Monthly Archives: February 2016

You are so Brave (And other Fairytales)

Tomorrow my  Chemo starts – There are several things seriously wrong with that sentence.

Firstly MY chemo? – Im 34, I have MY gorgeous dresses, and MY beautiful babies, and MY somewhat excessive art stash …I should not have My Chemo, My cancer, My survival rate… these are belongings I do not want

Secondly Tomorrow – It cant be tomorrow, Im not sure im ready for this.

People have been so lovely to me over the last few months, lovely cards and gifts and hugs. Several people have said.. “You are so Brave”

But no, Im really not!

As I sit here tonight I don’t feel brave.. in all honesty I’m terrified. Tomorrow they will fill my body with toxicity. Stuff that although it will hopefully attack the cancer cells also has the potential to cause some pretty crappy side effects

I’m not ready for my life to be reduced to how I feel, if I’m throwing up, if I’ve got infection, if I’m exhausted. I don’t want to feel crappy for most of the cycle.

And as for personal changes – hell no! I never thought I was particularly vain..but the last 6 months or so I have become really comfortable in my own skin, I’m happy with my style, I feel me again. .yet in a few weeks I will probably start losing my hair.. not just on my head. .but my eyebrows, my eyelashes. How am I supposed to feel comfortable with that? Then my breasts too..ok so they are trying to kill me so right now they arent my favourite things. .and yes I know reconstruction is an option..but can you imagine the thought of not only looking so different but then coming to terms with losing a huge part of what makes me me?

I’m not ready, I’m not ready at all. I know it has to be done, and without being dramatic I also know my life depends on it. Dr Proctor sent through my oncology report today, the main lymph node lump is 6cm+ .. that feels huge.. I mean I knew it was, it looks huge but still.

Today was the first day I had it actually in front of me in black and white, the sizes of the tumours, the amount of them? The word “metasised”… “invasive”….

The treatment plan is there too.. simple and to the point – chemotherapy, bi lateral mastectomy, radiotherapy, hormone therapy, ovarian suppressant and removal. Shit..

That’s a lot, I know it’s needed and I would do it all through 100 times over if that’s what it took but tonight it’s just too scary. For me…for my future.. for my babies.

I don’t want them to see me ill, yet to be in their lives as long as I can be it has to happen.

Someone asked me if I was angry, not angry .. there is no one to be angry with but tonight I am terrified, and anxious, and a million other things that I can’t even put into words.

As I lay here in bed, the two youngest babies co-sleeping beside me all I can do is cry. Its not a pretty sight, my earlier perfect on point 50s eyeliner flicks now making their way down my face. I suppose I should be greatful i haven’t lost my hair yet, otherwise I would bear more than a passing resemblance to Uncle Fester.

I’m not brave, I’m doing this cos I have no choice. Tomorrow I will put on my big girl pants (trust me they ARE huge) and I’ll get on with this with a smile, gorgeous dress and a kick ass attitude.

But tonight – just for a little while – whilst I lay here in the quiet I’m going to allow myself to cry, to be totally shit scared and to feel very very sad.

Come join my pity party…and bring vodka…and cake

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Pre chemo assessment

So this is the week it all starts.

I was given a 9am appointment at the Oncology department for my pre chemo assesment.

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One bonus of the cancer waiting rooms and consulting rooms is comfort! Its all free tea and coffee and comfy sofas up here you know.  So my day started with a cup of tea (in a China cup no less!) And some biscuits whilst we went through everything I needed to know before my treatment starts. 

The Oncology nurse went through some basic questions. My contact details, my next of kin, any medications I am on etc. The questions then went onto current medical state – mobility, speech, toileting, nutrition and what not. This is to make sure that we can record any changes that come about from the chemo itself. 

The nurse explains I will be given a diary to record side effects.  She says sometimes it’s very easy to merge days and not know if it was 2 days of sickness or 10 .. so it’s important to keep a record so that they can help me manage the side effects. 

I am given a card to carry. If I present at casualty or elsewhere I am to tell them I am undergoing active treatment.  She also tells me I must take my temperature regularly, and ring them if it goes above 37.5 – it seems all a bit over cautious to me.. That’s not a huge fever? But she explains that my immune system will be useless and even the smallest infection can be dangerous.

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We discuss emotional and practical support,  do I have someone who can take me to hospital if needed and someone who can bring me to and fro chemo. I was a bit shocked .. I had assumed I would be ok to take myself?

She runs back through the side effects,  yes I’m going to be feeling rubbish. The drug combination causes mouth ulcers too. She explains that they can prescribe things to help with the side effects if needed and I will be given a bag full of “just in case” medicines

She takes me on a tour of the unit. There is a few private rooms and then a general ward like room with reclining chairs instead of beds. She says I can be in a private area if I so wish. She explains I will be given food and drink whilst I am there.

First off will be siting the line for the drugs. Then they will give me anti sickness drugs, followed by steroids.  Once that’s done then the two drugs that form the treatment will be given.  Apparently they can be dangerous if they breach the veins and cause tissue damage so they are put into the vein by a nurse by syringe.

This however does mean that all thoughts of quiet knitting time are shot! I will have to keep one hand still hmm I can still paint or journal I suppose.

The nurse says that they may decide to put in a PICC line after a few treatments. This is a line that goes in the top of my arm and stays there until I have finished active treatment.

The consultant was originally not going to do this as both arms could be used, but recently an injury (I got my affected arm stuck in a letterbox…don’t ask!) Caused huge amounts of pain and swelling and they don’t feel that is worth the risk again. 

I’m sent for more bloods and a urine test. I will have to repeat this process the day before the chemo treatment each time. Its to make sure that my body is healthy enough to proceed.

Ironic really, if it was healthy we wouldn’t be doing this.

The nurse looks at previous bloods and frowns… oh she says we might need to book you in for a blood transfusion soon too, your iron is very low. 

Hold up! A blood transfusion. . That’s a bit drastic isn’t it. I know my iron is low..always has been, I also have ridiculously heavy periods which doesn’t help.  Even spatone liquid iron couldn’t raise it, I assumed they would just chuck some of the old ferrous sulphate my way and bobs your uncle. Apparently not..because I have cancer. .and am now an active chemo patient …and that makes stuff way more holby city worthy. Im not even allowed to take vitamins! Not that i was going to like.. id probably buy them, take one or two, forget for a few days.. take another when I saw them on the kitchen side.. then forget again. .but that’s how everyone takes them isn’t it? So no vitamins, no iron .. straight in with the serious stuff. Blimey.

I finish my biscuits and  thats that  – all booked in for Friday at 10.

Shit.

Appointment made and Results are IN!

I got a phone call Monday saying that they had made me an appointment to see Dr Proctor the oncologist, Friday at 1.40.

Shit this is all a bit real now. Its not that I had ignored Chemotherapy. I knew it was coming at some point, but I guess I had concentrated on dealing with surgery first. Dealing with the changes to my body arising from that.

Chemo treatment makes it all feel a bit more real, more serious somehow? I wont lie I’m absolutely terrified. I don’t know how ill I’m going to feel, I don’t know how the children will react to my hair loss… I don’t know how I will react to my hair loss.

I have just got to a place in my life where I am happy with how I look, and this is all about to change. Its all very raw today. I had some vintage pin up photos taken in October and have been waiting since then for the USB.

The studio have been making one excuse after another, and then ignoring messages until I finally threatened court action. Then they confirmed that the photos were “lost” “destroyed” “corrupted” – I don’t know which,  the story changed every time they talk to me, but it all boils down to the same thing – the photos of me before I became a cancer patient are no more (and so is the money I paid but that’s a different matter!)

They offered another shoot – as if I would trust them now – but its not just that, so much has changed, I’m not even that person now.

When I did that shoot I was confident, bold, looking forward to new challenges in the year ahead. I loved the way I looked. Now?…  my hair is short ready for it to fall out, my arms are bruised from cannulas and bloods, I have 2 visible tumours under my arm, several biopsy wounds – and I can smile – but it doesn’t hide how absolutely terrified I am and how any minute I could burst into tears. Yet they cant understand why a new shoot “doesn’t work for me”

I filed with small claims court, and contacted the media. Will fight as much as I am able but nothing can replace those images. I am devastated.

The week brings further news when Carol rings whilst I am at Jakes Coeliac appointment. She asks if I am happy to get results over the phone. I ask her to wait 2 seconds as I am just paying for something in the hospital shop – so she suggests I come up to the unit.

Once settled in a side room, she says that the biopsy results are back and that the benign lump in fact is not.

Its Grade 3 Invasive Ductual Carcinoma.

Finally we have a primary site. I’m pleased – and I know that sounds strange – but finally we have a primary site. I don’t have to wonder where its hiding. She talks to me again about chemo first and how it makes sense and I agree, I’m keen to get started – to feel like I’m doing something to fight it you know?

I’m Nervous about the Oncologists appointment tomorrow but its a step closer to getting better

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The Oncology Appointment

Today was the day.

The appointment with the oncologist. I won’t lie I was terrified.

This is all new, I don’t know how it works, I don’t know what will happen. 

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I know my BCN isn’t available today but she was arranging for another to be there, and it was Lizzie – I met her before so it was nice to see a friendly face.

Dr proctor was lovely. He put me at ease straight away. He said they all nice there.. reckons breast cancer care attracts a certain nice grade of people.

He started by explaining to me the type of chemotherapy.  There are various different forms – different combinations of drugs. I am having EC…

Epirubicin (a red fluid), which is given by injection directly into your vein, along with a drip (infusion) to flush it through
Cyclophosphamide (a colourless fluid), which is given as an injection into your vein, along with a drip to flush it through, or as a short infusion.

It will be put in via a syringe directly to my veins. Hopefully it will attack all active cancer cells. However it cannot differentiate and will also attack my good cells too.

It will  happen over a 3 week cycle.

Day 1 being the first dose,  day 21 being the next. He drew me a helpful diagram .. he called it “the chemo guide to shitiness”

Day 1 was treatment

Up to day 7 was TOXIC  – He says I will feel nauseous, tired generally under the weather.

Days 7-14 brought the “catch anything and feel like death” phase – this is where he said I would be most susceptible to illness..and with 4 kids in the house it’s pretty inevitable. He said this is when I will feel tired, and fluey
Day 15 onwards will apparently bring the “wait am I feeling better?” Stage. My energy should begin to increase, the nausea should ease. Its during this phase I need to have my chemo bloods ready for. ..
Day 21 I feel awesome…. let’s do it all again

He got out a whacking great a3 sheet. These were potential side effects,  he went thru ticking the most common. He says I am going to lose my hair, I will feel sick etc. It sounds like it was all doom and gloom but to be honest I appreciated his honesty. I know what to expect and I won’t get to feeling like crap on day 15 and think no one warned me about this!.

My periods will stop (well that’s a bonus ) and he says I may get menopausal symptoms.. however he suggests due to the ER+ status that once we finished frying my ovaries  we take them out anyway.

There was various other delights – diarrhoea, constipation,  a cough, rashes, mouth ulcers, thrush, vein cording and breakdown, tissue damage from the drugs, Red wee.

The oncologist also explains although I will be vomiting I am also likely to gain weight.. an estimate of 3 stone!  That’s the last thing I need. He says it will be from steroids and fluids and appetite change. I asked if I can continue to follow slimming world and he said as long as it’s just healthy eating and I accept I will gain some.

Sounds like I’m in for a joyous ride huh. I then had to sign to say if I suffered any of these that I wouldn’t Sue his arse. I suppose I can forgive him side effects if he saves my life.

We then discussed my surgery thoughts.  The main issues come from that fact that there is already involvement from the lymph nodes and the cancer is in different what’s termed quadrants of my breast. This means they are spread, a lumpectomy wouldn’t be ideal. We chatted and both feel that a bilateral (both breasts) mastectomy is the best option. It will decrease the risk of rediagnosis and will make sure we get all the sites out  (remember pesky unbiopsiable one! We don’t want to leave Him behind!)

He then examined me, made notes on the size of the lumps he could feel. He says he will rescan after two treatments to see if there is any change. That will then guide him if anything needs changing – this could include frequency,  dosage or drug combination. At the moment he suggests a starting regime of 6 and see how we go.

I get dressed again and that is that.

He suggests as it’s half term next week that I spend it with the children and we will start the following week. Pre assesment Tuesday before the real deal on Friday. 

Before I go he asks if I want to cold cap. This is, as it sounds,  a cap that pumps ice water around your head. Its theory is that it stops the chemo drugs attacking the hair follicles as much causing less loss. However reports I have read have had varying success. It also adds 3 hours to the treatment time as it has to be started before, worn during and then for a period after. Also just the thought of ice water on my head makes my head hurt. Finally my mind worries that if we are creating an area of none chemo touched cells what if a rogue cancer cell decided to hide in there? Nope it’s not for me, I’ll take the hair loss and hope for the best. 

He writes  me a wig referall and tells me about the cancer care centre. There is a lady there who will help with wig styling,  and hats and head shaving. He suggests I pop down after my appointment. 

Before I leave I have to have an ECG – so they have a baseline incase the chemo messes with it and MRSA swabs.

With my immunity about to be reduced to zero they need to ensure I’m not gonna suddenly start growing flesh eating zombie bugs… or something like that anyway.

And just  like that a shake of the hand and a reassuring smile and we are done.  Consent form signed.. this is really happening. 

The BCN asks how I feel. .numb I guess, I think I will feel better mentally once we start,  feel like I’m actually doing something to get better. I’m still pretty positive today, I’m sure that will change but for now I’m ok.

I decide to call in to the Cancer Care Centre on my way home. The lady is lovely. Takes me into a room and shows me some hats.. she has some not too awful ones and says there are some shockers. She shows me some I can jazz up with my brooches and scarves without looking like an extra from Alladdin. I chose 3 simple ones – black, red and navy and ask if I can put them by till I have been to the cash point, she tells me just to pop the £30 in when I next pass.

They are nothing flash, just basics so I can get the kids used to me wearing one. We talk about how Grace is struggling with the idea of hair loss and hats and wigs.  She has an idea and disappears. She comes back with a big bag. In it she has put some old hats and a old wig.  She says to let Grace play with them so they aren’t so scary. Of course I can’t resist a little play myself

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I feel reassured and head home. Week off for half term then pre chemo assesment.

When does the roller coaster stop? And have I a strong enough stomach to ride it till it does?

Baby musings

In a way I am very lucky.

I have my babies already. I look on other support groups and there are some ladies having t undergo the hard and heartbreaking process of IVF to harvest their eggs before having their breast cancer treatment in the hope that they can have children one day.

The doctors have told me that the chemo may send me into early menopause, and that I will need 10 years or so of Tamoxifen drugs as hormone therapy – and the oncologist is likely to suggest my ovaries removed too.

Now I am very lucky as I said, I have 4 beautiful babies and we certainly wasn’t planning any more. But it is very different not planning any more to be being told you CANT.

Its a mixture of emotions really. Logically we weren’t going to have any more and I know that all this is needed to rid me of Cancer. My cancer is what’s termed ER+ or “oestrogen receptive” that means that

ER+ Describes cells that have a receptor protein that binds the hormone oestrogen. Cancer cells that are ER+ may need oestrogen to grow, and may stop growing or die when treated with substances that block the binding and actions of oestrogen

In a nutshell all the time my body is fertile and producing oestrogen, then I am providing the Cancer with nourishment.

But there is that part of me that mourns the fact that I can never grow another little human, or experience all the tiny baby things. Especially as Millie is nearly two now and so independent, and the others all older.

I guess its just one of those things and being here to cuddle and love the babies I do have is what’s important. At 34 I never thought I would have to consider things like this. As I lay cuddling Miss Moo as we co sleep I am thankful that I have these times with them, and pray that I will have many many more years to come

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The Longest Biopsy appointment ever (AKA where the F is it?!)

Friday rolled around and I was off to the hospital again.

First step was the consultant – I was a little nervous as I knew she wanted to examine the growing lump and discuss the change in treatment plan.  Today was the day I decided my beautiful Jenny Skirt had to be worn – after all everything is easier to bear when you are wearing a beautiful skirt.

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She examined under my arm and agreed that yes there was some growth but not to panic and that they were moving ahead with things. She said the pain could be it pushing on muscles and to take painkillers if needed.

She said that in light of the fact – regardless of the biopsy results – that the scans were showing other sites, and that the lymph sites were growing and it being grade 3 she felt that  it might be more beneficial to start with a chemotherapy plan before surgery. WHOA THERE! hold on I had only just got my head around surgery!

She explained the reasons. Namely that we know I have secondaries in the Lymph nodes so we know it is travelling. Surgery would only target my breast.. and they wouldn’t be happy with the recovery time for a immediate reconstruction and any complications as that would delay chemo further. Whereas if they gave me chemo first it would treat the entire body, in theory every single cancer cell in ANY part of my body would be blasted. Admittedly I would feel sicker, earlier but it would be taking a more aggressive stance against the cancer.

It made sense actually. She explained as Carol my breast nurse had, that there was a reserved oncology appointment for me and would I be happy to meet Dr. Proctor to discuss this? Why the hell not – in for a penny and all that so she said she would arrange that for me and sent me round to biopsy.

I started in ultrasound – same as before – a really simple examination but using the MRI image as guidance. but nope the two sites couldn’t be picked up directly. So they sent me into Mammogram but for a 3d version this time.

So we went through the whole version of the chicken dance again (you remember boob in, bum out, shoulder forward next back, arm over) but this time I was accompanied by a technowhizzy thing that rotated around the poor squished boobie at the same time. That was done and I was sent back to wait in the waiting room – along with those bloody lillies again.

Finally the doctor came back – They can see the suspected benign one on the 3d whizzy one and they “think” the other one (the one they really want to biopsy) so would I mind if they squished me in the machine and biopsied at the same time? so back in we went.

 

Turns out they actually wanted me laid down too.. which avoided the arm over stance at least. So they bring in a trolley and I am laid on my side (but not toooo much remember the rogue stomach fat issue!) with my boob squished, arm up, shoulder down but not forward, fat back…. which the doctors keep looking at the screen and hmming. Then they come over and poke a bit, or pull a bit and adjust the position… and go back to the screen.. then a bit more adjusting… nope that’s not going to work! so we go to Plan B

 

Plan B is similar to plan A but sat in a chair instead of laid down. Now if you are needle phobic (luckily I’m not!) then this is a very strange position cos once your breast is lifted and squished its literally there in front of you and you can see what they do clearly. It was very clever really. They squished and manipulated and plugged in numbers till it matched what they thought on the MRI… then scanned with the 3D wizardry.. nope.. the elusive less than 4m site didn’t want to be got… OK they say lets do the other one. They put the biopsy needle in a very clever machine guided thingy and just enter a few measurements to move it, and then let it take samples. Before they release me they add a small pellet. The doc explains that this will swell and  always be visible on a scan. so that if the chemo does shrink it they will be able to locate the position.

The doctor asks for one more attempt via ultrasound so she takes me back into the other room. By now its been 5 hours and i feel like I have been hit by a train, I haven’t done anything but am exhausted and aching. I think the doctor can tell and after a quick once over she cant get the hidden one so we have to put it from our minds, she reiterates that they all consider the one they did biopsy as probably benign.

I get dressed and go home. I cant put the small elusive lump out of my mind – what if that is the primary site and they cant ever biopsy it so we never know what “IT” is? and what about surgery – will they leave it? dig about for it?

I make a mental note to ask Carol – but today I am sore and tired and just want to go home to bed

 

 

 

 

A Change of Plan? and some Good news at last!

Saturday brings a beautiful surprise in the form of a parcel for each of us. Enclosed is a stunning handmade quilt. They were all made by different ladies but were the Brainchild of a lovely Friend by the Name of Nicki. She is part of an amazing charity called Helping Hands – They are a group of amazing people who collate knitting and stitching projects for all sorts of causes and making quilts for those who need them in times of illness etc. The kids all loved their quilts! (and I snuggled under mine on the sofa straight away – will be fab for the post chemo naps!). I cannot express how grateful they , and I , feel.

 

Tuesday brought confusion. I knew that the MDT (multidisciplinary team – a collection of everyone involved in my care – surgeon, breast nurse, oncologist etc) Meeting to discuss the MRI/CT results was on Thursday 4th Feb. So I was totally confused to get a letter on Tuesday 2nd to say that my “scans” had shown a few other areas of concern and could I attend for a further ultrasound and core biopsies on Friday. It didn’t say where, or when, or how so I was a bit concerned. I popped a call into my breast care nurse – there was no answer but I left a message.

Less than an hour later someone called me back. My named nurse wasnt in but they asked if another one could explain it to me. Basically they had decided that seeing as the genetic results wouldnt be back anyway they moved the MDT from Thursday to Monday. The Great News was that my CT scan was clear – there was no evidence of any other metastatic sites in my lungs or liver etc. PHEW!! that was one of my biggest worries

However they had found another few “things” in my MRI in my right breast that they would like to re-examine and biopsy. A large one they think is more than likely benign and a tiny 4mm one which they are highly suspecting to be the primary site of my cancer.  We chatted about the fact that the highest tumour under my arm was pretty painful and was beginning to rub against my clothes and she said she would let the Dr. know and that she was also aware that due to lack of primary site that information re type and grade was not forthcoming and apologised.

I went back downstairs and told Carl that they had found more sites, “can they tell you bad news like that over the phone” he said – I tried to make him understand that this wasn’t bad news.

We have had the bad news with the Diagnosis.. everything from then on is just fact finding. After all the whole point of the MRI was to find more sites. I actually feel reassured that they think they have found the Primary – I didn’t want to spend forever wondering where the little bugger was hiding.

The following day my lovely Nurse Carol rung back – She apologised, she had hoped to call me before the letter arrived and explained but wasn’t quite fast enough. She also mentioned that my Consultant and the MDT had discussed the possibility of not doing the surgery first but actually going with Chemo as first port of treatment. She said that a oncology appointment has been held in reserve for me, but lets get the biopsy done first and go from there. She had also managed to arrange another appointment to see the consultant at the same visit as the scans and biopsy to check the growing lump and explain things further. I really appreciate them taking the time to explain things to me, its very easy to google and panic. She also said she had pushed pathology for some more information and although without a primary they couldn’t tell me the type they could say that on average the biopsy cells were grade 3.

grade 3 (poorly differentiated) – the cancer cells look most changed and are usually fast-growing. – See more at: https://www.breastcancercare.org.uk/information-support/facing-breast-cancer/diagnosed-breast-cancer/diagnosis/cancer-size-grade#sthash.3VSQTlV5.dpuf
Ironically knowing they are a fast growing stage is more reassuring – to be honest I knew that – after all my pea size lump now resembles a satsuma and there are several other sites. I was kidding myself if I thought it would come back localised and slow growing!
Now to wait till Friday and more scans!