only had I just had a mastectomy, I also had all of the lymph nodes in my armpit removed, all 13 of them, so there must have been a bit of rooting around in there too but nothing really hurt.

I couldn't wait for the dressings to come off so I could see what my scar looked like, I'm not a squeamish type of person, I have a few scars already so my new one was going to be in good company.  I had read up on line about different women's reactions to having surgery for breast cancer, I couldn't relate to it at all, I couldn't imagine feeling 'mutilated' and not being able to look in the mirror at the changes to my body.  It never bothered me remotely, I was fascinated with the whole process, it saved my life and I still looked like I had a real boob.  I was honestly amazed at what my surgeon had done for me, I was happy to show anyone who expressed a passing interest.

I went back to the surgeon for my results two weeks later, they sent everything they removed to the lab for testing after the operation and they found that the tumour had shrunk from 5cm to 2cm, although there were still active cancer cells in it, of the 13 lymph nodes they removed only one showed evidence of disease and there was no lympho-vascular invasion, meaning that cancer cells had not penetrated the blood vessels in my breast.  Good news all round!! Phew, the 6 rounds of chemo were worth it in the end.

My first chemo

Originally I intended to write one post about having chemo, I've had to re-think this, I started writing and I just couldn't stop! I found it hard to condense my ramblings about 18 weeks of weirdness that are quite impossible to describe. Having chemo is like a strange fog descending on you that affects your mind as much as your body, it takes some serious determination to go back for it 6 times, that 6th one was so much more of a mental challenge of endurance than anything physical.

A lot of women with breast cancer have surgery as the first part of their treatment, not me, I was different. My cancer was an aggressive grade 3 tumour and it was discovered that it had already spread to at least one of the lymph nodes in my armpit.  Because the cancer cells were on the move around my body already the best way to improve my chances of being cancer free was to blast my whole body with chemo to kill any cancer cells, anywhere.  Also, my surgeon wanted to shrink my lump before I had surgery, there could have been a chance I might not need a mastectomy.

My first chemo was scheduled for Thursday 5th December, just 3 weeks after I had been diagnosed. Whenever I tried to imagine what chemo might be like, all I could envisage were scenes off the TV or things I had seen in films where people got really, really sick! I was so scared that this would happen to me. I thought I would be spending the next 18 weeks too tired to get out of bed, throwing up all the time.  My surgeon had been very reassuring about the effects of chemo when I was first diagnosed, she said some people don't suffer too badly from side effects and they actually carry on going to work during their treatment, as this was from someone in the medical profession I tended to believe her.  My Gran had chemo when she had non-hodgkins lymphoma about 10 years ago and she was never sick.

I always find myself wanting to write 'I don't know how I did it?' and looking back now I think I just went into autopilot, I had no choice but to have chemo, no going back, no running away, what was the alternative? The phrase I used at the time was that I just had to 'suck it up' and that's how I approached the inevitable, with grim determination.  Its strange to admit that I had a weird curiosity about how it was going to affect me, when would my hair fall out? What would I look like bald? I spent the 3 weeks before chemo in a hospital whirlwind, having scans and tests, but still working full time, only having time off for appointments, I even went into work the morning before my chemo, I was bonkers.  I just wanted that final bit of my normal independent life for as long as possible until I had to put it all on pause to go through treatment.

The actual process of receiving chemo is surreal, having something so poisonous put into your body shouldn't be so relaxed and normal.  It's as if you expect a more dramatic fanfare for the hideousness that's about to happen, an explosion, an alarm, an electric shock... The reality is such a non-event.  You are handed a cocktail of anti sickness pills to swallow whilst you sit in a comfortable chair with a lovely nurse chatting to you. All the time she is slowly and gently injecting syringe after syringe of toxic chemicals into the canula on your hand. You look round the room and everyone else is the same (albeit a lot older than me!) sitting there patiently waiting for the drugs to go in, no drama, just chatting with a friend or reading a book.

After about an hour, the nurse takes the canula out and you're allowed to go home with just a plaster on your hand and a bag of anti sickness drugs to show for it.  You feel pretty much the same as when you walked in. I had a made a chemo plan with my parents, I was going to stay at their house whilst recovering from each chemo so that I could completely relax and concentrate on getting better. So after my first chemo we had to drive back to Solihull, a 45 minute journey, I sat in the back of the car with Mum clutching a bottle of water and a plastic bag in case I was sick.  Before I had left the hospital my chemo nurse scared me by saying that if I was going to suffer from sickness it could come on quickly, so I was prepared to put the bag into action at any second.

It never happened, my worst nightmare never actually materialised.  Minutes passed, and then hours
passed and I still felt fine.  I know I am extremely lucky to have tolerated the chemo this well for the
first few days.  I took my anti sickness meds religiously and after 6 days I thought I had got away lightly with the dreaded side effects. Sadly, I was wrong, almost one week after chemo I woke up in the middle of the night , sweating and shivering, with a temperature over 38 degrees.  This is what the Oncologist warns you about, this is what the Chemo Information session warns you about, this is why you are given a 24 hour emergency helpline number and a red card to flash in every A&E department to ensure you get treatment immediately.  A high temperature is a sign of infection, chemo destroys your natural immune system so you need to go to hospital to be given intra-vinous antibiotics.  Damn! I thought I had got away with it, this had just got a lot more serious, up until now I hadn't felt like a cancer patient, I hadn't even lost my hair yet, but now my sister was driving me to A&E in the middle of the night.  It was the beginning of the longest six days of my life, I had an allergic reaction to the antibiotics they gave me, then another temperature spike, then my white blood cells went too low for them to allow me home. I was given a private room at the hospital as I had to be protected from infection but there was no phone signal, no wifi, I was so bored, and lonely and miserable.

A few days after I was discharged, my hair started falling out.  When I returned to the hospital for my second chemo I felt like I had earned my place in that waiting room, there were no strange stares from other people trying to work out who the patient was, it was bloody obvious now.  The photo below is me having my second chemo, on Boxing Day 2013, Merry Flippin' Christmas!!!