Wednesday 25 September 2013

Honesty, realism, tears and chemo 6.

Ok, I realise I have many people reading what I write at present (12910 page view's at the last check). Some of you may not like what I am about to write, some of you may not even agree with the fact I've so openly and honestly decided to write this, but I need to. I set up this blog to offload how I feel, a way to write how I feel and leave the feelings there, something to look back on in the future and something, most importantly, to help me move on through my journey with some of my sanity intact.

Yesterday I had chemo 6, my last chemo to fight this lump. I am scared to say last chemo ever in fear that that may tempt fate and almost invite cancer to darken my doorway once again at some point in my future. Before they give me each chemo I see my oncologist, he checks how I'm doing both physically and mentally, prescribes any medicines that may help me and ensures I am fit for the next infusion. Now chemo 5 wasn't exactly an easy ride. Not only do the side effects of each dose provide a cumulative effect, ultimately making me feel weaker and weaker and making me look sicker and sicker, but this time as my immune system dropped I picked up three bugs. Firstly, I have two ingrown toenail's, I had an pre-assessment appointment for surgery needed on them that I had to cancel as it was on the day of the cancer diagnosis. After this they became the least of my worries and due to low immunity and low clotting levels during chemo I knew nothing could be fixed until I was through this cancer business. Those still being ingrown, and the fact my body is so run down and not quite bouncing back as it quickly as it has previously,  I ended up with them becoming infected quite nastily and quickly over about two days, requiring antibiotics. I also picked up a cold at about the same time thanks to the change in weather, I am asthmatic, prone to chest infections, so no surprise there I developed a chest infection, requiring a different antibiotic course. Now this would take a "healthy" person time to heal from, I had 5-7 days from starting antibiotics to seeing the oncologist. Luckily my bloods have picked up, despite them being at their lowest so far prior to chemo. My oncologist asked how I felt about having the last dose. I could quite easily have said I wanted a week off to recover; I could have walked out that room and had a week to myself where I could begin to feel well again. Instead I said I wanted to go ahead, my stubbornness raising its head again, however if I'd have taken a week off I know I'd have been disappointed in myself almost. That is the first time I have had an option to say no to chemo at that time, the first choice in this madness I have actually been given, but I did it anyway. It probably means I am in for a really rough couple of weeks, but that is it then, or so I hope.

Sitting having chemo for me is a strange experience, that fight or flight natural body response kicks in with a vengeance. I so badly want to push the nurse away, rip the needle out or run as far and as fast as my shrivelled up body can physically manage and then some more. All that release of natural body chemicals and having no way to escape makes me very tired, all I want to do is curl up in a tiny ball as they poison me. After the first half hour, I kind of come round and sit there with half a smile on my face giggling with my mum and the nurses. Yesterday halfway home I cried and I cried repeatedly quite a few times for the rest of the night. Feeling unwell from all the bugs, lack of sleep, being wired from the steroids, feeling like I should be happy like everyone else that the last dose is in but knowing I have two weeks for the worst of the side effects to be over and then 6-12 months before all the side effects are fully gone. Then there is the fact I never ever thought I could possibly get to number 6, there are so many times I have wanted to give up. It really does all get a bit overwhelming sometimes.

As you can imagine I wasn't feeling at my best yesterday, the last thing I needed was to get into the argument I did with someone who I thought was meant to love me and care for me as much as I do for her. I was, and still am, so cross, upset and hurt right now, hence why I need to clarify a few things and offload how I'm feeling. I was told last night that I needed to get over myself, I "only have cancer" and that there are a lot of people with cancer who are worse off than me, mines only mild and I should stop moaning as I'm "lucky".

Firstly, yes, there are people who are worse off than me, and in some respects I have been lucky. I was originally told by a specialist in a hospital breast clinic that that lump was nothing to worry about, many women would have grasped onto that and have left it there. I feel gut instinct counts for a lot, so when just months later it was twice as big I went back to the GP. Which I tell you now isn't easy, knowing that you'll have to get your breasts out for at least 3 different strangers to have good old poke at is often enough to put people off going the first time never mind going again after being told it's nothing. Anyway I went back, and it's a good job I did, statistics say an average of 1.4 people per 100000 will be diagnosed with breast cancer aged 20-24, that makes me unlucky I feel, but I caught it before it managed to spread. Had I not gone back when I did this awful disease could have been practically anywhere in my body, suppose in some weird twisted way that might make me lucky.

Oncologist's have a special computer system in which they input the details of your personal cancer, such as age at diagnosis, size of tumour, grade of tumour, node involvement and positive statuses. This spits out an almost personal average survival rate for the next 5-10 years, this is normally done post-op, I however needed to know how much difference chemo would make to my long-term survival rate to help me through the last few doses. I was told that with surgery alone and no further treatment I had a 48% chance of being dead in the next 5-10 years! Still lucky? Chemo gives me an average of an extra 17.7% chance at life; other treatments give me more and more chance too. This has helped me push myself through; an extra 17.7% is huge! Some people are told 1% benefit of chemo and are then given the option. 17.7% means I had no choice; chemo is too beneficial for the oncologists to give me the decision. Definitely helped me sit through each and every infusion after I'd heard that!

As for that lump being a "mild cancer", if there even is such a thing, mine's not. It's grade 3, the highest grade they have (different from staging which I will be told post-op). This means the cells divide rapidly and they look very different to "healthy" cells under the microscope. Hence why it grew so rapidly, 3.5cm at diagnosis and 3-4 weeks later it was seen at 6cm on MRI with a suspicious patch next to it that they originally felt to be the tumour breaking apart, possibly the first sign of it trying to spread. That patch was not visible on ultrasound, so I pray it is hormonal as they then suggested it may be, just like the streak on my left side. This is why I require an MRI again before my op, to ensure it's no longer there as that would change my surgical plans quite drastically.

If I have the gene they have tested me for this thing could turn back up anywhere and at any point. For the rest of my life with every innocent headache, stomach ache or pulled back I will be in constant fear that it is not so innocent and the thing has returned somewhere else, uninvited and definitely unwanted. All they can do with the TP53 gene is regular scans, there is no preventative measures like there are with the BRCA genes. This is something I am currently trying not to worry about, as I may not have it and the thought of having it is a little overwhelming right now.

I sometimes feel as if I am sat still in life watching my friends have a social life, worry about normal things such as their weight and how they look, watching people get pregnant or get married. I am over the moon for these people, do not get me wrong, sometimes however it is hard not to feel sorry for myself. I may never be able to have children, I have changed so much both physically and mentally these last 4-5 months and I have no idea if cancer is what will ultimately cause my death.

For the last 4-5 month's I have avoided looking past the next three weeks, some days I have not even been able to see past the next day. Now I feel that I can look a little further into my future, have a life, be happy and maybe at some point in the distant future feel "normal" instead of the freak show I currently feel. 6 months ago the majority of people probably wouldn't have taken a second look at me in the supermarket, now I feel people staring, either at the back of my head or quite openly as they stand near me in the queue or walk past me. I crave normality, hair and the usual worries that come with being 24.

I'm sorry for the length of this post and I'm sorry if there is anyone out there who disagrees with me offloading this. I need to do it for my own benefit for a change. Maybe I should stop putting a smile on my face so often and tell people how it really is. Cancer is horrific, I would never wish it upon anyone.


Yes I have, in some ways, been lucky, in other ways I'm not so lucky. However you view it I am still fighting for my life every single day, at just 24.

Monday 23 September 2013

Chemo 6 of 6 tomorrow!

Chemo dose 6 of 6 tomorrow!!

I am completely dreading it, knowing I am going to feel rotten for the next two weeks is difficult. It's funny how you don't realise how being "well" actually feels until you've not felt it for a long time!

However, tomorrow is the last fighting dose. One more chance of killing as many of those horrid cells as possible before my operation.

I never ever thought I would get to this point, dose 6 - that's massive! I have so many times over the last few months told myself I won't or can't have anymore. I've had to fight a mental battle with myself regularly to get to this point. But I've now almost done it.

One more horrible poisoning session to sit through, then to ride that side effect train and take one more battering to my body. Hopefully after all that I will start to learn again how being well really feels. I cannot wait and I will no longer take advantage of feeling like that!

BRING IT ON!!!! Xx

My head shaving video from 20/06/13.

Video from my head shaving party (20/06/13), the main part of my shave. Can't believe I smiled and laughed all the way through this! Didn't shed one tear that night, until I was told I had to stay in hospital.

Thursday 19 September 2013

Surgery plans.

Saw my surgical consultant on Monday. He is happy with the good response I've had from chemo and can, like me, only feel the edges of that lump. He feels a wide local excision (lumpectomy) is the right operation for me, rather than a mastectomy, which is fabulous!!

I should be having the op 4-6 weeks after my last chemo, that way I have time for my bloods to recover but the nasty cells dont have time to start multiplying again. 

Before this I need an MRI scan to see the size of the lump and ensure that second suspicious patch is no longer there, if it is that may change my surgery plans.

The incision will be directly above that lump and my surgeon is hoping to stitch it the same as he stitched after my sentinel node biopsy, so hopefully a pretty neat scar.

One of my biggest worries was that an operation would prevent me from breastfeeding any children I may be lucky enough to have in the future. My surgeon says that a lumpectomy shouldn't affect anything in that respect, which makes me one happy lady!

Although I am nervous about going to theatre again, I am also excited to get it done and dusted. Surgery feels like another line in the sand on my journey, the line between having cancer and having the thing gone. Everything after surgery feels more like a preventative measure to ensure this thing hopefully never, ever returns.

Wednesday 11 September 2013

Does cancer have a smell?

I've often heard before my diagnosis that some people and animals can "smell" different illness' and disease's, like the dog's that can sense when someone is about to have a seizure.

I've not done any scientific research, or anything like that, so who am I to comment, but since starting chemotherapy I have begun to wonder if cancer really does have a "smell".

A few days after chemotherapy I get an overwhelming smell of metal. The smell that is left on your hand's after holding a handful of coins, just like that, everywhere. No matter how long I spend scrubbing myself in the shower I can still smell it, only for a few days, but each time it's there. I have thrust many of my body parts under the noses of my loved ones, they can never smell it though. The only way I have found to overpower that smell is to put talc on my head! (Just in case someone reads this who feels talc can cause cancer, I already have it, and everything causes cancer these days apparantly. Besides, it's a good excuse for a head rub!)

Surely such a big lump of cancer cell's being killed must have some sort of smell? Flesh smells as it rots, why not cancer?

Whilst I'm on the subject of cancer senses. I also sometimes get a dull ache in my affected breast and frequently get a dull stabbing pain directly where that lump is, mainly in week two of my chemo cycle. After speaking to other women this seems to be a common thing. I like to think it's the cancer cells screaming as they die.

On a huge positive note finish, I am really struggling to feel that lump now! Chemotherapy is a wonderful and amazing thing, despite its nasty side effects, it really is magic! Xx

Friday 6 September 2013

Nasty nasty taxotere!

Taxotere is a sly form of chemo!

With FEC I felt rubbish just a few hour's after the infusion. Tax on the other hand seems to want to lull you into a false sense of security. Leading you to thinking you'll have minimal, easy side effect's and that you'll manage just fine. Then it hits!

Transfusion day (Tuesday) and Wednesday I felt pretty much ok, little wired and fuzzy which was probably due to the steroids that have to be taken to reduce any allergic reaction to the tax and combat sickness. Thursday morning onwards I had the usual "post-neulasta jab" aches, solvable with a pillow between my legs and ibuprofen tablets regularly. Then from last night it was like a ball had been released from the top of a high steep hill. Gradually meaning me becoming more and more sore and increasingly tired, my appetite disappeared somewhere, then the ball picked up some immense speed and then BAM! Right into me!

I have realised however that if I do anything at all the aches are so much worse. Lying still, preferably in a boiling hot bath, is the only time I don't want to cut my own head off. Thank goodness for the port-a-cath! I wouldn't have had that option with a PICC.

For those that don't know me well, being still is a very hard thing for me to do! I hate sitting still, I am far too stubborn for my own good sometimes. I have to keep reminding myself that, yes, whilst I may not be ill as such I am still fighting, fighting that horrid little lump with every ounce of energy I have, which is why I must rest.

I know I only have one left, but if I told you "you'll only be flattened once more" would you relish in that thought? Or dread every minute of it?

Luckily, the thought of the thing killing me off scares me about 2% more than chemo does right now, plus that stubborn streak needs to prove that it's not for hiding away anytime soon.

Once again I say goodbye to a weekend and become one of the only people praying for it to be next week already! I have a selection of painkiller's and hot water bottle's for me to pick from, at least the codeine helps me sleep through the pain a little.

Good job I'm not up and about really... I'm sure I'd rattle if you shook me right now. Xx

Wednesday 4 September 2013

Chemo 5 is in! One to go!

Yesterday I had chemo number 5!! Which means once the horrid side effects have been ridden again I only have ONE dose left! Yes, just one!

This does not mean the end of treatment, I still have an operation, 4 weeks of daily radiotherapy, 16 infusion's of herceptin and 10 years of tamoxifen to come. But it will be the end of chemotherapy, and I cannot wait!

Chemo 4, 5 and 6 are all taxotere. People ask if it is better or worse than FEC, my honest answer? I do not know. Taxotere has brought minimal sickness which is a massive blessing, but the aches are awful, feeling every bone and muscle in your body hurt isn't pleasant. For the first time in my life I spent most of one day in bed drifting in and out of sleep, waking only for painkillers and water. Many women describe it as being hit by a "tax truck", which I feel describes it well. The stomach cramp's wern't nice, I did however get away with only having one nosebleed! Each drug is evil in its own different way.

On a hair-watch note, I do have the tiniest bit of regrowth on my head (imagine a peach and you'll get a rough idea), however my eyelashes and eyebrow's are quickly giving up, which is horrid, for me I think losing them has been more difficult than losing my head hair. Roughly a week after chemo 4 was the first time I felt I truly looked "sick" or like a "cancer patient". Thank-goodness for make-up and some fabulous days and nights both out and in with some of my friend's and family! They really do keep me (almost) sane.

Saying this though, on a positive note, yesterday was the proudest I think I've felt about myself throughout this horrific journey! Willingly sitting there whilst someone pumps you with poison isn't easy at all, and I have done that 5 whole times so far! That is something I sense I should be extremely proud of, and I am!

For one more final giggle, the amount of bald fun you can have is endless! Meet my new fella! (Luckily my boyfriend doesn't mind too much as mr egg was whisked into a rather lemony sorbet! Yum!)


Tuesday 3 September 2013

A quick little link.

Just a quick one...

Seen this link tonight: http://www.telegraph.co.uk/health/healthnews/9667295/Friends-and-family-boost-breast-cancer-survival.html

"Breast cancer patients with a wide circle of friends and relatives are 38 per cent less likely to die within a decade of being diagnosed than those with few friends and less close-knit families, found American researchers."

I can completely and utterly relate to this. I couldn't have come this far without the massive support from my family and friends! Xx