Welcome to the c word

I rarely show the world what is going on inside it is just not my style. I hide pain and constantly worry about worrying other people and how they will feel about how I am feeling. I keep my problems to myself and sometimes even from my closest friends. Well not this time.

I have been on the c word roller-coaster (I'm calling it the c word to go easy on the faint hearted) for over three weeks now and have decided it is a good idea to write down what's happened, happening and going to happen then whoever wants to keep up to date can without being forced to hear about it through emails from me. Because you will all have days where you just can't or don't want to hear about this. I get that it’s ok.

I hope not but you also might meet people or know people who go through something similar and it might just help them in some way to know they are not alone and when they fall apart it is ok because who wouldn’t. When you read this please forgive grammar and spelling etc I have not slept for three days and sorry too if it is up and down that is pretty much how I am doing most days.

- Tuesday 23rd February 2010

Saturday 27 February 2010

Cheek chewing

I am chewing my cheeks again. Whenever I am extremely worried about something I tend to start to chew the inside of my cheeks, weird but involuntary. It gives me a contorted puzzled expression that must freak out the general public as I walk by. Someone told me once that the skin in your mouth does not re grow so I figure I might chew holes in my face if I keep going, at least it will distract people from my hair : ).

My mind is really troubled this evening, it is getting closer and closer to my next appointment, I got the letter today to remind me, and I can feel the breathlessness returning and someone is slowly turning a corkscrew in my stomach again. It feels like being back to square one in a way, with the apprehension and nerves, awaiting the verdict of which 'aggressive' treatment they will opt for. Do they have to call it aggressive can't they name it something less less...well less aggressive. Like cancer relocation or something more gentle on the imagination.

Let me tell you something ridiculous. I am too scared to pluck my eyebrows. I know don't say it. I keep looking at them and thinking I might not see these guys for a while so don’t aide in their disappearance for god’s sake. You see even if you spend all your time attempting to behave in the most rational brave manner a few stitches still come away at the seams. When you meet another person who has been diagnosed with cancer and you can’t really tell how they are taking the news just look at their eyebrows, if they are bushy they probably need a hug, so give one from me.

The topic of thought for today will be hmm cancer and tomorrow erm cancer and next day well maybe cancer followed by a recap of what you have missed lately about cancer. Everyone says ‘try and block it from your mind, worrying won’t help’ but you can't put cancer on hold or block it out, it is there inside you for one thing and on your mind through every waking moment and apparently, so Phil tells me, through every sleeping one too. I was whimpering last night and shaking in my sleep.

It is the strangest thing that from one day to the next your entire world can come tumbling down around you and people stop and glance over for a moment and maybe some help but in no time at all they carry on like nothing has happened while you climb from the rubble and dust yourself off.

My heart goes out to the victims of our latest tragedies in Chile and still in Haiti tonight. I hope yours does too. www.dec.org.uk

Friday 26 February 2010

Sunshine

There is nothing more therapeutic than sunshine, I totally come alive when the sun is out. I know I sound like an absolute hippy but come on it's refreshingly warm, helps flowers grow and makes everything brighter. Problem is with cancer is you look at the sun and think you total bastard, how could you. Then you get yourself an ice cream and think aw go on then I forgive you, but don't do it again.
I also find myself now wanting to scream hysterically at smokers, Phil shares this reaction. I have come to glaring at them with disgust although I used to be just like them. But come on it is not that simple that you can just tell people not to smoke or to wear sunscreen or to eat shark cartillage (a recent piece of advice from a wonderful lady) because it is up to them, it is one of their life choices. What you really want is not to control everyone else's lives but really desperately for no one else to go through this.
It is hard to watch outside doorways the cigarette smoke being dragged through someone's lungs and blown out into an oncoming pedestrians face without feeling a desperate pull inside the pit of your stomach. You want to walk up to them and say I don't think you really have any idea what you are doing. I don't think you really get it because I didn't, but for crying out loud it's not worth the risk of finding out. To me quitting is easier than cancer - simple. No excuses. Word.

Anyway I didn't intend my reflection to turn into a lecture but there you go.
So Phil and I were talking about cancer, as you do of an evening, and the conversation sparked his memory so he says 'Oh I meant to tell you Dan has invited us round for pasta and glands', gulp, Phil looks at my frozen expression 'I mean sweetbreads, pasta and sweetbreads'. Gotta love that guy. A sense of humour can aide you through anything.

Thursday 25 February 2010

3rd March 2010 Appointment

Got the call from the Royal Marsden in London and I am going there instead to see some specialist about my diagnosis on March 3rd 10am. The secretary called and told me that the earliest appointment he could give first off was 17th March, I nearly threw up, and then calmly pleaded for an earlier appointment or cancellation if one comes up. After a few minutes of him explaining that 'my timing' was unfortunate and the specialist is away next week so therefore there is nothing he could do, he then say oops actually the department already booked you in it seems for 3rd March at 10am sorry about that. Could have done without that today thanks.


Anxious

So I slept ok I think. Until Reuben woke us up at 5am, bless him, in tears with a tummy cake. I make everything into cakes I have realised writing this blog. Reuben had a tummy ache, no I prefer cake, and his tummy cake has moved from one side to the other and although I am trying not to become hypersensitive to health issues its probably worth a trip to doctors quickly as he has had it since yesterday morning.

I am anxious today, my stomach is in knots too. I was told after expecting the visit to the fertility expert to face facts about chemo this week that he can't see me till Wednesday. The one thing I have learnt for sure is that you need consistency more than ever at times like this. To know what you are doing from one day to the next keeps you focused and if someone changes the plan all the mental preparation you have done for that appointment or development goes to waste and becomes anxiety. I also possibly get my appointment time for the Royal Marsden today and every step makes it real again and bursts the safe bubble I created around myself.
I got a bit low last night, not seriously low but just enough to paint my cheeks a little. I think when I get more tired as the evening comes its harder to stay chipper, because no matter how many times you tell yourself you are lucky you found it and that its small enough to remove just a lump you still can't really convince yourself fully inside that you are lucky at all to have fucking cancer at 30. So let's just get that grim fact out there, it sucks to be me right now but what can you do.

Ok let's try to bring this back to a more smiley place. I once sent a good friend a mix tape labelled 'Inappropriate hospital set list' which started with one of my favourite songs 'What happens when the heart just stops' and went on from there with a similar theme. I obviously have a dark sense of humour but you really have to make light of your darkest fears sometimes. So Phil and I were talking about how people go pale and silent when they say the wrong thing and at times like this everyone says the wrong thing at least once, it's ok it really is, it is actually quite funny. So we were thinking about inappropriate songs to play your friend with Cancer or inappropriate films to watch with your friend with cancer. We chuckled through 'Rhythm is a dancer' and discussed finally returning the dvd 'The Fountain' to my brother after having 'forgotten' to for years now. Then Phil announced his best song was 'killing me softly' which abruptly brought an end to the joke with the knowing nod from both of us that we actually aren't funny at all. xx ; )

Wednesday 24 February 2010

Better day today, better sleep last night

So I am alone this morning pretty much for the first time since I found out and I am not in a puddle of tears and it is 9am so this is good right. I feel ok today. The way I am trying to see it is that there is nothing I can do about this today I have a plan and just have to get used to this waiting game. The idea of chemo has undermined any fear of surgery for now and chemo is not for at least a month so I have got lots of time to face it and prepare for it or just deny it is going to happen.
So today I am probably going to clean, I am a stress cleaner. It is like therapy. Phil will come home later and tell me off for doing too much.
But I want to get the plae clean anyway because I am seeing my best chum Beth today hopefully and she is bringing lots of smiles with her ; ) .

Well good news on the Royal Marsden website it officially advises people with cancer to eat cakes, it almost makes you like cancer. I have to eat cakes, doctors orders. and butter and rice and potatoes and bread and dairy products and meat and fish, but no risky uncooked eggs or pate or shellfish. I can do this, I already do well I will miss shellfish. Nice one Royal Marsden you told me my eyelashes might fall out but I can have a cake to make up for it afterwards ahh but I won't want to eat so hmm this could still suck. Still for now I have decided I must eat cakes and chocolate. One step at a time right. First step chocolate cheesecake.

Tuesday 23 February 2010

Boob hair

Anyway to start let me tell you about boob hair. I sense nausea from a number of male readers right now but in all fairness if you can't handle a little boob hair you really need to unsubscribe from this blog immediately.

So it may be too soon to state this, please don't publish this on my grave, but boob hair saved my life. I am no longer ashamed to say that at 30 I found a small dark hair on my right boob, though invisible to anyone else I knew it was there. So tweezers out, sorted. But the bastard came back and kept coming back. On the morning of the 31st January 2010 I stood ready to tackle this little repeat offender once again. Whoa. Phil looks at me I look at him. That’s a lump. That is not usually underneath my boob hair that’s a new lump. Shit.

I remember Phil’s face turned an ashen grey that I probably mirrored. Right, doctors tomorrow straight away we all know the drill. We just never want to have to do it for real. We both dismissed it as best we could for the rest of the 24 hour wait till I could get registered at a doctor’s surgery in Brighton first thing Monday morning. I went alone to see the doctor and sat for a seriously tense hour and half wait before I had to wap out the boobs and let a very nervous man prod them and do what seemed like air keyboard on them. He concluded that it felt normal and was probably a breast mouse but I was brave and had done the right thing coming to him and he would send me for a screening because that is what they do these days ‘just a precaution’. So off I went feeling so relieved that I had new pet in my boob and kind of cute right, a breast mouse of my very own.

*For anyone who finds a lump – go to doctors do not hesitate and be aware that at this point you have the right in this country to request a referral to any hospital in the country so for example The Royal Marsden in Sutton is the first cancer hospital in the world and pretty much the bee knees with cancer, they do the training for most of the uk. I wish I had done this with hindsight but we thought it was nothing at first.

The screening 10th February 2010

Eek. Yeah nervous as hell I had an appointment a week or so later at the breast diagnosis clinic that Phil and I took two stressful hours to get to from Eastbourne due to an accident. I arrived half an hour late for the appointment but they saw me anyway thankfully because I called ahead. So super stressed already and my head was pounding as the consultant told me it felt like normal tissue but they will do an ultrasound ‘just a precaution’.

Off we went to the second floor me feeling fine albeit a little like a drunk girl at a fraternity party. Dr Rubin, cool name, did the ultrasound and that is where it all went all kinds of wrong. He slipped into speechlessness somewhere what felt like mid sentence but was no doubt more subtle than that. The precautionary ultrasound turned into a mammography and mammography turned into four and that turned into an hour and a half wait then an emergency biopsy which is where they force needles into your boobs under a local anaesthetic and take out tissue to test for cancerous cells, it’s not as bad as it sounds you don’t feel it. The same with my armpit, while I hoped my deodorant would hold out. I left being told two weeks till they could give the results to me and I would have to come back. Phil and I sat in one of the cancer consultant rooms surrounded by at least six tissue boxes and I remember saying to him ‘god people actually go through this for real I feel so bad for them’. It was a shit four hours I won’t lie and a shit few days but after a while I had totally decided that everything was fine and they were just being careful.

The day I found out I had cancer. 19th February 2010

I arrived at my place in Brighton with Phil and his boys (Reuben and Isaac) we were on our way to my mum and dads for the weekend. I put the TV on for the kids and picked up my post. First letter, ‘Dear Miss Bolland, Sorry to read about your diagnosis today. If you need to talk about anything please call and make an appointment. Dr …’ “Oh my god Oh my god Phil oh my god”. Ashen face gone white then green. Phil reads it and Nikki. ‘Ok calm down this might not mean anything we can call them’. No one available no out of hours provided by the clinic. No one at the breast clinic no one could tell me anymore than those words on the very brief letter dated the 18th February 2010. The next 72 hours, without being dramatic, were the worst I have ever experienced in my life. I was in shock and then pulled it together for the kids followed by further shock as I told my parents and then the nausea moved in and it stayed for the duration. I could not swallow one bite of food even if I tried and I couldn’t catch my breath. Like someone had sucked half the oxygen out of the air within a split second. It felt like a dark cold cave with a wave that rolled over you every few minutes pulling you under and throwing you against the rocks below then up to breath and find your feet ready for it to happen again.

My rather pessimistic mum had already made some plans that were great but I was not ready for the flow of steady information overload that came my way in the first 24 hours. Too much to get your head round, too much to deal with. That is when I turned to you, I needed to get it out there and start laying my support network out and not one of you failed to come up with the right amount of support and care that I needed to help to come to terms with what had happened. Thank you.

The nights are the worst because darkness does not distract you from all the scary things that run through your previously stable mind. So much speculation and so much natural fear will bring down even the strongest person. I had no idea if they would say right that is it you will have both breasts removed or you have six months to live or its spread to your lungs. You try not to think it when you have been told nothing more than your diagnosis was something to be sorry for. I found some space to relax and took the boys out gave them somewhere to run wild and even found time to laugh and make a song about cancer with Phil, you have to do it. But Monday morning was horrific, the not so comfortable bubble was about to burst and that diagnosis is going to become real. Emotionally I could act as though I was fine but the adrenalin has different ideas it courses through you and takes your breath away and knots your stomach. I found myself on the floor gripping the carpet with dizziness gasping to breathe until I told myself to get a grip and focus on the kids. They are fed and dressed and nearly ready to go and totally unaware, except one small moment Isaac caught me crying but I explained I was worried about going for a little operation and it is silly but I have never had one before and grown up gets scared sometimes too. He told me he did not know what to expect when driving towards the flying fortress adventure park yesterday for the first time so understood how I felt, thanks Isaac. My mum wants to get going she is worried we will miss the doctors down time before appointments start if I am not there at 8.30am sharp. But we can’t worry the kids so I leave Phil very reluctantly for him to follow on and the next thing I know I am dropped off alone outside the doctors shaking. I queue up and finally get a chance to be rejected by the receptionist ‘no you can’t see him he is doing children’s clinic all morning’ so I break after 36 hours of torture and speculation. I cried in front of a queue of shocked and disgusted people as I was forced to explain I have cancer and I found out by accident because of the doctors letter. She told me I better come round the side, where she proceeded to leave me waiting a little longer alone!

The doctor was gutted, he was shaking as he apologised and wrote a note for a referral letter to a hospital for further treatment. He rang the clinic and explained and a Macmillan nurse called me back while I travelled with Phil in a blur towards the clinic to demand for my diagnosis.

I believe from talking to others that there is one generalisation you can make in the world and that is Macmillan nurses are amazing. Sarah the Macmillan nurse saw me immediately. She did an exceptional job, with little information to hand, at calming me down, but still no full diagnosis. She explained I would need chemo and described in a matter of fact but gentle way some, not all, of the extremely unappealing side effects of putting poison in your bloodstream to kill all of your cancer cells and everything else that dares to live inside you. They normally record the consultation sessions because you zone out when the words get too much and you need to refer back to what they have said. I vaguely remember ‘we encourage you to go into this believing you will lose your hair as most women do’ and ‘some people cannot fathom waking up without breasts after an operation so they prefer to have reconstructive surgery during the same operation’. It is sort of ridiculous how in this vain society the first thing you care about is hair and boobs in a way before your life but I suppose I am not willing to accept my cancer is life threatening. I still had no idea what was going to happen and how bad my cancer was.

Macmillan nurses - 0808 808 00 00 http://www.macmillan.org.uk

One more day to wait.

So that leads us to today 23rdFebruary 2010. I went to uni, saw Agata and Nikki and felt a load better I actually managed to force a bacon roll down, thanks to Nikki being very normal with me and warming her feet on the hums cafĂ© radiator. I still thought about nothing but cancer all day but I was proud of myself for getting up and out the door, you have to do this it is important, see people even if you don’t feel like it and don’t spend long wallowing.

I figured out online on the Royal Marsden website that I would lose my eyebrows and eyelashes if I lost my hair, gutted. I mean it really is incredible that when we first heard it was on the cards that maybe if I survive I would lose boobs, hair including eyebrows and eyelashes and lose weight (I don’t want to unlike most girls) and become menopausal and seriously ill and possibly no children but Phil lazarou.me still looked at me when I ask how he would feel to wake up to that and said ‘I love you I don’t care you will still be you I am not going anywhere’. There are no words to fully describe someone like this. When I couldn’t sleep and wandered the house he woke up after a few seconds and pulled me back to bed and hugged me when I cried and made me laugh when I needed he bought me stupid things to distract me and enticed me to eat with nice food. And I look at him so tired blue black bags round his stressed bloodshot eyes and can’t believe it that he would still do it all over again everyday for as long as it takes. This would be so much harder alone.

So 3pm came, Phil came to get me from uni and we were on our way to find out the details. Eek. So we get sat in the tissue box filled consultancy room and breathed in. The doctor revealed that to my great relief I would not need a mastectomy for the size of the cancer I have at present. I cried a few tears for the first time in front of them, just so relieved like a weight lifted. Oh but then it turns out when I replay the details I am not home free. I am 30 with breast cancer and that is rare. Only 3 people on average every year in Brighton get it at my age and this year two of them were this week, one of which is me. So they are concerned it is in my genes. If it is in my genes they recommend a double mastectomy and double breast reconstruction. Great. I was scared about losing one boob and now I am faced with the fear of losing both and the kicker is I won’t know for two weeks after I have surgery so in six weeks time, if I stay with Brighton clinic.

But it is only a lumpectomy for now so I need to float in the relief respite of denial for one evening at least. Next they say you need to decide if you want kids. When pushed in a corner like this, and even though I had recently decided I didn’t really want children, your mind finds instant clarity. I reply I definitely do absolutely do and their faces visually drop. Chemo has another plan and that plan does not involve kids. So I am awaiting a call to confirm an urgent appointment with their in house fertility expert this week and I have decided speculation is your enemy so fight it until you hear the facts. The outcome of today is a referral to get a second opinion at the Royal Marsden hospital while I sit on the waiting list for surgery with the Brighton team for four weeks time as soon as I decide where to go I drop off the waiting list allowing someone else to take my place. It is likely the doctor tells me that the Royal Marsden will give me a different theory of what treatment I need so I am keen to get this and decide somehow which one I should put my faith and life into.