Sorry I've been quiet

For the past month I have been very poorly.  I was admitted to hospital in Leicester on 15th September with abdominal pains and a a high temperature. After a course of antibiotics I was discharged after a week and allowed to go home.  Once at home my abdomen started to swell up with fluid, so I went back into hospital and was admitted again on Friday 25th to have an abdominal drain.  This gave me some relief and after this I was discharged again on Tuesday 29th.  Again at home I was ok for a few days but then the abdominal drain had not been as effective as the doctors had hoped so I ended back in hospital with more swelling on 6th October and now the only route was to get a permanent drain fitted via ultrasound which I had done on 7th October.  Although over the weekend I got very poorly with pain again and was taken to the local hospital in Birmingham by ambulance on Sunday morning. 

During all this time I have been in a lot of pain and discomfort, going in and out of hospital, trying different combinations of very strong painkillers along with all my other medications.  I've not been able to update enough people with my situation as its been such a roller coaster.  One day I've felt ok, the next day I've felt very poorly.  Just five weeks ago I was coping ok, still at work, independent, except for the side effects of my chemo I was not suffering any other symptoms, this change in my health has all happened very quickly.  The problems are all due to the fact that the cancer is in my liver which is a major organ and therefore pretty life threatening. 

Nobody ever discussed a prognosis with me when I was diagnosed with incurable cancer, I didn't want to know.  I already knew that my life expectancy was all due to the success of different treatments that were available. I had a vague idea that worst case scenario was probably six months but best case scenario could be a couple of years.  

I am now still in hospital in Birmingham and they have managed to keep me very comfortable, control my pain and manage my fluid levels.  I will be moving to the Marie Curie Hospice soon in Solihull where they will continue to care for me. 

My treatment for cancer is now being stopped as I am too poorly to tolerate chemo, the Doctor told me yesterday, he was very open and honest, which is what I wanted, I now have weeks left to live.  I haven't eaten properly for a month, I've lost a lot of weight, as long as I can try to keep my strength up this will improve my chances.

I would love to have visitors if anyone wants to come and see me, my younger sister is doing a great job of managing my visitor schedule.  Please get in touch with her via Facebook.  She is also running the Birmingham Half Marathon this weekend (along with my older sister) in aid of cancer research.  You can find the link to their just giving page on my Facebook. 

Bye for now! Thanks for reading.

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.

Latitude - I almost didn't make it

Last weekend was quite a roller coaster but it had a happy ending with me having an brilliant time at Latitude Festival. The drama started at 5.30am on Thursday morning (the day before I was due to go) when I woke up feeling hot, I took my temperature and it was 38.4! Not good, so I took my duvet off, opened the window and tried to cool down, I took my temperature again after about 30 minutes, it was still above 38.  First rule of chemo club is high temperature = bad news, call the emergency number straight away, follow their instructions.  Shit, all I could think about was having to miss Latitude, it had been booked for months before I was re-diagnosed and I was determined to go. I waited until 7am and woke up my older sister who was staying in my spare room.  I felt fine, just hot, when I had a high temperature on chemo before I felt awful, I felt sick and couldn't stop shivering.  This was different, not nearly as bad, but as I had a temperature it could be a sign of an infection in my body, I have to be super vigilant about this.  The lovely nurse I spoke to on the phone said I should come into the assessment unit, get my blood tested and to pack an overnight bag just in case.... Eeeek!

I arrived at the LRI Osborne assessment unit at 8am, for what turned out to be a very long day.  The nurses were amazing, explained everything that was happening, they took a load of blood, pumped me full of antibiotics (the type I'm not allergic to, having chemo twice does have its upsides!) and I waited for the results to come back.  It took a few hours, but finally good news...no sign of infection, or anything wrong with my blood tests, I was free to have my chemo! I have never been so happy to be told this before, I nearly skipped round to the chemo unit.

My chemo didn't quite go to plan though, the chemo drug I'm having every week can cause my body to have an allergic reaction, this happened before on my third week, and on Thursday it happened again.  When it happens, I get a really tight chest, short of breath and my face goes bright red.  I have to push the emergency button for a nurse and they stop the chemo drugs going in for a bit, I get injected with some more drugs to counteract the reaction, and then the nurses start the chemo again at a slower rate. It's all hands on deck when someone gets an allergic reaction on the chemo suite, they bring over the oxygen tank and everything.  Luckily it only takes a few minutes to make me feel OK again and then I go back to reading Grazia, or fall asleep in the chair.  It can be bit scary when you are short of breath but I know what's happening now so it doesn't bother me too much, I'm just determined to get to all of the drugs in and not have my chemo delayed.

I had so many needles and drugs that day I was high as a kite, 1 blood test, 2 canulas, antibiotics, piriton, ranitidine, steroids, avastin, paclitaxel, hydrocortisone, more steroids and more piriton. Nine hours at the hospital in total, my sister waited patiently through all of it armed with snacks and didn't mind me nodding off for hours in the chair.  

When I woke up on Friday morning I felt fine, so I went to Latitude.  Yipppeeee.

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).

Treatment starts

I started writing this yesterday when I was very content, laying in bed at my parents' house watching TV, not because I felt ill, but because I'm just plain lazy sometimes. Once I found out I had to have chemo again my Dad sorted out the Sky multi-room for me and there I was enjoying all kinds of trash.

I had my first chemo on Friday and still feel perfectly well.  Overall it's been a good week, the sun has been shining, I've spent some very happy times with my family.  It's now a month on from my diagnosis and things aren't half as bad as I thought they would be.

Last week started with a change of plan to my treatment.  I had an appointment with my oncologist on Tuesday, she had some more information and as a result had taken some decisions on my behalf.  The bone scan I had as part of the screening for the clinical trial had picked up some small areas on my spine and skull that showed cancer, she made a point of telling me that this is nothing to worry about and is very common, she reassured me that the chemo would get rid of any cancer in my bones.  Because of the new discovery, I would be required to have more scans to my head to get a baseline of my cancer for the trial. This would mean a further delay to starting treatment, it isn't a good idea to keep delaying so she has been decided to take me off the trial and give me the standard drug alongside the chemo.

It is disappointing to not be part of the clinical trial as it would have meant more regular monitoring of my progress for the next few months but I was relieved to finally start my chemo on Friday and have the extra information about my bone scan.  Although I do tend to live in a semi informed bubble a lot of the time, I have to admit that knowledge is power.  

It was a long day on Friday, they gave me my two drugs separately through a canula in my hand.   I had Avastin (Bevacuzimab) first which took an hour and a half.  This is a targeted treatment that aims to prevent cancer cells developing a new blood supply. Then I had some pre-meds for my chemo (steroids, antihistamine and other stuff) and a further hour waiting for the Paclitaxel chemo to go in.  I was in a daze by the end of the day because the antihistamine made me very drowsy but sitting in a comfy chair all afternoon with magazines to read wasn't really too difficult.

So that's the deal, chemo will be every week from now on and providing I still feel alright I will keep carrying on as normally as I possibly can.

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.

A lot to think about

This post has been taking me a long time to write, I wasn't sure what I wanted to write about, I wanted to give an update on new important events happening in my post cancer world (the fun never stops) and also how I'm coping with life after treatment.  This is the problem, moving on is such a confusing time, which is why it's taken me so long to write about it. I don't know where to start.  I'll start with the update and then I'll try to explain the confusion.

UPDATE

As I'm under 40 and my breast cancer was a type known as 'triple negative' I qualified for genetic testing.  I went to the Genetics department in November for a session with Penny, the lovely genetic counseller and I agreed for them to take some blood which was sent off for testing.  In January I got the results and found out that my breast cancer wasn't as a result of a faulty BRCA gene.  I am relieved that I now don't have to consider having my 'good' boob chopped off and eventually my ovaries removed.  I'm also pleased that the rest of my family don't have to get tested too.  So my 'early onset' breast cancer remains unexplained for now, shitty odds I guess??  The hospital have asked me to take part in a further genetic research project as my Grandmother on my Mum's side had colon cancer at a young age and they think that there could be some significance in this.

I've also been to see my surgeon recently to discuss options for permanent reconstruction. My expander implant is only a temporary solution, although I have become very attached to it.  I've almost made a decision , I think I'm going to opt for a procedure that uses muscle and tissue from my back to make me a super new boob.  However, it will mean another long operation, another stay in hospital, another month of not driving. More scars, more drains and maybe a catheter if I'm lucky!  Having been back at work for almost a year now I'll certainly be glad of the enforced bed-rest, I still have series 5 of Breaking Bad to get through.  I know it will be some short term pain for long term gain, but I'm still nervous about it.  It will be at the same hospital and on the same ward where I was for my mastectomy.  I'll be certain to do a nice gory blog post, with lots of pictures of horrible drains and stuff...

CONFUSION (warning...I talk about people dying from cancer, me included)

A lot has been going on in my little brain recently (the bit of my brain that's not thinking about nail varnish and Royal Blood that is....). My online cancer group has lost some members in the past couple of weeks to this horrible disease. One in particular has been difficult to deal with, as it was a lovely girl called Claire who I met at a YBCN lunch in Leicester back in September.  She was only diagnosed in April last year and already she's gone, at the age of 30 without even having a chance at getting her life back after treatment or a reprieve from the horribleness of chemo. News like this gets me locked in a spiral of guilt, I feel extremely sad that someone has been lost to cancer, I feel scared because I know this could very well be me at some point, I worry about dying, I feel guilty for being selfish and thinking about my own prognosis when I'm fit and well....this goes on repeat...and repeat.

Everyone in my position who is successfully treated for a primary cancer is painfully aware that cancer is a horrible disease that likes to make a comeback.  I know my percentage chances of surviving 5 & 10 years from diagnosis, they're not the best due to my original tumour being large, aggressive and 'triple negative' (no hormone treatment the doctors can give me). The odds could be a hell of a lot worse though, and for that I'm grateful.  It's such a confusing thing to think about how long I might have left, I can't make up my mind.  Should I act like I only have a couple of years to live? Sell my house, go off travelling, cram in as much as possible? Or should I pretend like cancer never happened? Pay into my pension, plan sensibly for the future?  I'm trying to muddle through at the moment, hoping that I make the right choices.

I was 35 at the time of diagnosis, I had not long split up with my long term boyfriend, I don't have any children.  My life was not going in any particular direction, I was hoping that I would meet a lovely man, get married, have some lovely children, then cancer popped up just to make these things even harder.  I spent months shuffling around in my 'chemo coat' and a woolly hat trying not to look like a cancer patient, and definitely not in a position to do anything proactive about meeting my future husband.  Who would want me anyway? (is what I thought) with my odd boobs, short hair and hours of hilarious cancer anecdotes??  I have since found out that there are some super, super men out there that really don't give a shit about any of the above and actually think I'm quite amazing to have coped with it all.
 
Anyway, this doesn't make the 'life choices' bit of my brain any easier to navigate, it's all tinged with cancer worry now.  I'm not 100% sure I'm still fertile, my periods returned in October which was an encouraging sign , they're not that regular yet but I'm still keeping my fingers crossed.  I now have all the same concerns and worries of a normal 37 year old single woman, just with the added bonus of cancer worries on top.  So when everyone else around you thinks you're treatment is over and you're 'fixed', it's quite the opposite in fact.  You're still coping with the psychological fallout, because whether you like it or not cancer has changed the way you think, there's literally no escaping it.  I've been refused life insurance, I have to buy special travel insurance, I worry about getting my 5 a day, I drink green tea, I wonder about parabens everytime I buy shampoo, am I consuming too much caffeine, alcohol, sugar, soya, processed foods? Should I be getting more exercise, will I get lymphodema?  How long have I had this cough? Why is my hip hurting? Why do I have a headache?  AAAAAaaaaaggggghhhhhhhhh!!!!

Happy Birthday to me!