Local Mum Nicole Kirk tells the hugely brave story of her discovery of a lump in her breast and diagnosis with breast cancer.
January
Tax time…no, not HMRC, #Chemotherapy has Tax too!
I’ve not written since my last chemo which was my first Docetaxel (Tax) part of the last 3 sessions. Boy oh boy, was given this on Christmas eve and stayed in bed until NYE! The Side Effects (SE) are completely different to the the FEC which was the first 3 chemo sessions. As I have cording (severe vein damage AND A FAT ARM, which can take up to 1 year to heal), as painful at the PICC line looks in the picture, it is heavenly having your chemo and blood tests through this – if ever you find yourself in the unfortunate position of needing to decide this, GO FOR IT!
Tax hits you DAY 3. Day 2 started with stomach cramps, Day 3, from waist down, really painful back, legs and feet..this lasted for DAYS! I could barely swing my legs off the bed to go to the bathroom and I NEEDED to get to the bathroom because the delights of THIS cycle, was unlike the constipation of the previous one…….
I also have the Lenograstim injections in my tummy Day 3-5 and I get my husband to do this. I had to do it once myself and I vowed to never again! (damn you football fixtures!)
As you can see from the photo’s, I managed to get out NYE, had lovely evening and then stayed in bed for another 3 days! My 7yo son is my #1 headband supporter ;)
Feeling WIPED OUT is NOT something I am used to. I have given in though, you can’t fight it and you shouldn’t…just ride with it.
I have a strategy for tomorrow’s session – let’s see if it is any better. I have started with painkillers today, even though it all kicks in Day 3 and I am going to try and walk outside everyday – something I could not do for the last cycle.
I still have hair as I am using the cold cap, very thin, patchy hair but I have a strategy for that too as you can see! Eyebrows thin and don’t have many eyelashes left but am using a wonderful 3D Fiber lash mascara from my friend Debbie O’Connor.
I have had my second round of the expander inflated – soon won’t need to wear a prosthesis! Found out that once I am clear of radiotherapy – up to a year, will have fat removed from tummy (thank you volunteers, I have enough of my own fat to sort myself out some double G’s!) to get a natural reconstruction – this is an 8 hour surgical procedure but can’t worry about that right now.
I guess it is to be expected that I am feeling weaker now towards the end of it….just 1 more cycle to go after tomorrow, really cannot wait!
Being diagnosed and going through what I am going through, has opened my eyes to a whole new meaning of LIFE…the people I want in my life and the people I want to surround myself with.
Chemo brain is a real thing! This is why I am very specific and to the point very quickly into the conversation – if ever you find yourself talking to me! Chemo brain apparently doesn’t go away straight away either…it hangs around….
I joined a FABULOUS ‘secret’ Breast cancer group on Facebook for ladies under 45 years old – you will be amazed at how many new members unfortunately find themselves joining, daily – but I can say this, it is a FANTASTIC group with LOTS of support, sharing and tips – a really good laugh too :)
I’m in a really weird place right now and only those who are going through this themselves or are supporting people through it will understand. I will resume to some form of normality in the near future, I promise!
PS : You can bet that I WON’T be doing DRY JANUARY either :P
Thank you for the lovely messages of support!
X
Nic
Chemotherapy: They said it’s rare that you get sick immediately after….
I got sick…immediately after!
I am good now though, a week after my first cycle. On the day though, different story. It went something like this :
4 hours of the session as I am trying the cold cap. I am on FEC for first 3 cycles and T for the last 3. The E in the FEC is just blady awful! *This part of the treatment is manually administered and I believe the T is via the drip.
Apart from the lady next to me – (who happened to be my buddy in the Nil by mouth room on the day of the op) and the older lady across from me, everyone seemed a bit low. Ok, so, granted, there are other better ways to spend your day than in chemo and I don’t know the ins and outs of their diagnosis but you got to work with what you’ve got! That said, they played really bad music in there….Ronan Keating….nuff said. *Bless Ronan though, he lost his mother to cancer and does a lot of work for the charity but my personal opinion is that his music is not suitable for chemo, can’t actually think of when you would listen to Ronan Keating? Louis Walsh may be able to help with that….
Chemo : Nails looked great, left arm produced a beautiful vein (can’t use right arm due to lymph nodes removed) and the cold cap was put on, making me look like a cross between a Mario Kart mushroom and a ninja turtle….you decide..or as my husband suggested, Fortuna from Star Wars!
Got home at 3pm, started feeling nauseous at 4pm. From 5-8pm, I was sick on the hour, then every 30 minutes until 10pm when I got to A&E. I was put on a drip of Metaclopramide (Maxalon) and that took the edge off. They also did an x ray to check. Got home 00:30 and had a great sleep.
I have not been sick since, thank goodness (just nausea but nothing is as bad as that first day)! Captain Kirk went back to the hospital to collect different anti sickness pills and an increased dosage. These have really helped me.
For those going through similar, I will be on Emend for my next cycle (I had requested this in the beginning, based on my uncle who is my second opinion), I am also taking Ondansetron (try and get as much of this as you can, not just the 2 they send you home with), Dexamethasone and Metacloppromide vs the Domperidone (they will supply this but since understanding the difference and personally feeling the effects, the D doesn’t send the message to the brain like the M does in terms of the nausea, so the M is superior to the D).
I stayed in bed for the first 3 days, really needed to – except to collect my late night craving 2 days later, for the hottest Nando’s! Worth it!
I am up and about and resting when I am feeling tired. I am craving anything salty and need hot and spicy – all my favourite things! Salt and black pepper crackers are helping with the nausea and juicing in between with lots of ginger.
I am off to the hospital this morning for my first ‘inflation’ of the breast post op, it’s been 7 weeks already! I am also popping in to see my nurse who I spoke to yesterday as my arm has suddenly started hurting A LOT where the drugs were administered – he said it’s likely to be the E of the FEC….nasty bit that.
It’s all blady ‘Fek’ lol but there are people much worse off than me!
Nic
x
Today’s the day….
Phase 2 begins…..
I start chemotherapy in under 2 hours – Just painted my nails, no, I am not vain…hospital orders! Gloss apparently protects the nails….who am I to argue?
I am not nervous – spending an hour in the chemo suite last week helped as I had my bloods done and fitted for cold cap. I had big plans today of starting my learning Spanish, downloading all my favourite music, writing, etc….the way I am feeling now, I may just read and sleep for 4 hours! I am starting to feel tired and I am not even on the drugs yet!
I had a moment yesterday when I wondered if I should look into a Dallas Buyers Club of sorts…here in Surrey….more about that another time!
Need to get my sh*t together….
I’ll update you in the next few days, provided I can keep the keyboard clear of vomit.
x
Reality is sinking in…
I’m sitting here, putting together my hospital file of all my letters, appointments, booklets that get given at each stage of diagnosis and update and what to expect at each different treatment….
I’m looking at consent forms, mastectomy information, reading about my stage of cancer, the highest you can get if you’ve got it, grade 3, aggressive, fast growing…
Like what the hell just happened this summer 2014!?
Found a lump, had it checked out and life will never be the same again. It won’t.
I’m not talking about the impact of the mastectomy itself – well yes, sitting here thinking about it, it’s really suddenly hit me, holy shit, how the heck did you manage to breeze through THAT and not have a nervous breakdown!?
Just today I was thinking of how I explain my ‘situation’ to people…Do I have cancer? Did I have cancer? Well, technically speaking, I believe it should go something like this : I was diagnosed with grade 3 breast cancer, had a mastectomy and 13 lymph nodes removed, 8 were cancerous and I’m about to start chemotherapy and radiotherapy will happen after that. The process is to kill off/zap any stray cells they may not have got during the ‘clearance’ and to try and prevent them from growing again.
It’s definitely helped with those annoying calls esp on my mobile just today, do I have time for a survey? Erm, no I don’t sorry, I’m just about to nap as need my energy for chemotherapy…..
I say things will never be the same again because they won’t! This ‘experience’, ‘situation’..has given me the edge I need. You see, before this had all happened, I was finally getting direction and learning to live according to the Law of Attraction….heck, I’ve even got a vision board, with stuff on!
But one thing, I/we, were working very, very, hard at getting to where life’s journey had taken us. For the last 5 years, the pressure has been immense and only on reflection can you see just what you put yourself through in order to get what we wanted as a family.
This was my wake up call. No more. It can’t happen like this anymore. It’s got to be done differently.
We will now STOP and enjoy LIFE! The hard work is DONE!
I’m still very set on achieving my goals and business/life plans but I’m learning to do things differently.
Anyways, I’ve drifted.
I’m sitting here with my hospital book as I’ve got my heart cardiogram tomorrow and I’m looking for my letter, which confirms the appointment time…
#differentisgood
X
Results are in and results are GOOD!
I should have updated that on Monday 6th October, the Bone and CT scan came back GOOD! The Grade 3 Cancer has NOT spread to my bones or organs…wooohhhooo…I celebrated with champagne!
SUCH a relief! It made the 1.5 hr wait, SO worth it! The oncologist had been away on a sabbatical and this was his first day back! My nerves were well and truly UP, not to mention Captain Kirk pacing up and down the corridor, switching between playing Candy Crush and reading a 2011 hospital magazine of House and Home. Thankfully, my bag was stashed with magazines and he flicked through Grazia.
When the oncologist delivered the news, I said right, I can go now, nothing else matters! That’s how I honestly felt…yes, I have to go through this chemo malarkey but it seems like a walk in the park, compared to what the news ‘could have been!’.
Now, I’m not saying that chemo IS going to be a walk in the park because I know it’s going to be tough, but honestly, for me, it’s easier to deal with than the thought of other things that were possibly going to be affected.
This week, I am back in on Wednesday for a heart echocardiogram, which takes around 45minutes and they put pressure on your…CHEST…wtf!? I’m going to assume that they will do their best to minimise the discomfort for me as when I lay flat, it still feels like there is a spear in me post the mastectomy!
Then on Thursday, I need to do more bloods and another chemo consultation.
Chemo starts on Wednesday 22nd October. I will be on FEC treatment for the first 3 cycles (that’s 9 weeks of those drugs in my body) then I switch over to ‘T’ drugs for the last 3 cycles ( 9 weeks of those drugs in my body).
This takes me to February where I will have around a 4 week break then start radiotherapy.
Perfectly timed that I have another EFT session on Saturday and a Reiki session on Monday, all before the treatment starts – I’m very pleased about that!
I’m feeling genuinely OK, slight butterflies in my tummy but all in all, mentally, I’m fine. Physically, I do need to remind myself that I need to rest more as am still recovering. I can only do once activity or meeting per day and I’m best in the morning, I then need a few hours nap but not been having it everyday and boy does it catch up!
People in my life have been truly amazing, I’m so, so blessed!
Nic
X
Oh, I went back to get my hair cut shorter!
Results are in….Good? Bad? You decide…
Had my post op appointment today. I’m beginning to be a good face reader…I could tell by the look on my consultant’s face, there was a lot to discuss.
Here’s a summary and some facts :
* Breast cancer is graded 1-3. My results have come back as a Grade 3. ‘The cancer cells look most changed and are usually fast growing’.
* Type of cancer – Invasive – Ductal with Ductal Carcinoma in situ (DCIS)
* In addition to the tumours in the 2 ducts (1 invasive and 1 non invasive), 13 lymph nodes were removed, of which 8 were cancerous.
* Even though I had the most advanced scans, involving dye, the cancerous nodes were not picked up. It was only because my consultant (who is also my surgeon), used her expertise and felt them during surgery and took the decision to remove them and send to the lab. Had she not done this, I would be having surgery again next week!
* If more than 4 nodes are affected, next step is to have a bone and CT scan. This is routine and to determine if the cancer has spread to your organs or bones…yes.
What now?
* On Monday I have an appointment with my GP for some sleeping pills. I’ve been sleeping upright since 9th September. I’m usually awake 2/3am every morning.
* It’s advised to have a flu vaccine pre chemo so will discuss with GP as ideally, it will happen next week or early part of the following week.
* Wednesday I will be having a hair cut. Nothing to do with today’s appointment but I’ve decided to get a shorter version of my current hairstyle so that I can get used to things this way…ie. shorter, partial or no hair, who knows!?
* I’ll be receiving a letter next week of a date for my bone and ct scan – this is likely to happen week commencing 29th September 2014.
* I meet my Oncology team on Monday 6th October 2014. The team will by then, have the results of the scans of the previous week and I will know if the cancer is in any organ or bones….yes, I’ve just said that….
* Chemotherapy usually starts a week after this meeting. Currently, I’m down for 6 cycles of chemo. By my calculation (1 day every 3 weeks), this takes me to February 2015. We know that radiotherapy is also needed but until I have the meeting on 6 October with my Oncology team, I won’t know if I’m doing 6-8 cycles, won’t know radiotherapy date and I’ll only know on this day if the cancer has spread.
* If the cancer has spread…….STOP! I don’t know the answer as it will be specific to what and where it’s spread to and I cannot worry about this right now.
* 31st October, after my first but before my second chemo treatment, I have an appointment to see my consultant to review the implant and to increase the fluid via the port that’s currently inserted in my breast muscle.
How am I feeling?
* Let’s just say that up until yesterday, I was a different person. I’ve been mechanical up until now and emotions are setting in. I’m not a complete mess….yet…that will come during chemo. I did cry today and it felt good. It was a mixture of release but also, ‘yet more scans and more potential bad news and more waiting’. This release happened in my special room that I go to after the consultant- it’s our safe place to talk to the nurse, over a cup of tea….and always a full box of tissues in the room…
* I was convinced that they would drain the breast today as it is looking and feeling swollen….but she didn’t. Earlier in the week, it felt like mastitis! She explained that the fluid is moving around in the implant and there will be an element of lymph fluid too but she won’t drain it now. I’m only to be concerned if it turns red.
* Not sure why I thought this was a 3 week recovery but it’s 6-8weeks for full recovery! My breast bone still hurts ALOT.
* I’m very scared of lymphoedema – that’s getting a fat arm for the rest of your life! 30 % of people who have their nodes removed, get it. That’s a rather high %. At the breast cancer group this week, my first one, 3 ladies had it and wore what looked like a cast/bandage.
* I CAN go to the gym but only gentle stuff and no lifting.
Eating healthy is going to be vital now, more than ever. Juicing has started.
X
Nic
‘That’s one small step for man, one giant leap for mankind’
Yup, I felt like Neil Armstrong yesterday for my first walk out the house, exactly one week after surgery…I was BUZZING!
Don’t remember reading about Neil needing an ice pack though…but that’s what I was doing at 9pm, holding an ice pack against my chest!
Yes, I overdone things. I went from feeling super upbeat and excited in the morning, to laying in bed feeling swollen and like I had mastitis!
The redness and hotness was similar to that of a Baywatch swimsuit and in fact, the size of the swelling, I reckon I could have given Pammie a run for her money! I was MUCH less glamorous looking though, my ‘ice pack’ … was ice in a Tesco plastic bag…..
A few days before, the nurse removed my drain as the fluid was 35 ml, so I was good to be released. The swelling I believe is a combination of me maybe walking around, moving around too much on my first day out, might have gotten things flowing, hence the swelling. I have spoken to my McMillan nurse and have my post op appointment on Friday morning.
The surgery has honestly not bothered me one bit, it’s just one of those things and the fact that my consultant did such an AMAZING JOB, is it horrible that I am now favouring righty, who is all pert and solid? Don’t worry lefty, I still love you and will pay for you to catch up and match righty when this is all done in the near future!
#firstworldproblems
Post op…I survived!
Soooooooooo, all done!
I was so busy pre op, by the time I was dropped off at the hospital on the day of surgery, all I wanted to do was curl up under a blanket and sleep! No fear, just exhaustion. (I worked until 9am that morning, tying up loose ends..I needed to be at the hospital by 10am! )
I was allowed water until 11am, my last glug being at 10:57am, as recorded by the nurse. My consultant came to sharpie mark me and I was really happy to know that further down the line, the cleavage part of me that has my mole, was staying…YAY! *Not that MY mole has any effect in my career like Cindy Crawford’s has on hers … I just like mine!
I then moved to the Nil by mouth room. There were a few ladies waiting with their belongings by their side. The recliners were empty so I took the opportunity to plonk myself on one, the nurse gave me a pillow and blanket..and I slept.
I was woken to meet the Anaesthetist. He was rather easy on the eye and I was very conscious of opening my mouth when he checked as I couldn’t eat after 7am so was conscious of my coffee breath! Thing is, when you make yourself aware of something, that’s when you mess up because he asked me to open my mouth again as thought I had something red on my tongue, I did, a coffee burn from days before…
Dozed off again to be woken to say its time. Got changed, said a few prayers and off we went. Pre theatre room was very sterile, bright and FREEZING! Started talking about my recent holiday to Barcelona to the ladies whilst the anaesthetic was put in my left hand, easy on the eye Anaesthetist walked in and the next thing I heard….’Nicole, surgery is over, you are now in recovery’.
Felt the usual post anaesthetic feel, groggy and like I was going to be ill. I managed not to be and 30 minutes later was taken up to Recovery. Met husband as bed was being wheeled upstairs, so that was handy. I felt very happy more than anything that Phase 1 was over, hence the smile and thumbs up I managed an hour after surgery, along with the glazed morphine look….
I won’t lie, the first 2 days were
extremely tough and painful, it felt like there was a spear being turned in the middle of my chest and a screwdriver under my arm. The consultant explained that while she was operating and had taken the lump and sentinel node out, she felt that the lymph nodes looked abnormal and suspicious, so made the decision to remove all. This meant cutting through under the arm and attaching a drain.
*The best (or breast?) way of describing the mastectomy is, picture your nipple. Now picture the shape of your eye being drawn VERY LARGELY over the nipple. The shape of the eye is what they cut out to access inside (bye, bye nipple)….they then scoop it all out, then pull the top and bottom remaining skin together and stitch up, with a long line across. The breast is now empty but in my case, I have an inflatable balloon inserted via a port under the breast muscle. It currently has 100ml of Saline pumped in. This will increase over time.
I see my lovely consultant on Friday for a post op discussion to review how many of the nodes were affected
as she will have the results by then. I do know that Chemotherapy will start 2 weeks after Friday and radiotherapy is also required.
Except for the obvious….I’m all good!
X
Nic
9th September 2014 – D Day…or is that ‘B’ day?
Shit, fsck, fuckity, fuck….
Sorry, had to get that out.
I’m ok, really I am. I have hardly slept though. It’s 5:30am (been up every 45 minutes), all I want now is some Nytol…but hey, I’ll be getting morphine later so just need to hang in there. I need to eat something ‘light’ before 7am.
I did not have a bye bye Boobie party, no time! I have been talking to Boobie in the shower though, saying sorry but as the hours get closer, I am feeling slightly less attached to it as who in their right mind would want to hang onto something in there that will kill them?
That said, it’s not the Boobie’s fault, so today my friends, as I have not been able to toast with you at a leaving party for Boobie, have a minute silence in honour of my right Boobie at around 1pm today. It’s a 3 hour op – I REALLY hope they give me enough morphine.
Put your sound on later…;)
See you on the other side……hopefully!
Nic
xxxxxxxxxxxx
Alway’s wear matching socks and shave under your arms….and read your hospital notes!
To date, I have yet to read all the information provided to me, regarding my breast cancer appointments and next steps. I have seriously just been taking it one step at a time…for several reasons.
If you know me personally, you will know that I usually go 100 miles and hour, doing all sorts at the same time (pretty much like every #multi-taskingmummy, right?) – I promise that I do plan to stop and slow down after this.
Yesterday, I had my sentinel node mapping. Had not read a thing, I made it to the hospital a few minutes before my appointment and walking through the car park, I started reading the reverse attachment to the appointment letter…..SHIT…
sentinelnode
I was not wearing matching socks AND I hadn’t shaved under my pits!
I IMMEDIATELY confessed to the guy who gave me my 2 hospital gowns – he laughed and said not to worry…then I felt even sillier because he didn’t need to know THAT – he was only responsible for giving me the gown, not seeing me in it…lawrd!
Confession time again to the lady carrying out the procedure, she laughed and promised not to judge me. I’m no hippy I assured her.
Needle into breast and breast moved around for 10 minutes. I felt so relaxed, almost fell asleep (told you I have been going 100 miles an hour and then some!) It was an MRI type machine and you go under but thankfully, this time facing up and lots of openess and room around you. The machine then covers your chest and pictures/xrays are taken.
After about 15 minutes, the lady announced, ‘beautiful and clear, I see the node clearly’. I was shown the images after and modern technology is truly amazing!
Had this been back in the day, my understanding is that all your nodes would be removed. I was marked with a pen and taped.
It’s feeling real now….
:(
Mummy’s lump
The hospital gave me this brilliant book for my son. (Chosen just a few pages here) On Sunday, I laid in his bed and explained what was happening. *He doesn’t know the ins and outs of the mastectomy, he doesn’t need to, he is 7. He know’s that mummy has a bad lump that is being removed.
He is generally a worrier and I could see the concerned look on his face, especially after explaining the most likely effects of chemotherapy – hair loss. I explained that I could wear a bandana or a wig. He said : ‘Not a bandana PLEASE mummy, only people who do karate wear those!’
……
He also asked me why can’t I ‘just say in hospital until your hair grows back?’ Hmmmm, I sensed the embarrassment so I promised him that I will always wear a wig if I need to come to his school! Not taking it personally, he is 7 but I did explain that he shouldn’t worry about the hair loss, he should focus on mummy getting better.
x
Nic
Things are moving quickly…..
nicbday
So, it was my birthday on Sunday, my last night in Barcelona. One of the most relaxed and happy evenings I have had in a month, not to mention, my first home cooked meal since the 10th of August (yes, in addition to my diagnosis, we are the middle of doing our kitchen…well, the kitchen WAS planned, not the lump!)
I was genuinely happy and relaxed but right now, it’s 2:40am and I am restless. Mainly because I had a ‘nap’ at 8pm I suppose. I have now informed the children’s schools of the imminent changes at home. Just so that the school can monitor any unusual change in behaviour/school work over the next 6 months – shouldn’t be a problem but maybe it is more forgiving in the future if I send them in school uniform on a mufti day? Apparently, forgetfulness is a side effect…
I had my pre op assessment today (well, yesterday, Thursday). I wasn’t sure what to expect but it was basically like an MOT….just procedure to check if you are in working order. I filled out the forms over coffee at 6am and got to the question : ‘Do you have any concerns about the anaestehtic/procedure?’ – Well, I hadn’t really, up until that point! I wrote that I would just like to come out alive….odds are good that I will, the nurse confirmed.
I learnt 2 things today:
1) By swabbing up your nose and on either side of your groin, MRSA can be detected – as my op is in a few days, they send it away and speed up the growth to detect if I have it. Apparently, people are walking around with MRSA without knowing it.
2) The anaestehtist is going to be seated by my head throughout the 3 hour op. He/She is likely to be at consultant level so will be in very experienced hands.
I had my blood pressure taken, 3 tubes of blood drawn, an ECG, MRSA swab and my airwaves were checked as anaesthetist’s job is easier if it can be easily seen – the nurse commented that my results are all textbook, which made her happy with no concerns. So, I am all good….except for this cancer shit.
We spoke through what is happening next week. Monday I go back for MAPPING. They will mark the affected boob – I am guessing with a sharpie of sorts, all ready for Tuesday. On Tuesday, I am to take minimal things, in a plastic bag – I couldn’t help of thinking of a prison scene.
I will be attached to a few drips and dye injected in me. It may be a blue or green dye – green is my favourite colour, let’s see. Then again, blue could be good luck as Jose Mourinho is BACK!
I am going to turn the colour of the dye and when I need a wee or cry, the liquids produced will be colourful – I bet my son would love me to go to Show and Tell!
A corset type thing is going to be attached to me and I will probably be very sore, groggy and tired afterwards. Oh and I also learnt that they do not start the next patient’s operation until I am fully ok and no complications…comforting to know…I think? If all goes well, I will stay just one night. Nurses will visit me to do the drainage etc…*barf*
Again, the NHS has exceeded my expectations. I was not rushed, all my questions answered, lovely experienced nurse carried out my assessment…nothing could have made my experience better. If you have lived in another country, you will maybe appreciate a little more, just how wonderful the NHS is.
The Costa Brava doesn’t cure Cancer….
But it has SPECTACULAR views and has helped to clear my head!
The children’s passports arrived 2 days before we left! Our first road trip to mainland Europe and it’s been AMAZING!
Rural France then a week in the Jewel of the Mediterranean, El Port de la Selva. Breathtaking views and a desireable pace of life, I was conscious to even breathe slower, take it all in and JUST BE!
I slipped in and out of moments of parking my diagnosis, right at the back of my head and enjoyed climbing the rocks, swimming in the clear water and purposefully setting my alarm so as not to miss the most perfect sunrise -afterall, this is where Dali himself lived, worked and was inspired!
Am now in Barcelona, enjoying the history and beauty (La Sagrada Familia OMW-the most beautiful building in the world!)
I’ve slowly started to think of what lies ahead when we return home. I go from being mechanical to being sad and angry, asking myself how and why did this happen but more so, how did I not notice it? I ask myself, if I had not been so rushed in my life, would I have taken the time to check more regularly? Would I have discovered the lump at a much smaller size? Could I then have had a lumpectomy instead of being faced with a mastectomy?
I’m putting it down to nerves. Thinking rationally, I’ve discovered many women who been through a mastectomy, even double mastectomy by choice, as they were carrying the gene. My breast cancer is not gene related, it’s sporadic growth. You qualify for gene testing if you are under 40 and have an immediate relative who has had it – mother, not aunt in my case.
My consultant called me before my holiday as I had queried gene testing AND it had occurred to me, 11pm the night before, sat straight up in bed, ‘would I be better off having a double mastectomy than having a single? Would I be bothered knowing that one is different, even though, over time, I’m opting for the natural reconstruction, using tissue from other body parts?’.
She explained that removing a completely healthy breast can cause complications. Women who do this, would also be sent for a psychiatric assessment as it’s removing a perfectly normal body part. She explained that most woman who have tissue reconstruction, are generally very pleased with the results. *I’ve seen the pictures at the hospital of before and afters…AMAZING!
Thinking about it, I don’t know many women over 40 who are thrilled with their boobies and have not considered a lift of sorts….
My diagnosis came as a shock to many of my friends and family, especially as a few months before, I had embarked on a #fitby40 mission! (It’s my birthday on Sunday and I will be 39). Physical changes had already started becoming apparent through my bootcamp sessions using weights. I joined the gym a few minutes walk from me two weeks before I found the lump. I’m an early riser and was looking for an option to exercise first thing.
Here’s the thing, people who I’ve personally come across who have been diagnosed with either a type of cancer or breast cancer, are some of the fittest people I know! Yoga teachers, marathon runners and fitness fanatics…also, there has been an ex gymnast with a high public profile, who’s just recently gone through a double mastectomy after finding a pea sized lump after doing her normal post yoga stretching….
I’ve mentioned to a friend that it’s now an #aliveby40 mission….she wasn’t impressed, so I’ve given this more thought and there is no reason why I cannot continue my #fitby40 mission, I just need to adapt it! One of the things I am going to miss is the kettlebell…if anyone knows a trainer who has worked with a woman who has a mastectomy, please do let me know as I need to know what upper body exercises are appropriate!
Might be the Spanish sun or the Sangria but it’s inspired me to learn Spanish, perfect use of my chemo time I *think*? It’s a no brainer as I can use it in my work as well! (I run an au pair agency).
Adios y hasta la proxima!
Nic
How I’m teaching my daughter to check her breasts.
I know that there are sights out there informing you how to check your breasts. For me, in September 2013, my GP checked my breasts and nothing was apparent, roll on 10 months later, I now have Grade 2 breast cancer and am am having a mastectomy. *I had checked a few months AFTER the appointment myself as well!
I had been to the GP for personal reasons, (combination of feeling overwhelmed and stressed about a few things, which resulted in a rather acidic feeling tummy) and then said, ‘by the way, I can also feel something tingling here’ – 10 months later, that is the affected area. The doctor made me raise my arm and felt, checking both breasts. She couldn’t feel anything and said that usually, feeling something tingling, is something else as with breast lumps, you can feel the lump instead of the sensation.
It was during these 10 months, the lump slowly grew and in addition to some weight loss, BOOM, there it was! I’m not going to focus too much on the weight loss as it was not as if I was next up for Britain’s biggest loser or anything like that but I do know that it’s easier identified (and possibly sooner?) if you are a healthy size. *My size will always be curvaceous, realistic and storage shall be kept for great food and wine appreciation, let’s get that clear!
*The lump that I have right now, would have been very obvious if it were this size back in September, so think it was a combination of time passing which allowed it to grow and some weight loss.
This is how I am teaching my 14 year old daughter to check :
Once in the running shower, lather up the soap/shower gel
Step AWAY from the running water with good amounts of the soapy/lathery stuff cupped in one hand
Raise your arm over, so that your elbow is as close to your head as possible and start walking your fingers down your spine – hold that position
Once in a comfortable-ish position, use your opposite hand that is filled with the soapy stuff, to rub over and under your breast and feel around
Take your time to move your hand around the breast in a circular motion, then work your way around the breast, letting your fingers walk over it, moving the tissue around
With your arm still raised, slowly bring it down BUT keep at a right angle, then feel around the breast again
Repeat on the opposite side
I’m not a professional and do not hold any medical qualifications, I just know that I have a cancerous lump, I am the woman you know personally and this is how mine was discovered.
Much love,
Nic
x
Decision time…..
Must mention this first. I was SO nervous about putting my blog OUT THERE, to the extent that I was shaking like a leaf before pressing the publish button and once I hit publish, I went to pour a large glass of wine! Well, I searched and searched for the blog as I connected it to my Facebook page but it did not connect. OMG, the next 20 minutes was awful! I pressed publish a few times, went in and changed my settings and checked, even texted a friend, ‘can you see it?’, she couldn’t!
I eventually sorted it and then stayed offline for a few hours. I felt sick, not anything to do with my diagnosis, just tummy turning sick and shaky! When I did pop back online, I burst into tears at the comments. Rob was next to me and asked what was wrong – told him I had just published the blog and I read just *some* of the comments as I was just crying. These were tears of RELIEF and gratitude, so THANK YOU to every single one of you who read my first ever blog about my journey, thank you to every single one of you who shared a story, commented on both the blog and Facebook, thank you to everyone who called and left me a message, sent me a text, a what’s app and a private message too. Each of these messages, be it a simple ‘x’, has meant the world to me.
I have truly been mechanical throughout this, once I had a few RANDOM crying sessions. Not more than 4 times to date. It’s happened at bed time, once I have taken NYTOL (thank goodness for that), I lie there and just feel terribly sad. It’s on my mind 24/7 but for the most of it, I have been fine, just taking it one step at a time and trusting my wonderful consultant and her team.
Since sharing the blog and yesterday’s meeting at the hospital, I admit, it’s hitting home a lot more. It was the release I needed and it will help me in the dark days. I have heard that chemo will be harder than the actual surgery so I have been planning on how I am going to overcome it. I have obviously been through the scenarios of how I am going to look and feel when I lose my hair. I think it’s inevitable that I will lose my hair I believe. There is an option to use a ‘cold cap’ : http://www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Symptomssideeffects/Hairloss/Scalpcooling.aspx but it has mixed reviews. I am inclined to just ‘let it go’ – and even I, as tired as I am of hearing the Frozen song, you just can’t help but sing it when those words are uttered huh?
I did tell Rob that I don’t think I would make an attractive bald person! He said if it were him, he would rock a mohican…erm, no thanks. There are lots of options out there and this is one highly recommended by a doctor friend of mine : http://www.lucindaellery-hairloss.co.uk/ be sure to watch the video, it’s amazing…..and then see which celebs use her too : http://www.lucindaellery.com/celebrity-gallery.php
I’m really not sure what I am going to do yet – just taking it one step at a time. I think about it like this : You lose a boob, go through a rubbish few months trying to tackle the disease, you lose your hair, you keep your LIFE! Small price to pay…besides, hair grows eventually!
Yesterday, 15th August 2014 – I met with my consultant, who by now, you would have read about her experience in the previous blog and I am sure you are also pleased for me!
Op booked in for 9th September. It’s going to be 6 hours. I have chosen not to have immediate reconstruction. I will have the full mastectomy and an expandable inserted, which is inflated with saline over time. We don’t know at this stage if radiotherapy is needed after chemo. If you DO need radiotherapy, they wait for one year after your treatment is completed before offering any type of reconstruction. So for now, I will have an expandable, inflatable. Further down the line, once I am cleared, I can then choose to have reconstruction using tummy or inner thigh skin – this would the most natural feeling tissue versus the silicone. We are nowhere near that process now so I am not going to talk or think about that any more.
*A part of me is happy to just leave as is and I still have the opportunity to tell them on the day if I were to change my mind and not want the expandable but I also have the option of having the expandable and if I am not happy after 2 months, she will remove it! TOLD YOU I am in good hands!
expandable
I’m in good hands….
I feel blessed and grateful to be under a wonderful consultant…who is also my surgeon and will see me through my journey!
Thought I would share a little more about her :
Special clinical interests : Breast care
Oncoplastic breast surgery
Breast reconstruction
Breast reduction and augmentation
Benigh breast problems
Current and past posts :
Oncoplastic breast surgeon, Lead Clinician for Breast Cancer.
She is a consultant oncoplastic breast surgeon. She is a Lead Clinician for Breast Cancer and has a strong background in oncoplastic breast surgery. She studied medicine in London, undertook a BSc and was awarded a First Class Honours Degree.
She has received specialist training and is a clinical lecturer to breast trainees and teaches on oncoplastic skills courses.
Her clinical practice involves performing the full remit of oncoplastic breast surgery including breast reconstruction with implant and LD flaps, therapeutic mammoplasty and sentinel node biopsy. All her breast cancer patients are discussed at the cancer network MDT at which she is the MDT lead.
She uses her skills to minimise the cosmetic impact of breast cancer surgery and to preserve breast aesthetics where possible.
Feeling #grateful
x
Shit got real….
Thursday 31st July – the day after being officially told that I would need a mastectomy.
I walked into my local Cancer Information Centre and took a deep breath as I pressed the buzzer. I introduced myself to the receptionist, ‘Hello, I’m Nicole and this is my first time here’.
I was given a brown envelope which I did not open (by now you have already gathered that I am not one for opening stuff straight away or even researching it) and I sat next to a lady who also had a brown envelope sticking out of her bag. It was obvious that she had completed her treatment as her hair was very short. She explained that she chose to visit the centre only once her treatment (chemo) was finished as then it would mean that she would not need to worry about changing appointments if she felt unwell.
The chairman collected me from the waiting area and we went into a lovely room. She was very smiley and warm and explained how the centre worked. For a £30 donation, you are entitled to 10 treatments by trained therapists (bargain!), then additional treatments are £10 each (still a bargain!). Treatments are : massage, reiki, eft, reflexology, aromatherapy, tha chi and yoga. The president of this centre, is a well known English actress from my all time favourite sitcom and she and a well known, flamboyant London Mayor, had been there just a few days a few prior, doing a Thai Chi session!
The centre also offers an arts and crafts club, a cinema group, writing workshops and a choir!
She asked me questions from the form regarding my life and diagnosis and then got to the D.O.B details, she laughed and said I looked 12! She said I seemed very ‘together’ at this stage, given what I am about to go through. I explained that I became very mechanical about it but I am sure that I am going to breakdown closer to the time one things REALLY start happening.
We walked through the centre so I know what’s where for next time. A group was gathered around doing all sorts at the table and having a chit chat – I could smell the lunch being prepared. Must make a note of that. Book your treatments in for Thursdays as it’s followed by lunch!
Met a lady who makes a heart shaped object inspired by her own journey. The best way to describe this is like a travel pillow you would buy for your neck, in a heart shape. This is for ladies who have a mastectomy and find they need something soft in the night if they slept on a particular side and it’s also useful post op, if your seatbelt needs to crossover the affected area. Told you, shit just got real!
Nicole
x
It was 8th July …I am 38 years old and 11 months…
I will forever remember this day, even more so than Wednesday 30th July 2014, when I was told by the registrar, ‘It’s Cancer’….
Yes family and friends, this is really happening….to me.
I was in the shower that morning, later than usual, it was an inset (teacher training) day for Jamie, so he was home. For some reason, my wash cloth was not in my bathroom – in my head I had wondered what did Jamie do with it NOW? I have previously seen him WASHING the shower screen with it….
I continued with my shower, so I applied the shower gel straight into my hand and started washing myself….that’s when I felt it, the close, direct contact of my hand to body, made me feel a real LUMP! How the hell did this get here and I have not noticed it? It’s a sizeable lump too! I burst into tears and just stood there, shower running continuously. I got out and dialled the surgery. I was on the bed, shaking.
I got the through and the usual receptionist questions, ‘what exactly is the problem?’. ‘I found a lump in my breast and need to see a doctor’ – I was given an appointment the next day.
There was a locum doctor working and she was lovely. She confirmed the lump and did a referral. The NHS acted very quickly and 5pm the next day, I got a call about my appointment for the following week. This was a crazy week and the start of ridiculous alcohol consumption….
My appointment – Monday, July 21st – my wedding anniversary! Drove to the hospital and met the lovely consultant. After being checked, immediate referral for ultrasound . From this moment on, I could tell we were about to begin a journey of sorts, I wasn’t sure of the type of journey but I knew there was to be a journey. My husband Rob, waited with me and after being married for 14 years, doing anniversary things wasn’t that important to us, so we had not made major plans but one thing for sure, sitting in the radiography waiting room, was not something that even crossed our minds!
Met what was to become my first team. Got called in but Rob was not allowed. It was ok though as we were on a tight schedule being the summer holidays and have a 7 year old son who was at a summer club until 12:30pm. The radiologist was gentle, even in the way she spoke. This ultrasound was longer than any I had with both my 2 children. She confirmed that the lump was 2 cms and I would need a mammogram. The problem was, as I am ‘in between’ being young and old (!), a digital mammogram would work better for my age – this beautiful, big clean, friendly, Surrey hospital was in the process of getting one. Here is where the NHS shows HOW great they are and how lucky we are to have the NHS!
They arranged a same day digital mammogram at another hospital 20 minutes away. I got to this hospital and was seen straight away. A LARGE chilly room and this was my first ever mammogram. In fact, I had never even watched a programme or googled this – I later learnt that my husband had watched a show about it. For those who are like me and have (had) no clue, it’s like an eye test for boobs! It is meant to be more uncomfortable than painful but given the size and position of the lump, when my right boob (the affected one), was lifted, squeezed and practically flattened, I grinded my teeth SO MUCH, my gawd, what a relief when both shots of the right was done! The left was uncomfortable but thankfully, not painful.
I was back at the original hospital the next morning where the biopsy was done. Not sure why I thought this was a 5 minute needle prick thing – again, did not bother to read, not even the what to expect leaflet….45 minutes later….2 biopsies were completed. I had a senior radiologist carry it out and a new team of supportive nurses. The radiologist was extremely friendly and chatted to me about all sorts once she heard the SA accent, her son loved SA apparently but was now travelling in Asia. She explained what the biopsy would sound and feel like. The nurse held down and pushed my breast after anaesthetic was applied. The sound was like being wacked by a giant elastic and the feel was that of a staple gun would feel!
She had the screen facing me and explained every step of the process as she was carrying this all out. She showed me some suspicious looking stuff under the lump so had done a core biopsy. This stuff was to be the calcificiation, which could have been there up to 6 years…The lump was 2cm plus 1cm for the calcification. She had checked the nodes and seemed clear but could only tell more from an MRI. Left breast was checked as well and appeared ok.
Copious amounts of alcohol resumed.
July 28 2014 – MRI day. I drove myself to the hospital as had previously had MRI’s a while ago for my back. Thought I would be fine. I entered the hospital from a different entrance this side….massive signs saying CANCER UNIT. Passed a guy at the entrance who was obviously done with his chemo for the day as he was bald and carrying blankets, still smiling though!
Once I was in my 2 hospital gowns as first one you had to leave the opening at the front and then for the good of the public, you had to cover up with one on the other way. Lovely guy Brian helped me and explained what was going to happen. Injection in arm first. OK. I enter the MRI room, two lovelies there and explained things. Again, did not read up and didn’t realise that this time, my MRI was to be facing DOWNWARDS! My GAWD…I am not even claustrophobic! Clever though, things have moved on since my last MRI 10 years ago, face down and your boobies fit into a coldish moUld (think of the song..FREE FALLING).
Once in, I had headphones on, shut my eyes, and just let my body relax. It was very light once inside, even though my eyes were shut..but light in the sense of light you can see at the end of the tunnel quite literally. They checked in on me through the speaker thing they use and I asked them when the music would start. I had heard the guy before me saying he enjoyed the Johnny Cash. Music comes on and why oh why do they have this on their playlist, given the actual purpose of MRI’s….guess what starts playing? TRAVIS – WHY DOES IT ALWAYS RAIN ON ME…………
There was no way out. I decided to go with the flow as no other option. It then dawned on me. THIS, is what it feels when you die and your body leaves the earth. I then started feeling all smiley and relaxed and hand on heart, had the Wonder Years song playing in my head! I was so happy at the realisation to know that if you have ever lost a loved one, no matter how tragic the circumstances were or were not, THIS, was how we actually lost them! No, I am not losing my marbles and the wine has not yet eaten away at my grey cells, this is how I know 100% people feel when they die and it felt WONDERFUL! I believe I was in a state of Euphoria, until they injected the dye in my arm to go across my chest to determine where else were lumps and if it had spread in the lymph nodes….felt a cold trickle, assumed this was normal. Once it was time to get out, I heard the nurse say OH, I lifted my head to see that half the pillow was covered in blood/dye. It had leaked and apparently it happens *sometimes* that it comes undone. For a millisecond, I wanted a re-test but luckily, I don’t consider myself a worrier, there was wine at home, that I was sure of!
2 days later, Wednesday 30th July, back to the hospital to hear those words….unfortunately, ‘it’s CANCER’….. Nothing prepares you for this but 2 things had, I just knew it! We were taken into ‘the room’ by a lovely McMillan nurse who had already prepared my folder and heaps of reading material – still left untouched to this very day that I write. Emotions were high, needless to say but she was so, very kind, lovely and informative, spent almost an hour with her!
**** Let me back track a little. Once I found the lump and had a referral, I informed only one person, my mother’s brother in Australia who is a senior Oncologist (how very lucky am I!?). He has been keeping a close eye on everything, gets copies of my reports straight away (everyone is entitled to this if you just ask). He called me the day before the MRI and started talking to me about NEXT STEPS…Chemo etc…HUH!? Towards the end of the conversation, I asked, ‘So, what are the chances that this is just a cyst or a lump that needs to be taken out?’..He said, ‘Uhm, 10, maybe 20%?’…*gulp*. Copious amounts of alcohol resumed.
The night of the diagnosis, I just bawled my eyes out in bed, away from my children. I have a 14 year old daughter who we kept in the loop and shared updates. At first, she was devastated, very, very devastated! I then explained (with my fingers crossed behind my back) that it’s not like they have said mummy has 3 months to live. It’s not like lung cancer where a lung is a vital organ. It’s a boob. People have boob jobs for non medical purposes, day in and day out. Yes, this is different. *Also, my uncle is pleased that the report it ER positive and H2 negative – he explained it as, ‘if there is a cancer you had to choose, this is the one you want’. Like the consultant says as well, she believes if chemo works well, she doesn’t see why I can’t live a long, normal life.
My days and nights have been filled with a mixture of working loads and using loads of tools for DISTRACTION, to nights when I lie there, asking myself, ‘IS THIS REALLY HAPPENING!?’
I was pencilled in for an op this week, Tuesday 12th August but that was if it was going to be a lumpectomy, straight forward removal of the lump. Unfortunately, I need a mastectomy. The MRI showed the total area to be infected is 4cms plus they remove 1cm around the cancerous cells, making it 5 cms in total – too much to dig out and leave a lopsided boob!
We have a family holiday planned (pending arrival of children’s renewed passports). The consultant agreed that the family holiday is important and won’t affect the outcome. It makes the operation slightly outside of the NHS ideal operating time which is within 31 days of diagnosis.
I see her tomorrow, Friday 15th August. We will discuss ins and outs out the operation itself, which is scheduled for 9th September. Chemotherapy usually starts within 3-4 weeks after the operation. It is done 1 day every 3 weeks and by my calculation, that takes us into January.
I did not intend for this blog to be this long but there has been 3 weeks and a bit of going ons that I wanted to understand myself first, before sharing with everyone as I did not have all the answers straight away. I really did not know how to tell people, no script for this at all! The reason I have started a blog, was to primarily share my journey with you all and it dawned on me, that in a few months time, there might be someone, my age, with young children as well, who gets this same news.
I read only 2 articles just this week, relating to other people’s stories. One was shared with me by a friend : http://www.dailymail.co.uk/news/article-2532095/Sky-News-presenter-Jacquie-Beltrao-announces-Twitter-breast-cancer-apologises-stopped-tweeting.html
and the other I found myself. The one I had found, summed this up nicely : Once you’re told you have cancer, you enter a new world that’s suddenly separate from everybody else – no one can possibly understand what you’re going through
Much love to you all and I promise to keep you updated.
Nicole
x
