Now that's scary!

I had my first appointment with the oncologist today and came away feeling shell-shocked because it is so stark hearing your life defined in terms of ‘survival rates.’ I was shown a graph which outlined the probability of women fitting my statistical profile surviving 10 years based on various courses of treatment and everything was discussed in terms of ‘your best survival rate.’ The statistics showed that if I opted for no treatment at all there was a 55% chance that I would die of cancer within 10 years and the figures for having just one type of treatment were also very poor. The computer model predicted that if I have chemotherapy, radiotherapy and hormone treatment my 10 year + survival rate is 32%. Admittedly the doctor was keen to tell me that this is considered a very positive figure as she sees many patients who are looking at single figure percentages, but to see a prediction that on average just 1 in 3 women in my situation survive 10 years or more was frightening to say the very least. It certainly puts the whole thing into a very sharp focus and really brings home the fact that one is never really ‘cured’ of certain types of cancer.

One of the main reasons for the figures is the fact that I have lymph node involvement and apparently even a low number of infected nodes still ramps up the danger of the cancer having escaped to take up home in other parts of the body. I will have to have a CT scan before I start treatment just to be sure that I have nothing elsewhere to worry about, then in about 3 weeks time I will have my first cycle of chemo. I will be having 8 cycles so that I can have smaller doses because of my underlying health condition. AC (Doxorubicin & Cyclophosphamide) first followed by Docetaxel and when that’s over I’ll be having radiotherapy for several weeks. I turned out to be HER2 negative so there’s no benefit in my having a course of Herceptin but I will be able to have the hormone therapy.

I am feeling so overwhelmed by it all today. It’s awful to contemplate the possibility of such a shortened lifespan, even though of course logic tells me that there is no reason at all why I shouldn’t be in the 32% of women who survive more than 10 years, but it just seems so bleak when you see it as a set of statistics. At least having all the treatments does considerably stack the odds in my favour. As the oncologist said; the choice was a ‘no brainer.’ Interestingly, I was chatting to one of the Breast Care Nurses earlier on (it looks like I might be developing a seroma on my wound) and she was wondering whether the oncologist would consider the risk of chemotherapy relating to my general health might outweigh the possible benefits and she’s very keen to hear what the decision was.

Meanwhile I now have to brace myself for the endurance event that is chemo. I plan on having a substantial (but not radical) hair cut shortly and will be sorting out a wig. I’ve been advised that I will qualify for one wig on the NHS and that an advisor will visit me at home to discuss and fit something suitable. I am also going to buy a second one, probably something a little more glamorous for dressing up occasions. Plus of course I’ll need to invest in scarves and hats as I’ll be without any hair at all when it’s coldest. The oncologist was very up front in telling me that all her patients following the same regimen lose their hair early on and I’m glad she was honest enough to tell me that as it avoids any false hopes. 

I really just don’t know how I’m going to deal with it all. That said I did end up going out today without my prosthesis on because it was just too painful to wear even the softest post-op bra and a week ago there is no way on earth I would have been prepared to do that. I did have lots of layers on though, so the fact that I was mono-boobed probably wasn’t that obvious to the casual observer!

Hey Ho! So here’s looking forward to such a jolly Christmas!

It’s a curious thing

Yes, a very curious thing how having cancer can inflict change not just on the person who has to live through it, but those around them too and sadly it is not always for the better. I am lucky that I have a very supportive husband and family, it’s just a shame that I cannot say that about all those I thought of as friends. 

Some friends have just found it all very difficult to cope with and because they either can’t think of the right things to say or are scared of saying the wrong thing, they stay away. Not very nice, but sad rather than upsetting or annoying. Then however we have an entirely different set of ‘friends’ these are the people you have known for a long time, perhaps trusted a great deal and supported when they went through their own difficult times. These are the people who see that you are vulnerable and rather than stepping in to offer help, comfort, support, they take advantage of your situation and use it to their own advantage. It’s a sad but very common occurrence and whilst yes, like anyone else I have known betrayal in the past because that is life, I was not prepared for the fact that someone would deliberately use my current situation to behave in a morally reprehensible fashion, waiting until just a few days prior to my surgery to turn on me in a very cruel way.

What is it about human nature that makes it possible for us to do this to each other? Is it some baser animal instinct that recognises ‘weakness’ and sees it as an opportunity for gain? There must be an element of that involved, I am sure of it, particularly when seemingly pleasant and ordinary people behave in the most spectacularly bad way, something they’d never do if they thought you were capable of retaliating. Speaking to others in the same situation I came to realise that I am in no way unique. Many had similar stories to tell; whether it was work colleagues behaving badly, friends or family being perfidious, somehow it seems to be a less than savoury result of one having cancer and telling people about it. 

For me it was a very bitter pill to swallow. I am not naive, you don’t get to my age and do some of the jobs I’ve done and still have your ‘innocence’ intact, but I admit to being shocked at the callous way a very small element of my friends have behaved and found it very curious that they felt they could do this with impunity – they can’t. Initially I thought I could try to forgive and forget but then I realised that I was perhaps sanctioning their behaviour by doing so. As a result I won’t be ignoring it but whilst I see battling it out with them as rather futile (who wants to be doing this whilst going through chemo?) it is something I won’t and can’t forget.

Looking at the opposite of all this is the wonderful fact that many people who I have thought of as acquaintances rather than friends have proved themselves to be friends indeed (and deed!). I have been touched and in some cases very moved by the support that I’ve received from those people and it made me realise that ‘friendship’ is something that is not so easily defined. How warming it has been to receive such wonderful messages of care and support; it helps restore my faith in the basic goodness that most people have.

To those who choose to stay away rather than risk offence with a miss-chosen word, I would say that even the smallest of contacts is reassuring. If you don’t want to phone then sending a card, an email or even a text shows that you do care and that you haven’t forgotten what your friend is going through. You would be surprised and I think gratified, if you knew just how much even the smallest gesture of support is appreciated.

Please don’t forget that I am still me!

I’ve been trying to prepare myself for the start of chemotherapy and all that that entails but isn’t easy. Much as I appreciate the kindness behind it I am starting to resent the fact that some people appear to be defining me by the fact that I am being treated for cancer. They are bombarding me with all sorts of advice and everyone who hasn’t been through the experience themselves seems to have an opinion on what I should be doing to cope with it. Thank god for the forums on places like Breast Cancer Care where I can talk to people actually going through the same thing!

It seems that everyone knows someone who has had breast cancer (unsurprising when you look at the statistics) but unless you’ve actually been through the experience yourself you cannot possibly understand what is going on inside my head. Examples of this include the eagerness for people to give me advice on diet and food supplements – I am being advised to give up this or eat more of that, when really it doesn’t make that much difference at all as long as I maintain a healthy diet. 

Then there are those who having never experienced it firsthand, want to tell me what I should be doing regarding the loss of my hair. My long blonde locks have been a ‘trademark’ of mine for quite a few years now and it’s almost as hard facing the loss of them as it is dealing with the loss of my breast; both of them are part of what makes me a woman. I am tired of being told to go and have it all cut off now and to get used to having short hair indefinitely. This is intensely personal for me and rushing to have my hair cut is not something I want to do; I want to see what happens first. The shock of seeing myself with virtually no hair before I even start chemo is not an ordeal I wish to put myself through. Besides I am planning to wear wigs most of the time anyway and I want to work up to the prospect of hair loss gradually. My hair is down to my waist and having it  cut off in one fell swoop is not going to do anything for my already fragile emotional state, so why would anyone think this was a good idea? It’s very easy to say when it’s not happening to you. I have arranged with my stylist (who has been fantastically supportive) to cut my hair in stages and I am buying a wig to wear almost straight away which she will tailor to suit me. I cannot face the prospect of short hair easily especially when I know from professional advice on the subject that short hair and me really do not get on. I guess you could say that my face isn’t ‘cut out for it!’

All of which leads me back to the title of this entry – at some point, sooner or later and even though it is not in any way intentional, a lot of the people in your life start to define you by the fact that you have cancer and what kind of treatment you are receiving. Cancer is NOT me, it is NOT a part of my personality, it is something that is happening TO me! I find myself having to resist the urge to shout this at people and also in some cases ‘I’ve had a breast removed, not my brain!’ on a regular basis and if it’s like this now what is going to be like in the months ahead?

The endurance test begins here!

I don't care what all the 'celebs' say - this is most definitely a grueling endurance test, not really a battle or a journey. You just have to find your own inner strength to get you through it. I'm not sure that I've found mine yet - I hope it's lurking around here somewhere!

Today was final results day and as usual it was a bit of a mixed bag and I'll try and explain it as best I can.

The main lobular invasive tumour was 5cm, which when added to the rest of the cancerous areas meant that a large part of my breast had cancer in it, so it was absolutely the right decision to remove the whole breast. Instead of removing all my lymph nodes the surgeon opted to remove the bottom half and of those 4 were found to have cancer cells in them. The good news is that he's pretty confident that I will require no further surgery - yippee! 

The crappy part of the bag (all that stuff that you don't want to look at!) is that I will definitely be having chemo and probably radiotherapy too. The chemo will be started just before Christmas - what a nice present to look forward to! I guess I'd better start dropping hints to the family about wigs and head scarves as presents then! My Breast Care Nurse said that it was likely that my treatment will take up the better part of the next year - gulp!

It couldn't be confirmed at this stage whether I am HER 2+ as there was a problem with the histology so it's been sent away for further testing. This will ensure that the oncologist has all the information to hand before she decides on my treatment plan. I will get to meet her in 2/3 week's time and then we will discuss the exact nature of treatment.

One thing everyone is completely certain of is that checking my breasts regularly and going to my GP the moment I spotted a problem most definitely saved my life.

Right now I'm back on the bus to limbo land. I have a lot to think about and take in and I'm back in that weird 'surely this is happening to someone else?' place at the moment. I am hugely relieved at the knowledge that no further surgery is thought necessary and that whilst I have to face getting through chemo, I will be coming out the other side of it, even if that's going to take a little longer than I'd first planned for.

I'll keep posting here as often as I can - although the wonders of BT and its amazingly poor broadband service in our area means that it won't be quite as often as I hope. Now however I am going to wallow in a nice warm bath for a bit as I contemplate life, the universe and whether somewhere along the way, the answer really is '42'!

Now the deed is done. . . one week on

I am back at home and feeling pretty shell-shocked, even now part of me feels like the whole thing has happened to someone else. The operation itself went absolutely fine with no complications. I was admitted the day before and everyone involved in the surgery was there to go through my medical history, ask lots of questions etc so that they were all as prepared as they could be. I was put on a hydration drip that afternoon, and whilst obviously feeling nervous about it all, felt that I was in very good hands. That however did not stop me from spending the entire night wide awake! I wasn’t allowed a sleeping pill because of the dangers of it affecting the anaesthetic and boy did I need one – thank heavens I was in a single room and unable to disturb anyone else! I was awake for about 28 hours straight in total; not a good idea! It made a huge difference to me on a personal and emotional level to be afforded the privacy of a single room; a real boon to anyone having this type of surgery, and one I was very grateful for.

A word here about the staff who looked after me during my 4 day stay in hospital – the epitome of everything that we would all wish the NHS to be and nothing less! Surgeons and doctors who even check up on your well-being when they are off-duty because they care so much, and nurses who look after you with sympathy and compassion – what more could I have asked for? I am deeply grateful to everyone involved with my care at North Devon Hospital; they are a truly wonderful group of dedicated, caring professionals!

I was discharged from hospital on Saturday afternoon instead of the usual Friday because on Friday morning I had a bad episode of vomiting and diarrhoea. There was concern that I had contracted a bug but I’m pretty sure that it was just a reaction to all the stress of the previous few days as it didn’t persist. By this time I had psyched myself up, in the presence of a nurse, to look at my wound and also managed to give my husband a quick look at it too. The nurse was brilliant and sat and held my hand whilst I cried, not so much because of the wound itself which is very neat, but because it was the first step in acknowledging the loss of my breast. This is an ongoing process and I am not yet reconciled to it at all. My husband was wonderfully matter-of-fact about the whole thing which helped enormously.

On Friday my Breast Care Nurse had called by to give me my temporary prosthesis and to leave me with some immediate post-op care advice. I have my booklet of exercises which I have to start on at the weekend, plus of course there is all the things to be careful about to avoid contracting Lymphoedema – just a bit scary but of course very necessary! It felt very odd on Saturday lunch time getting dressed and putting on a bra with a prosthesis in it, somehow it was me, but not me. Very difficult to actually put into words!

My first few days at home have been a mixture of relief that I’ve now had the surgery, anguish at having had my breast removed and anxiety because of course I still have to go back for my histology results on Friday and with that brings the news of what happens next. I am still in pain and needing most of the painkillers I was prescribed, all though each day is just a tiny bit better and I am managing to get a reasonable amount of movement in the affected arm. The weird part is not having much or any sensation in my right arm pit, on the underside of my upper arm or just below my arm pit as a result of having lymph glands removed. Washing is a truly surreal experience as sometimes it is hard to tell if you are applying soap, water, etc in the right place unless you actually look! Right from the very beginning I knew that bathing was going to be a big hurdle to get over, not physically but emotionally, because our bathroom, like much of the rest of the cottage has a lot of mirrors in it. It is hard to turn around without catching sight of yourself in at least one of them, so I was going to have to face up straight away to knowing what I now look like, and it wasn’t easy to do. 

My husband has been absolutely amazing – very quick to help when needed but also to demonstrate that it hasn’t affected how he feels about me either physically or emotionally. He was there when I had my first bath, holding my hand and telling me how he loves me even more for being so brave. I love him more than ever just for that simple affirmation! I am so grateful to have him at my side during these times.

Today I am venturing out for the first time since leaving hospital and it’s going to be a strange experience. We have boring household stuff to do but first of all we are just going to find somewhere nice and quiet for lunch, as I think I need to break myself in gently to rejoining the world which I know I have to do.

and now the day has dawned

I took 2 sleeping pills last night because I was absolutely determined not to have a bad night, but I still woke up at 3am and was awake for a couple of hours! Stupid brain, it had better not do that once I've had surgery!

This morning I am spending a couple of hours online, checking emails, Facebook and so on, posting some thank yous for all the lovely messages of support I've received. It did me a lot of good to see just how many people care after the horrible work debacle of last week.

Not sure what I feel about this afternoon and tomorrow at the moment. It's a weird kind of emptiness; not quite fear but not really acceptance either and very hard to put into actual words. Logic tells me that this is part of how our psyche deals with something so momentous in our lives; it pushes a kind of pause button allowing you to float free for a little while. Whatever it is, I am taking full advantage because once we start driving to the hospital I'm pretty sure that I'll feel awful from that point on.

My OH is dealing with things in his own way and today it is a mixture of a mad cleaning spree and getting irritable with everything. I don't like it when he gets like this (cleaning aside! :-D) but I understand completely that being all shouty at things is just his way of coping with it all. He is worried about not being  supportive enough of me (he's been great!) but I also know that he's scared about me having an operation and scared of losing me, all totally understandable and one of the many reasons why I love him so much. He sometimes comes over as a bit grouchy but he's a great big softy inside! :-)

Yesterday was all about the practical me taking over and I did lots of preparation to make hospital bearable. I now have lots of soothing relaxation music and sounds on my Walkman, some good books to read and some of the little treats friends and family have given me, like lip balm, nice soap, pretty slippers etc. All little things that I hope will help. 

For when I get home I have had a splurge and treated myself to an Amazon Kindle which arrived yesterday. I am already in love (sad but true! :-D) with this lovely little gadget because being a book addict and having such a large collection of them already, it's very useful to have something that stores things electronically. Plus if I'm feeling tired or have problems with my right arm after surgery, it's light, easy to hold and read.

Now I am off to do my packing and then I am going to enjoy just sitting and reading to give myself a little bit of calm before the storm.

See you on the other side!

as the day draws nigh

I've got this awful sense of impending doom. It's mad really because this is an operation that is designed to help save my life. Nevertheless the thought of it all is frightening and that is because of the nature of the surgery, not the actual operation, after all it won't be the first time I've been in hospital.

Part of what bothers me most is how those around me are going to react when they first see me afterwards. My OH and I have had some talks about this but we both find it a difficult subject to broach, partly because it's such an emotive subject but also it's hard to find the right words. Over the years we've both found it easy to know what the other is feeling, which has helped a lot as we deal with me having cancer, but it is still so hard to just sit down and talk it all through even though we know we should.

It hasn't helped either that this week has been extraordinarily hard on the work front, with someone waiting to make a bid for my job just a few days before I have surgery, knowing that I'd be at my most vulnerable. Her actions are beneath contempt and shocking too because I believed her to be a friend and had recently supported her through difficult times. I feel very foolish now for trusting her and helping her when it has become obvious that in the background she was conniving to remove me from my job, whilst all the time pretending a friendship that was false. I just cannot believe that someone would be so ruthless to take advantage of a fellow human being when they are facing such a life-changing and frightening situation. But I suppose that some people just cannot resist the opportunity to put themselves first regardless of the cost to those around them.

I hate to do it but I have had to walk away from a job that I love and feel passionate about. I have more important things to focus on now and I am a firm believer in the old adage 'what goes around, comes around.' Focusing on preparing for going into hospital on Tuesday is what I need to do now!

On the subject of hospital - my surgeon is so kind; he has arranged for me to be admitted the afternoon before my surgery so that they can administer all my anti-seizure and vasculitis meds via IV rather than have me worry about when the right time was to take them on Wednesday. He didn't have to do this and it speaks volumes for the level of care the hospital offers, I feel very lucky to be looked after by him and his team. I also suspect that given my other medical conditions, he thought that having me under observation for a few hours in advance of surgery was a good idea, as they so rarely deal with a patient with my type of vasculitis. Even so I am very grateful for this added bit of care and attention, it helps make the whole thing a little easier to deal with. 

Meanwhile I have been basking in the warm glow of the love and friendship of those who genuinely care about me. I've been sent some lovely care packages in the shape of books, bathroom treats and flowers - these small gestures make such a difference at times like this! Best of all though is the final tracking down of the mythical beast that was a post-op bra in my size! All thanks to the wonderful staff in our local department store, who spent a considerable amount of time sorting this out for me! It just goes to show that it doesn't matter how 'Internet savvy' one is, there's nothing to beat good old fashioned face-to-face service!

swimming against the tide

When actually all I'm really doing is at best treading water. I have had a bad few days which started at the weekend when I met up with a lot of friends, many of whom I hadn't seen since well before I was diagnosed. Up until now much of my communication about what's happening has been using the written word but this was different; I had to say out loud "I have breast cancer" and was unprepared for the profound effect that would have both on me and those I said it too.

The upside was that I discovered just how much I mean to so many people and that they care a great deal about me, but the downside was that I found it a deeply emotional experience and as a result, very difficult to deal with. I was not prepared for this because I have managed to be very practical and matter-of-fact about it all so far, so suddenly finding myself in floods of tears and unable to face anyone a strange and unnerving position to be in.

Later on, when I was better able to face everyone, I then found that a lot of people admire me for being brave, but I don't feel brave at all. In fact inside I am scared about all of it; the operation itself, how I will feel afterwards, how it will affect those around me and the prospect of further treatment.

Being brave has nothing to with it all, it is merely a sense of having to deal with it and for the most part being unwilling to drown because that in itself is frightening.

Okay, that's enough of the water imagery for the moment! Let's move onto more practical things! See? that's how I deal with it all! :-D I am still on the hunt for the illusive, almost mythical beast that is a post-op bra in my size. Where are they all hiding, that's what I want to know.