Our chemo 5K!!!

This post is a little delayed as I've felt a bit rough over the last few days. I'm learning that the feeling rubbish bit of chemotherapy kicks in for me around day six. I've had a couple of days of feeling pretty tired and low and basically just wanting to stay in bed. You can't quite pinpoint exactly what it is that doesn't feel right. It's kind of everything. You just feel generally a bit shite. Bit floaty, sicky, headachy and low. A bit meh.

Anyway, back to something positive - we did it! We ran a 5 k race after our second chemotherapy treatment!

For those of you who know me, you'll know that running has been a big part of my life for the last two and a half years. I had recently started training for another half marathon when I was diagnosed with breast cancer. One of my first thoughts after my diagnosis was 'well there goes that idea'. I really struggled with the thought that one of the things this cancer would be robbing me of was the level of fitness that I had built up over the last couple of years.

Running is my way of coping with things. Some people turn to food, drunk or drugs but my way is running. Probably doesn't sound as fun though right? I continued running after my diagnosis and have kept it up since chemotherapy started. Its harder and I'm covering less distance but I'm still doing it. I made a deal with myself that no matter how unlike running I felt during my treatment I would make myself get out there, even for just a short one.

When I decided to enter the Big Fun Run 5K in Birmingham it seemed a little bit silly. The race was four days after my second chemotherapy treatment and I had no idea how it was going to affect me. I hadn't actually entered when I mentioned it to Sarah, my friend from the Younger Breast Cancer Network UK. The idea was met with her usual unfailing enthusiasm and we agreed to run it together and also to raise money for Breast Cancer Care and Cancer Research UK in the process. So our entries were made and the fundraising page created.

I'll be honest, it gave me a bit of a buzz. Well, a lot of one. It gave me something to focus on other than cancer and made me feel like I was doing something useful rather than being a massive burden to my family, friends and the National Health Service.

We completed the race in our pink tops and me with my new pink running hat to hide my chicken fluff stubble head - Sarah in 26 mins 30 secs and me in 25 minutes and 25 seconds (yes seems very fast but it was actually about 4.7K rather than 5K but lets not dwell on that bit!). Then we went and ate cake, which was well deserved I reckon!

We also featured in the Birmingham Post, although they got the distance massively wrong, and completed a bit of a photo shoot for the Birmingham Mail. The photos consisted of some very silly 'running' photos and catalogue type shoots of us grinning and staring off in to the distance. The story hasn't been featured yet but we'll let you know when it is!

We've been blown away by the generosity of the people we know and some that we don't. So far we've raised £1510 for Breast Cancer Care and Cancer Research - two fantastic charities. Breast Cancer Care have been fantastic since the point of my diagnosis by providing excellent information resources, a volunteer from their Some Like Me Service and also pointing me in the direction of the Younger Breast Cancer Network UK where Sarah and I met. We are also attending their Younger Women Together two day event this weekend, organised to provide information, support and networking opportunities for younger women with breast cancer. We are quite a rare breed and I don't know of another charity who provides the level of support and information for us that Breast Cancer Care does. Cancer Research UK save lives with the work that they do and they provide some pretty good information and resources too.

If you would like to donate to these fantastic causes you can still do so here.

Thank you again to everyone for the positivity and support that you've given us. It really does make all the difference. xxx

Chicken fluff stubble head

If you read my recent ranty post you’ll know that my hair had started to fall out. It was coming out at such a rate that when I went for my second chemotherapy treatment on Tuesday last week, the nurses told me not to bother with the cold cap again as I would only be putting myself through pain for no reason. The hair was making a run for it like a commitment-phobic boyfriend and nothing was bringing it back (at present). I cried about it in the middle of the ward as the day had already been a bit shitty but to be honest I also felt a bit of a sense of relief. The cold cap was so painful the first time that I really had been dreading it and at least the time spent in the chemo ward would be cut down – only the toxic chemicals to be pumped in to my veins this time and not a four hour brain freeze to go with it.


In a funny way it also relieved some of the hair anxiety. Now I knew that it would be going. All of it. No worry about how much was coming out on my pillow or finding it on the floor or in my food. So I made the decision to have my head shaved the next day. I rang the lovely Naomi at Trendco who asked me to come in the same day. Scary, but no point putting it off. The hair was going; it was just a matter of time. At least this way I could take a bit of control back over my own body – I would make the decision when the hair left my head and not the other way round.


I went in to Trendco in my wig and left in the wig. The difference was when I left was I only had patchy plucked chicken like stubble left under there instead of patchy longer bits of hair. It looked so bad when Naomi took the wig and cap off that I was desperate for her to get rid of it. I now have a very sexy chicken fluff stubble head. The stubble is about half an inch long and patchy with shiny head showing through so I can’t even go out and try and rock the bald headed stubble Jessie J look. I bought a sleep turban to wear in the house so that I don’t scare myself – or other people for that matter! However I have found it strangely liberating and it sounds like a cliché but it did make me feel I had regained a certain amount of control in the midst of one I have very, very little over.


It also very low maintenance – no shampoo and conditioner needed! The stubble is coming out thick and fast so I reckon it’ll be shiny bald soon but I’m getting used it. I’ve taken my chicken fluff stubble head out for a run a couple of times wearing a cap but the rest of the time I’m wearing a wig. I have another new one. She’s called Suki and she’s a beaut. It also makes getting ready time a lot shorter. A quick head wash, bit of make up, stick my hair on and I’m ready to go. Wearing a wig isn't the most comfortable of things however. I have to resist the urge to take it off and give my head a rub when I'm out and about. Gives a whole new meaning to the phrase 'keeping your hair on.....'.

Open letter to The Sun

Dear David Dinsmore,

I am writing this letter as follow up to one that my incredibly brave friend Sarah Perry sent to you. As yet, I don’t believe she has had a response from you.

I met Sarah through on online forum for younger women with breast cancer. I am 32 years old and I was diagnosed with breast cancer almost eight weeks ago. In fact, Sarah and I were diagnosed on the same day.

Today is Check ‘em Tuesday. It is also the day of my second chemotherapy session. I will spend over two hours having a combination of drugs injected into my body that will hopefully kill off my cancer. However, the drugs will kill off other fast growing cells within my body, and side effects include digestive problems. nausea, vomiting, hair loss, possible loss of fertility and increased risk of infection to name just a few. My months of chemotherapy sessions will be followed by surgery to remove part or all of my breast.

I have always been a supporter of the No More Page 3 campaign and feel that such an outdated, sexist feature has no place within a family newspaper. It tells women that their place and value in society depends on their age and looks and sends the message to men that women’s bodies are readily available for their consumption.

However, as a young woman whose body is about to undergo significant changes, of which some are temporary and some are permanent, due to the cancer in my body, I feel all the more strongly about your use of this disease as a way of justifying the continued existence of Page 3. I feel it is an insult to all women currently fighting the disease and those who have survived it to use this feature that has so long been there purely for the sexual titillation of men to promote ‘breast cancer awareness’. You have effectively sexualised this disease, which is as far from the reality as possible. It is a life changing, terrifying experience which involves gruelling treatment - a very long way from being ‘sexy’.

We know you understand the arguments against Page 3, Dave Dinsmore, and at heart you realise that it is an out dated institution. The No More Page 3 petition now has over 200,000 signatures and the campaign has support from an overwhelming amount of organisations and individuals. From the perspective of those who support the campaign, and are suffering through breast cancer treatment, it seems that linking Page 3 with breast cancer awareness is a last ditch attempt to try and justify its existence. After all, in theory who could argue with the promotion of breast cancer awareness? However, the use of topless models and the sexualisation of the disease is something that many others and I strongly disagree with. I find it abhorrent.

Let me make very clear that I have no issue at all with the charity Coppafeel and nothing written here is aimed at them. I was aware of Coppafeel long before your association with them, and I think Kristin Hallenga is an incredibly inspiring young woman. It was actually her story that persuaded me to go back to the doctors for the third time with the lump that I had found in my breast.

So perhaps instead of using topless models to promote breast cancer awareness, why not run stories on some of the incredibly brave women who are currently fighting breast cancer or who have survived it?  I can give you suggestions on where to start. The forum that I met Sarah Perry on has introduced me to some of the most wonderful, strongest young women I could ever have hoped to meet.

Raising awareness of breast cancer – how to check yourself, what to look for and not to be fobbed off by doctors when you find something concerning you is invaluable. All women need to learn this. I have learnt this the hard way.

I can’t help but feel that if you really cared about raising awareness of breast cancer, you would do it as a separate feature, without the involvement of Page 3. With this association, it feels that you have reduced breast cancer to a fluffy, sexy gimmick.

So please do carry on with your work with Coppafeel, however out of respect for the thousands of strong, brave women who have and have had breast cancer, please lift yourself and your publication out of the gutter, and leave the topless models out of it.

 Rebecca Swift


You can sign the No More Page 3 petition here.

Ranty McRant

Today's post is a bit ranty. I would apologise in advance but I think I'm allowed to have a rant now and then. I've tried to write this blog  so far without a 'feeling sorry for myself whingey whiny' tone but today has been a bit pants so please allow me to indulge myself this time!


I went to the hospital today for my pre-chemo bloods doing and cried because of how much it hurt. My chemo vein is very sore and I think it has hardened a bit as I can feel it under my skin. I've only had one session as well so I dread to think what it is going to be like after a couple more.


I have cording under my arm from my sentinel node biopsy which is painful and tight and I can feel the pulling sensation right down to my hand when I raise my arm. Its also very visible in my armpit which looks rank.


And despite using the cold cap my hair is falling out at an alarming rate. By the handful. I'm finding it all over the floor, on my shoulders, down my back, on my pillow....I'm like a moulting dog. I'm saving it as well. At least the hair that I can collect - the rest gets hoovered up or chucked in the bin. I have a 'hair bag'. Below is a photo of the contents so far. I think there is probably enough there to house a small family of sparrows.....

I had a bit of a cry about it this morning. Even though I know that hair loss is a guaranteed side effect of the treatment, I had hoped the cold cap would work. It still might. Although I have lost a considerable amount of hair now so I'm wondering whether its even worth bothering with the cold cap again if its going to carry on falling out at the rate it is.

Unless you've been through it yourself, I guess it must be difficult to understand exactly how it can affect someone. And in the grand scheme of things it might seem quite insignificant. So I just wanted to clear up a few things about hair loss due to chemotherapy:

1. Losing your hair as a result of chemotherapy is a process. You don't just got to bed one evening and wake up with a perfectly shaved head. You wake up each morning and check the amount of hair that is on your pillow. You check your scalp for evidence of thinning and bald patches. You're scared to brush your hair due the extraordinary amount left on the brush after just a few strokes. The thought of washing it is terrifying as you picture most of it ending up down the plug hole. Its a incredibly visual reminder of how ill you are and what is happening to your body. Each clump of hair that falls out is another part of your femininity being taken away by this horrible disease. It might be 'only hair' but Its traumatic, upsetting and utterly shit.

2. Hair loss has got nothing to do with how effective the chemotherapy is or if it's 'working'. I'm having chemotherapy to try and shrink the tumour in my breast - or in the best case scenario get rid of it completely. The hair loss is an inevitable part of treatment (unless the cold cap works). It would happen regardless of how effective the chemotherapy was. The only way I will know if the chemotherapy is 'working' is if my tumour shrinks. The hair loss has no correlation with this whatsoever.

3. I do have very nice wigs. However, wearing a wig is not the same as having your own hair. Period. Wigs can be hot, itchy and annoying. And when you get home and take it off, you are still bald underneath. Simple as that. I can't just stick a wig on to go for a run. That would be incredibly sweaty. I'm not going to sit around the house in my wig. I will still have to look in the mirror and see myself with no hair. My friends and family will see me with no hair. As someone who takes great pride in their appearance, I find the thought of that incredibly upsetting. I also worry about the effect that that may have on those who care about me. I think perhaps sometimes its easier for people to deal with when this illness isn't immediately visible or evident. I keep having people tell me how 'well' I look. But once the hair is gone that might be a different story. Its going to take some getting used to.


4. The hair loss is another reminder of the lack of control I have over my own body right now. I haven't chosen any of this. I haven't chosen to have cancer, to spend months going through gruelling treatment, to have the horrid side effects, to have my life put on hold, to be in a constant state of anxiety and fear. As I've said before, the hair loss is visible, obvious reminder of the totally unwanted and unexpected shit that has been thrown at me.
5. It will grow back yes. But I will have to spend around 4 months bald or with bum fluff on my head. Hair grows at about half an inch per month. My hair now is about 7 inches long. Before I had it cut in to a bob it was about 16 inches long. Work that one out.


6. I am not going to be like Jessie J or Sinead O'Connor or any other shaven headed female celebrity you can pull out of the bag. Jessie J chose to shave her hair off. I don't have a choice in this. She also has eyebrows and eyelashes. I'm hoping mine cling on as long as possible but who knows? She also had a head of stubble. You don't keep stubble when you lose your hair due to chemotherapy. You go bald. Completely bald. Shiny headed bald. Even stubble falls out. Bald.


So there we have it. My ranty post about hair loss. Yes, its not the biggest thing I have to deal with right now. But its still shite. And its not all gone yet. Maybe some of it will cling on. But as I said its falling out at an alarming rate. I think I need to be realistic about the fact that there may be a point where I need to make a decision about trying to keep it or just getting the clippers on it. But hey - it's only hair right?

Hotel Hospital

N.B. This post was written on the 1st of September.


So I spent last night in hospital. Started with a raging sore throat that got worse over the space of an hour so ended up calling the ‘helpline’ who told me to go to A and E. Oh joy. When your white blood cell levels dip too low during your chemotherapy cycle, it’s called being neutropenic and apparently a sore throat can be a sign of that.


So, off we trot to the hospital. I flashed my ‘chemo card’ - the VIP membership for a club no one wants to be in in – and got whisked through away from all the infectious people. It still means you have to wait for ages unfortunately, just not where people are coughing and spluttering. So, after a protracted wait in a cubicle listening to the melodious sounds of A and E, I’m told they want to keep me in for observation.


Turns out when you’re having chemo you get your own room yey! Like a really shit Travelodge. And I’ve stayed in a few of those!! But no tea making facilities sadly. Luckily I had my ‘hospital bag’ all packed and ready to go but had forgotten the most important thing –ear plugs! So what with that and the intermittent visits by doctors and nurses sleep was not forthcoming. But in the morning, after more poking and prodding and a chest x-ray (and some very cold, chewy toast) I was set free. Who’d have thought a sore throat would be a reason for a hospital stay? Welcome to the world of chemo!

 

FEC-ing hell! - Number 1

So my chemotherapy regimen is what is affectionately called FEC-T and will consist of three session of FEC and three session of Taxotere in 3 week cycles, providing all goes to plan. The plan is to shrink the tumour so that only part and not my entire breast need to be removed.

I had my first session of FEC on the 26^th of August and I can safely say I was terrified. I had a session with a chemotherapy nurse the week before, where I was read the chemo riot act – i.e. when to call the hotline, what is classed an emergency, what side effects to expect etc. However, she was really lovely and it sounds as though I was quite lucky. My friend’s chemo info session has consisted of a PowerPoint session in front of a group of people, smattered with the words ‘emergency’ ‘fatal’ and ‘life threatening’. Nice.

The nurse basically told me to carry on as normal. When I asked if I could still have a glass of wine (the important things!) she said ‘of course – you can even go for a night out down Broad Street if you want to’. Not sure what’s more terrifying – chemotherapy or a night on Broad Street!

The oncology waiting room was full due to the bank holiday the day before – those who would have had their session the previous day were all shoved to the Tuesday. Yes folks, whilst most people were enjoying their bank holiday, perhaps having a trip to the seaside or on all dayer down the pub I was crapping myself about having a toxic cocktail of chemicals pumped in to my veins.

As usual, my presence in the oncology waiting room brought down the mean age somewhat. We sat and waited. And waited. And waited. I had an appointment to see the oncologist before starting chemotherapy, mainly to ask about the results of my sentinel node biopsy. By the time we finally went in to the oncologist’s room I was once again doing my Peter Barlow impression. Cue very sweaty palms.

The waiting part, as most women in the same position as me, will attest is extremely difficult. At the moment, time just seems to be filled with endless hospital appointments, tests and waiting for results. It turns out there was a tiny bit of cancer in the first node they removed and none in the other three. Not exactly the news I wanted to hear – no node involvement would have been preferable. But the oncologist was unconcerned and told me it would just slightly alter the surgery they planned to do after the chemotherapy.

After giving me the go ahead to take some diazepam whilst I sat and did some more waiting, I downed two and sat in the waiting room eventually feeling a little calmer as they kicked in (yey for diazepam). Finally, after about four hours since arriving at the hospital, I was called through to the chemo unit to get the ball rolling (or the drugs flowing).

The chemo nurses are remarkably cheerful considering they spend the day injecting toxic drugs in to poorly sick people. I was given a lovely seat next to the window looking out on to the garden. After putting the cannula in one of the veins on my hand which had to be coaxed out using a heat pad, we set about drenching my hair in water and conditioner ready for the cold cap. I had my hair cut off in to a bob to reduce the weight on my follicles and tried slightly unsuccessfully to get it closer to its natural colour as in the event of my keeping my hair, you can't dye it whilst having chemotherapy and I wasn't looking forward to having dreadful roots on show. When you are using the cold cap, you have to sit for half an hour before they start injecting the epirubicin (the E out of FEC) which is the one that makes you lose your hair, during the time it's being administrated and for two hours after. So it extends the time you have to be at the chemo unit for but it's worth a shot. They strap on this very fetching pink cap that looks like you are about to jump on a horse for a gallop and then switch the machine on. I have heard it described as a prolonged brain freeze and the first 20 minutes are the hardest but to persevere.

Without wanting to put anyone off who is thinking of using the cold cap, the first half an hour was excruciating. I desperately tried to distract myself by playing a game on my I pad but all I could think about was shouting to the nurses to take the damn thing off my head! It took all my strength and the thought of a bald head not to. After about half an hour I began to get used the sensation although the rest of me became incredibly cold! I did take my slanket though. First time I’ve actually found a use for it! Next time I'm kitting myself out with scarf, gloves, socks the works!!

After the epirubicin comes the next two drugs – the fluorouracil and the cyclophosphamide. The remarkably cheerful chemo nurse explained to me every time the next toxic drug was about to be injected in to my veins. Due to our late admittance to the unit and the fact that I had at least an hour still to go with the cold cap once the drugs had finished being injected, we were the last ones there with the cleaner mopping up around us. It felt a bit like being a pub at closing time only without the massive meathead bouncer stomping round shouting 'finish your drinks folks'. Once the cold cap was done I had to sit for ten minutes to wait for my head to defrost (I'm not joking) then I ran for a pee. Although I had been warned that the epirubicin turns your wee pink for a little while it was still a bit of a shock to turn round and see rose wine coloured pee in the loo. It seems to be a regular occurrence at the minute to have pee looking like sickly alcoholic drinks. I'm gradually forming a list of booze I can never quite look at in huge same way again. Sigh.

So, I was sent home with a huge goody bag. Unfortunately it wasn’t filled with birthday cake and party hats, but various different anti-sickness medications, steroids and bottles of Difflam mouthwash (awesome stuff). In the same way I would to try and stave off a hangover, glugged a large amount of water over the next couple of hours as I'd heard this would help flush the drugs out and minimise any side effects. Apart from feeling quite nauseous over the evening I was ok - not vomiting yey! I cleaned the toilet though in advance just in case I would end up having my head down it.

Since then I’ve mostly just had this weird floaty feeling occasionally, a bit of a sore mouth, which was sorted by the Difflam, and feeling a bit tired. I’ve still been running but its felt a little more difficult. Oh, and I did get a stinker of a cold which led to me being in hospital for a night whilst they checked me out. The Canxiety has hit now and again but I’m trying to learn to control it with the help of my friend citalopram. Round about now is the time I’d expect my hair to start falling out if the cold cap hasn’t worked. But it’s still there so far although it feels like there are more hairs in my brush than normal. But FEC it! Bring on the next one!!

Getting wiggy with it

The chemotherapy drugs given to treat breast cancer make you lose your hair. Yes folks, they don’t use the same drugs to treat every single type of cancer! The thought of losing my hair terrifies me. Sounds stupid doesn't it in the midst of everything else I am dealing with, but I definitely agree with what other women have said - that losing your hair can be of the most traumatic parts of breast cancer treatment. It’s easy to say ‘well, its only hair right?’ and that’s true, but it’s just another reminder that things are no longer ‘normal’. It’s a constant visual reminder of your illness and the severity of it. Long flowing hair symbolises femininity, and it another part of being a woman that’s being stolen by this disease.


Anyway, I am going to try to the cold cap (or scalp cooling) which essentially freezes your head whilst they are administrating the cocktail of poisons that is supposed to make me better. Apparently, it reduces the damage that the chemotherapy drugs do to the hair follicles, therefore meaning that you manage to hang on to at least some of your hair. However, it apparently only works about 50% of the time, it can be excruciating (like a four hour long brain freeze) and you can still lose a considerable amount of hair. And you can’t actually do anything with the hair that sticks around i.e. no straighteners, hair dryers etc. – even washing it is a bit of a no no. Anything that puts any sort of friction or stress on the hair and its follicles. I am going to give it a go, but faced with the prospect of being left with a greasy, flyaway comb-over, I’ve also decided to get a wig or two.


So, I went to try on some wigs, with a view to buying one and it was awful. I’d picked up a book from a high street wig and hair extension shop a few days before and spent some time looking and that and on their website, marvelling at how natural and ‘real’ they looked. So off I went today, rather naively, thinking I’d go in pick my favourite style and skip off feeling like Beyoncé.

I picked a couple of styles that I though looked great on the faceless plastic heads in the shop, but once they were on my head I changed my mind. I looked like me in a wig. As simple as that. There was too much hair and it seemed to shine rather synthetically under the harsh lights over the mirror in the little ‘hide the shame’ booth at the back of the shop.

After trying three on I couldn’t face anymore so ended up in tears, ripping the third wig off my head and leaving the shop and the poor young lady who was helping me rather uncomfortable and not knowing what to do. Then I went and had a massive cry in the toilets of the shopping centre screaming about how I could never, ever wear one of those and how was I never going to be able to leave the house during treatment. Unexpected entertainment for those stopping off for a pee.

On reflection, I’m not really sure what I expected. I’ve spent a lot of time looking at wigs and using it as a distraction – ‘now’s the time to have the hair I’ve always wanted!’ I guess it was a mixture of shock and disappointment and yet another reminder of the crap my body is going to go through over the next few months.

I’m hopefully off to another shop this week and fingers crossed I do end up feeling like Beyoncé after this visit rather than Dame Edna Everage!

Update

Yey I have wigs! I went to Trendco in Birmingham (who I thoroughly recommend) with two of my lovely friends and purchased two wigs, one fibre and one real hair – in two different styles. One is called Hailey and the other Garnet. The real hair one is for when I can actually be bothered to style my hair and the other one is for ‘can’t be bothered, feeling a bit pants’ days. The price altogether was slightly eye-watering (ok, very) but at least I don’t have to pay VAT on them as I’m buying for ‘medical’ reasons. Both give me more hair than I am used to so takes a while getting used to looking at myself in the mirror! I’m going to try giving them days out gradually whilst I still have my own hair so that I don’t feel quite so self-conscious in the event that wearing a wig becomes necessary to stop people (and me)freaking out at my shiny egg head.

Node Nonsense

N.B: This post was written in August

So as I’m having chemotherapy before my surgery, they need to take out a few of the nodes closest to the breast to check for cancer spread (eeek). This is called a sentinel lymph node biopsy. If was having surgery first they would remove these nodes at the same time. The word biopsy gave me a false sense of security that made me think it would be a half hour job like the biopsy on my breast lump and off I trot. Wrong.

I was planning to try and have a small holiday before it all kicked off, however when the softly spoken consultant told me I’d need to have an op three days after the appointment I had with her, that put paid to that. It’s a day case op with a general anaesthetic where they cut through muscle and nerves under your arm to get to the nodes, remove them and examine them under a microscope. Not quite the biopsy I had in mind.

So the day of the op I had to be there at 7.30am even though I wasn’t being operated on until the afternoon. The highlight of my morning was having to go and have a radioactive substance injected in to my boob which really bloody hurt! And it didn’t turn me in to Spiderman either. Bah!

At least I had a bed allocated which means somehow I managed to drop off for half an hour but then spent the rest of the morning getting progressively more anxious. I have a real fear of general anaesthetic. The time spent waiting to be operated on compounded this fear so by the time they came to get me I was in such a state I almost made a run for it. Wouldn’t have been the best in my sexy hospital gown and paper knickers.

When you’re under the anaesthetic, they inject a blue dye in to the breast (yes, yet another injection in to my boob) which along with the radioactive substance injected earlier, helps them to trace the nodes they need to take out. One of the side effects of this blue dye is that it leaves you with a fetching grey tinge for a few hours after the op, but also with smurf-like wee that looks like blue WKD for a few days. Not that I’m a fan a WKD anyway, but don’t think I will look at the stuff in quite the same way again. For the few days after the op I had an overwhelming urge to take a photo of my wee and send it to people, so impressed was I, however I thought it might be bridge too far. The dye also leaves you with an area of blue stain on the breast – a blue tit! Boom, boom.

Anyway, they took four nodes out so now is just the wait for the results.  A regular feature at present!

Update - September

So apparently when you remove even a few nodes, the fluid that would have been passing through them has a bit of a panic and doesn’t know where to go so kind of hangs around. So I have what is called a ‘seroma’ the size of a tennis ball under my arm. Yey! With a gnarly scar across it. Pretty. Nurses wouldn’t go anywhere near it with a needle in case it got infected and delayed the start of my chemotherapy so I have to wait for it to ‘re-absorb’. It’s bloody painful! Especially when I had to go for yet another biopsy and boob squash. Not the most pleasant experience I can tell you!

Support and Superwomen

So I’d like to give this next post a slightly different flavour and focus on some of the positives (yes, you read that right) since my diagnosis of breast cancer.

One of the first things I did after my diagnosis was tell as many people as I possible. I know that not everyone deals with it like that, but I just wanted it out of the way. I felt there no way I could just pretend that everything was ok and hide it from everyone around me. In my head I now had a massive neon pink sign (yes pink – it’s the colour of breast cancer don’t you know?) above my head pointed at me saying ‘person with cancer right here’.

I had some lovely, supportive responses and have continued to receive lovely kind messages since then from a number of those people. I’ve had offers of help and displays of kindness from some unexpected sources.

Two days after my diagnosis, I decided last minute to run the Race for Life, which was an incredibly hard thing to do. It was only 5k which is a very easy distance for me physically but the emotional toll was far worse. I will admit a few tears were shed before the race began. I received some incredibly generous donations from people for my efforts, all of which go to Cancer Research UK, an organisation that works continuously to find new and pioneering treatments for cancers like mine.

I’ve had some frank conversations with friends about how much support I’m likely to need over the next few months. I very rarely ask for anything from people, both emotionally and practically, so this is going to be very hard for me. But luckily, I have some amazing friends who I trust to be there for me at the hardest time of my life.

One of the first things I did when I was diagnosed, was call Breast Cancer Care who run a service called Someone Like Me. They can put you in touch with a volunteer who is a few years down the line since their diagnosis, but in a similar position to you. Within a couple of hours I had a call from a volunteer who was diagnosed when she was 30 (she is 34 now) and had an incredible frank and open conversation with her which made me feel so much better (well as much as I could do at that time). She now rings me regularly and it is so helpful to discuss what I’m going through with someone who has been there and has come out the other side.

She also mentioned a network on Facebook for younger women with breast cancerFacebook network for younger women with breast cancer. Yes! Facebook is actually good for more than just repeated updates about what you’ve had for dinner, your child’s toilet habits and photos of drunken nights out! The network has over a 1000 members now and is quite possibly the best thing I have ever found on the internet. Until now, I have never appreciated how wonderful women are and the strength and support that they can provide. These women are all at different stages of their journey – at diagnosis, active treatment and beyond and are going through some awful times but still have the time and energy to speak to others about their fears and concerns.

I recently met up with a member of the network I had been talking to for a while, an incredibly brave lady (she won’t like me saying that!) who was diagnosed on the same day as me. It was wonderful to meet her, albeit only for an hour before she went wig shopping. However, I had a massive anxiety attack and ended up throwing up all my tea and cake outside the café. But if anyone is going to understand it’s her right? This is the beauty of that network. There is no judgement, no concern or question is too silly or too small and there is always someone there to talk to day or night. They truly are Superwomen and I am so, so grateful that I have found them.

Feeling the Fear (and other things)

NB: I wrote this post 2 or 3 weeks ago closer to my diagnosis so it may sound very bitter in places! Just putting that out there....

There are a whole lot of feelings and emotions after a cancer diagnosis. For want of a better description (yes, I’m falling back on clichés again) it’s a rollercoaster. Just not as fun. Although, considering my absolute fear of heights and strong aversion to rollercoasters, perhaps it’s slightly comparable. It’s also exhausting. Like a rollercoaster you have to peddle yourself. Despite having one of the most serious illnesses around, I don’t feel ill (although this will be very different once treatment starts!). I just feel exhausted. Mainly due to the insomnia and this sodding pedalo rollercoaster.

I’ve tried my best to expand on this rollercoaster below:

Fear

This is probably the overriding emotion right now – The Fear. It ranges from moments of total abject terror to an ever present level of anxiety. Let’s call this Canxiety (see what I did there??). I’ve always been an anxious person, only now I really have something to be anxious about! This Canxiety is ever present at varying levels and quite regularly stops me sleeping even though I’m bloody knackered what with pedalling this bloody rollercoaster.

The moments of total terror hit when they just feel like it really. The most recent one was in the middle of a restaurant when I burst in to tears and just kept thinking ‘I’m going to die aren’t I? This thing is going to kill me’.

They quite often also hit in the middle of the night, leaving me wide awake at three in the morning with my own mortality staring me in the face like some effing terrifying poltergeist.

The Fear is there constantly, all the time. It never ever goes away. I wake up in the morning and the first thing that enters my head is ‘I’ve got cancer. Sh*t. I‘ve got cancer’. It’s the last thing in my head before I got to sleep (although sleep is not that forthcoming right now!). It’s there all the time, ever present, with depressing and anxiety inducing thoughts running through my head like some demonic sodding hamster on its wheel (my brother used to have one of these – its eyes glowed red and made the most awful noise like an animal possessed.)

Every so often I’m also stopped short by the thought that this thing is still in my body. This unwelcome lumpy guest, this invader. My initial reaction was to fall at the consultant’s feet and beg for them to cut it out there and then. I wanted to take a knife and hack off my own boob. I still feel like that sometimes (cue the hiding of the kitchen knives).

I’ve started having panic attacks too. They hit when I least expect them. I won’t even really be thinking about it too much. Then my head starts swimming, I start panicking and I can’t breathe. I also get the shakes and look remarkably like Peter Barlow currently does on Coronation Street. They go off. Eventually. 

Everyone is going to die right? But it’s not something you dwell on every day, all the time, hanging over your shoulder like a rather possessive and clingy boyfriend (unless you’re a Goth, I guess). Unless you’ve been given a cancer diagnosis. Then its massive slap in the face, a huge screaming wake up call, it invades your thoughts all the sodding time. And as I said, it’s bloody exhausting.

 Guilt

I feel guilty. A lot. This diagnosis doesn’t just affect me, it affects everyone around me. I feel guilty that at least for a few months I’m probably going to be taking a lot more from my friends and people who care about me than I can possibly give back. I feel guilty that I am going to have to take people up on those offers of ‘if there is anything I can do please just let me know’. For someone who rarely reaches out to anyone for anything, this is going to be incredibly difficult. I feel guilty that I’m not going to be the same person I was before all this shit and worried that people around me are going to get fed up and walk away.

I feel guilty about what this is doing to my parents. How I can see my mum’s heart breaking and can’t do anything to make it better. At no point did I ever envisage this happening. My parents are old age pensioners, my dad's almost 70 years old for Christ’s sake. I should be the one looking after them at this stage in their lives. Yet here we are, with my mum driving up and down the M1 on a regular basis to ferry me to and from my plethora of hospital appointments. It’s not dignified having to have your mum shower you and wash your hair at 32 years old because you can’t move your arm as someone’s had a good old dig in there and pulled out some of your lymph nodes (more about this later). And that’s only the tip of the iceberg. There is a lot, lot more of this type of thing to come and letting go of the guilt is going to be very, very difficult.

 Anger

I used to be quite an angry person, although I‘ve mellowed a bit as I’ve got older. But cancer turns you in a massive green incredible hulk. I’m angry right now. You probably wouldn’t like me when I’m angry. But tough titty!

I’m angry about the injustice of it all. At the risk of sounding like Harry Enfield’s Kevin, it is SO UNFAIR!!

I’m 32 years old. I should be thinking about how I can climb that next rung on the career ladder, worrying about how I’m never, ever going to be able scrape the deposit together to buy a property by myself, ranting about the fact that so and so in the office never washes their own cups up, getting excited over the next date with someone a bit special, pondering over whether the outfit I’ve chosen for Friday is a little too over the top for our chosen venue or spying on my ex-boyfriends profiles on Facebook and wondering if that girl he’s just added is his new ‘love interest’ (this is all hypothetical, by the way). I should be having those moments of pondering the nature of existence in a first world problems kind of way – e.g. is this all there is to it? Should I pack it all in and do a belated backpack around the world thing? Or volunteer in some deprived country to help people worse off than myself? Blah, blah, blah. Instead, I’m facing months of gruelling treatment, illness, uncertainty, fear and essentially a fight for my life.  At 32 years old. And it’s so, so unfair.

I’m angry at people around me saying and doing the wrong things. I know this is harsh and irrational and cancer is not an everyday occurrence so no one knows really what to say or do when faced with it. I know I wouldn’t have if it was someone else close to me in the same position. But really, I don’t feel like I have the energy to deal with other people’s inadequacies right now. And people who know better than me. That’s really annoying. ‘Well, how do you know you’re going to lose your hair? So and so had chemotherapy and they didn’t lose their hair’. Trust me, I know. I’ve sat up hours and hours reading and talking to other people in the same position. I didn’t just get handed this diagnosis and skip off in to the sunset with the intention of staying in a state of blissful ignorance. Although, I am going to stick a caveat on this and say that I also have a lot of lovely people around me who have been just fabulous and supportive.

I’m angry at life just going on around me when I’m stuck coping with this shit. I’m angry at people who still have normal, cancer free lives. Angry at people posting on Facebook about what holiday they’ve just booked, or what a fabulous time they are having with their BFF at so-and-so’s wedding, or how many weights they’ve just managed to lift or how fucking tired they are. Yes, I know is more irrational, unfair anger but you know what? Life isn’t fair. If there was ever a time when I should be allowed to have stupid, nonsensical, being mad at things I shouldn’t be moments, then this is it.

I’m angry at the doctors who sent me away last year. I’m angry at myself for trusting them and not pushing to be sent for further tests. My consultant says she doesn’t think the lump has been there for a year as she would expect it to be bigger, but that really we won’t ever know. This bad boy doesn’t always do what you expect it to. According to my oncologist, tumours can be growing for up to 8 years before you actually feel them. Shiiiiiiiiiitttt!!

I’m angry at stupid bloody ‘breast cancer awareness’ games on sodding Facebook. Really? How is posting cryptic statuses about using your boobs getting you out of speeding tickets supposed to raise awareness of breast cancer? Maybe I should respond with ‘well at least one of yours isn’t trying to kill you’. What a load of effing toss. Donate to Cancer Research or spend 10 minutes checking your boobs whilst you’re laid in bed this evening and text your friends to remind them to do the same if you really care about breast cancer awareness. Don’t sit there using it as it gimmick to play silly, vacuous games with your mates on Facebook.

I’m angry about what this bastard disease has already taken away from me and what it may take away from me. My health, my fitness, relationships, friendships, possibly my fertility, my social life, my hair …… my future as I saw it.

Cancer is a bitch. Its sneaks in and f*cks everything up. It steals all your plans and the way you saw things panning out. It creeps up behind you and rugby tackles you to the ground. And then give you a well-aimed kick in the head for good measure. I’ve had many ‘why me?’ moments. ‘What did it do to deserve this?’ etc. etc. I haven’t always looked after my health the best I could have (I was a university student, come on! I lived off pints of snakebite and black and Super Noodles), but ironically my diagnosis has come at a time when I am the fittest I‘ve ever been. I stopped smoking and started running two years ago. I ran a number of races last year, including two half marathons. I recently smashed by PB for the 10k distance. I run about 5-6 times a week. I can’t remember the last time I had a cold. I have so much more energy than I used to. Cancer isn’t picky. It’s completely indiscriminate. It doesn’t care who you are, where you’re from or what you did. Bit like the Backstreet Boys, only considerably more lethal.