Tuesday, 27 March 2018

What happens during a breast expander fill?

So today was my final breast expander fill following my mastectomy. A few people have asked exactly what happens during the short appointment so I thought I'd share the procedure with you.

Breast Expander Implant
Firstly, left is image of what my expander implant looks like, this should help you understand how the procedure works.
The outer part of the expandable implant is made of of silicone gel and inside is an inflatable, inner chamber. The inner chamber is where the saline collects as you have your fills. The darker part of the expander that you can see on the image is the valve or port. The saline is injected through this valve and in to the inner chamber, stretching the muscle that is holding the expander in place. Once full, the full expander stays in for around 3 to 6 months before its replaced with a full silicone implant.

The fill procedure may be done by your surgeon or the breast nursing team. Usually the first fill is done in theatre when you have the implant inserted the you return every week for a top up. My expander takes a maximum of 400cc of saline. 250cc was added during my surgery and this will be my third 50cc injection at the clinic.

So here we go, here's what happens during a breast expander fill appointment...

Once in the consultation room I head behind the curtain and remove my clothing - just everything on my top half - no full nudity required! Your nurse will give you a gown to cover up and once you have it on you can lie down on the bed.

Get comfy and relaxed, you don't want to have to move midway through the process.

Once your comfortable the nurse will use a special device called a 'Magna-Finder' to locate the valve in your expander.

Locating the breast expander port

The nurse will move the Magna-Finder across the breast and as she does the vertical magnet will be pulled towards the magnet in your expander. When it is completely vertically straight, its in the correct place. The nurse or surgeon will then mark up the injection site - usually using a biro!


A larger needle is used to draw the saline

Next the nurses will prepare the syringe. Everything is sterile and is laid out on a trolley. To fill the syringe with the saline, the nurses use a large needle. Do not worry about the thickness of this needle! This is just the needle that is placed in to the saline solution and then as the nurse pulls up the syringe plunger the saline is drawn in to the syringe.

The needle they use to fill the syringe is much wider than the needle that goes in to your body during the procedure. In fact the nurse told me the needle they use is just the same width as a needle they use to give immunisation jabs.

Once the syringe is filled with the correct measure (this final fill was 50cc for me) the nurse will switch the to the finer needle and you're ready to go.

Lining the needle up to the pre-marked area, the nurse injects the saline directly in to the implant. The fill takes less than two minutes and for those or you that aren't queasy, you can watch the clip I recorded of my final fill below.

Friday, 16 March 2018

What To Pack In Your Mastectomy Hospital Bag

Now that my surgery is over thought it might help for me to share the things that I needed during my stay in hospital.

Try to remember that after your operation your arm movement will be really restricted and you'll have drains in place. Here are my top takes:

For the Hospital

Slippers - make sure these are non slip. The last thing you need is a fall when you've just come round from anaesthetic.

Dressing Gown - in the UK you are usually asked to wear your dressing gown to walk to theatre before your operation.

Underwear - an obvious one I guess but if you are having DIEP flap surgery then big Bridget Jones knickers that go over your tummy scar are best.

Front Fastening Post Surgery Bra
- It is virtually impossible to wear a backwards fastening bra after surgery because of your restricted arm movement. In the UK your breast cancer nurse will provide you with one front fastening bra the day after your surgery. I've found this the most comfortable post surgery bra I have and I sleep in it every night at the moment as it supports the weight of my expander.

Button Up Pyjamas - as soon as I woke up in my hospital gown I wanted to get changed. There was blood on my surgical gown and I needed it off. I waited for help, but again, ensure its front fastening and button up so you can get in and out of them yourself. I bought a pair a size up as I knew that I would be swollen and carrying my drain around. Elasticated waist is a must too so that you can pull your pants up and down easier.

Drain Pouch Bag - Literally THE best thing I had in my bag. I've heard so many stories of women having to pin their drain bags to their tops, their bras etc but I researched and got myself a Drain Dollies bag. I just had a single mastectomy so I only needed one but if your having a bilateral mastectomy then get two - one for each side.

Mastectomy Pillow - When I came round after my op I was quite uncomfortable under my arm - possible due to having the sentinel node biopsy. Luckily I had ordered a FREE mastectomy pillow from Jen's Friends. Again I only needed one but if your having a double mastectomy then get two.

Snacks - If you've read my Mastectomy Day Diary then you'll know that I had to wait for ages to be fed after my operation. Pack some healthy snacks in your bag so if you're feeling peckish outside of hospital meal times you don't have to wait on someone else. Make sure they're individually wrapped if you can - for hygiene.

Straws - lifting a cup to your mouth is hard so straws are a must. The hospital will probably have some but I packed some in case.

Medication - always take any regular medications with you and hand them to your medical team so they can ensure you are taking everything you need to whilst you are in their care.

Toiletries - again seems like an obvious one but the things you are most likely to forget! Toothbrush, toothpaste and wash things. I took face wipes so I could freshen up through the day.

Make Up - Some of you might thing this is daft but I wanted to feel more like myself for visitors and for the journey home.

Mobile Phone & Charger - I took my own portable charger in case there were no sockets available. I hate being out of contact with my family so my phone was a must.

For Heading Home


Front Fastening shirt - again this is for ease - to assist with your drains and with your arm movement. It's impossible to pop anything over your head because you cant lift your arms. Again I bought oversized because of swelling,

Elastic-Waisted Pants or Leggings - do not make the mistake of taking button up jeans. It's impossible to do up the buttons and pull up the zip! Elastic pants are easy to get into and out of and wont have you splitting your stitches.

Slip-on Shoes - avoid laces and anything that needs effort to pull on. Bending is hard and sore so the easier to put on the shoe, the better.

Pillow
- I took a normal bed pillow to put over my front and fastened the seat belt over that to protect myself. I could feel every single bump in the road as we drove back.

When You're Home

Pillows, pillows, pillows - I had to sleep upright for two weeks post surgery and for some people its longer. It can be really difficult to get comfy. Thankfully my painkillers knocked me out most nights. What pillows are best is really down to you. Some people prefer v-shaped pillows to prop them up. I personally used two really firm memory foam pillows vertically behind my regular two duck feather bed pillows.

Prepared Meals in the Freezer - you must remember to eat to stay strong. Having some meals already stocked up is a winner as you won't be able to lift and cook as usual.

Medication
- I kept all my meds close to me in a toiletry bag next to my bed. It's worth remembering that you are unlikely to be able to open anything with a child proof cap so try and transfer anything in to an easy access container.

Thursday, 15 March 2018

UK Benefits - What Can I Claim if I'm only on SSP?

As if worrying about your health isn't bad enough when you're diagnosed, we then find ourselves in a constant state of worry over our finances. For me it was a huge burden because I am the sole income earner in the family. I have a great job but having 3 surgeries means I've been signed off for a few months and unfortunately being new to my job means I'm only receiving SSP.

First of all I found a great website called Turn2Us that allowed me to calculate what benefits we might be entitled to. Still I was worried because I would still be employed just on a very low income so I wasnt sure if we could even claim for benefits.

Luckily following my Dad's illness I was aware that Macmillan had a help line that would be able to assist and give me some guidance. The helpline is fantastic, it offers help and support on everything from your illness and treatment through to employment law and finances.

 Macmillan Helpline: 0808 808 00 00 

Macmillan took all of our details and as we were in a qualifying area for the Universal Credit roll out, we would be able to apply.

You can find out if you’re eligible by using the Citizens Advice eligibility checker

The application process was relatively simple for us as we're online savvy. Just head to the Universal Credit site and click start. You'll be asked loads of questions about your circumstances, your earnings, savings, number of children etc. If it's a joint claim then at the end of your application you will be given a reference number so that your partners application can be linked to yours. They will need to complete the same questions and their income and earnings will also be taken in to consideration.

The amount of Universal Credit you receive will be made up of a standard allowance and any extra amounts for children, disabilities or health conditions and if you need help paying your rent.


STANDARD ALLOWANCE



ALLOWANCE FOR CHILDREN




ALLOWANCES FOR DISABILITIES & HEALTH CONDITIONS








You may also be able to claim money to help with housing costs - it's all dependent on your age and circumstances but it can cover rent, mortgage interest, some service charges and interest on loans secured against your house.

The final step you must do to complete the process is verify your identity. This was the only thing that really caused us issue as we had to have our Passports and Driving Licences available to photograph. Chris had lost his passport and I couldn't find my driving licence so we both used different apps to verify. I used the Post Office Gov.UK Verify app whereas Chris used the Experian Verification.

Once you (and your partner if its a joint claim) have completed your online application you will then need to call the Universal Credit helpline on 0800 328 9344 to arrange a face to face meeting at the Job Centre. This appointment is for you to have your ID checked again and you will each be given a claim number.

Each time you receive an updated sick note (now known as a 'fit note') from the doctor you will be required to log it on the Universal Credit website and then physically take it in to your local job centre for them to verify and approve. You must do this otherwise your claim may not be processed. Once you have been your online journal will show as complete. I took mine to our initial meeting they just check it and then hand it back, then you'll need to send it in to your workplace so you still get your SSP.





It takes around 5 weeks for the first payment to come through and was paid direct in to the bank. Our Job Centre advisor was lovely and explained that if we needed help to pay our bills or cover any other costs while we were waiting for our first Universal Credit payment then we could do that with him.

In addition you can also apply for free school meals for your children and a council tax reduction while you are claiming Universal Credit. To apply you will need to contact your local authority. It's worth noting that claims are only backdated to the date you apply to try to do this as soon as you apply for Universal Credit.

If you have any questions at all just leave a comment below and I'll get back to you straight away.


Wednesday, 7 March 2018

Mastectomy Results Day

I wake up apprehensive and still tired. Our appointment isn't until 3.10pm which just prolongs the agony. We arrange for Grandma and Grandpa to pick the children up from school and head off. It's a strange journey. My husband and I hardly speak, we just listen to The Greatest Showman CD for most of the journey. When 'This Is Me' come on the lyrics hit me.

I've learned to be ashamed of all my scars
Run away, they say
No one'll love you as you are...

These past few months have been so tough. I've piled on weight which hasn't helped but more importantly I've lost myself. I feel different, less confident and despite my positive and bubble personality, I hate what I see when I look in the mirror.

Soon enough we arrive in the car park, we hold hands as we walk in to the hospital. I give my name in at the desk and head to the usual waiting room. My heart begins it's usual pounding. I hate the waiting, its agonising. For me not knowing is worse than knowing. I hate the unknown.

Despite our usual hour in the waiting room, today we are called out of the packed waiting area after about 10 minutes - this never happens.

"Leanne Nash"

I real of my date of birth and head in to see Mr M. Today as well as my consultant and two nurses there is another man in there, he's introduced as the Lead Registrar. I'm asked firstly to head behind the curtain and take my top clothes off.

Mr M says everything is looking good. They had added 250cc into the expander during surgery. Today he would add 50cc more. The needle is huge, so much so that Mr M makes a joke about it being like the needle from Pulp Fiction.



Looking at that image though, Id say my syringe was definitely bigger. Don't panic though ladies - the needle itself is no bigger than the needles they use to take blood.

It's a strange sensation as the saline goes in. The expander moves around inside as it's filled, it's uncomfortable but it's nothing compared to what I've been through so far. My heart is still pounding, wondering the outcome of the results so the syringe moves up and down as my chest moves.

Once complete I get dressed and head back out beyond the curtain. It's time.

"Ok, we've got the histology results back. There was more DCIS in your breast - another 10cm - so in fact it was basically right through your entire breast...

...BUT... (I cling on to this 'but' for what feels like an age, awaiting my fate)

...we have managed to get it all. We've discussed your case in the MDT meeting this morning and because no invasive cancer was found and the lymphnodes we took were clear, you will not need and radiotherapy or chemotherapy."

THANK GOD. SCREAM IT FROM THE ROOFTOPS. DING DONG THE CANCERS GONE.

He continues to tell me I definitely made the right decision having the mastectomy. There was always a chance that there would be no further disease at all and that my breast could have been saved but in my case my whole left boob had been riddled.

The only remaining treatment -  should I decide to take it is a tablet called Tamoxifen. Mr M tells be approximately 13 times that one of the main side effects is vaginal dryness. No word of a lie - they are pretty much the only words I remember from that discussion. And, whilst vaginal dryness is certainly no laughing matter, I did struggle to contain my giggles.

Rather than deciding what to do straight away, I'm given a leaflet to take away and decide over the week what to do.

For now though, with my aching filled up boob, we head home with the best news we've had in 6 months.

Another Sleepless Night

I can't sleep... again. Tomorrow is results day. I find out what histology has come back with from my bad boob and my lymphnodes. There's every chance it could come back completely clear but there's always a chance that they find something nasty - an invasive cancer. Even if it's clear there's still a way to go with treatment - maybe radiotherapy but definitely tablets for 5 or 10 years since my cancer is fed by Oestrogen.

I feel sick to my stomach but I'm really trying to stay positive. Hopefully I will get some sleep tonight.

Tuesday, 20 February 2018

Mastectomy Day Diary

Midnight
I stayed up late to have a bowl of my favorite Weetabix Minis Chocolate Crunch. Now matter how hard I try and so nervous about the operation that I can not sleep. I listen to my Calm app but it doesn't work. Chris lies next to me tossing and turning too. I just remember that I don't need to worry - I'll be put to sleep tomorrow anyway so tiredness isn't an issue!

2.00am
Still cant get to sleep. Tomorrow is so huge. What if it all goes wrong? What if I don't wake up?

6.00am
I wake up to my alarm. I feel like I've only just got to sleep. My eyes are heavy. I get dressed and re-check my hospital bag. I think I have everything. I can sense Chris is nervous too.

7.00am 
After de-icing the car we set off. We're even nervous talking to each other on the journey. We make small talk. It's so odd.

7.30am
We arrive at the hospital at and suddenly I feel strangely calm considering what I'm about to go through. There are 3 other ladies in the waiting area also having breast surgery and lymph node biopsies today. Chris and I sit in the waiting area, the Winter Olympics is on the TV.

8.45am
"Leanne Nash" I'm called in to the anesthetist first. She puts name bands on both of my wrists and  runs through the usual questions. I confirm the operation I'm having, we discuss past surgeries and my DVT history. All good, I return to the waiting room.

9.15am
"Leanne Nash" Mr M, my surgeon calls me through. He apologises that he may smell of garlic because he was celebrating Chinese New Year yesterday. I take my top off and he marks me up with his marker pen. The comical arrow pointed to the riddled boob. He asks if I have any questions and we talk about lymphnodes. He says he will try and take the sentinel nodes from the main incision so hopefully I'll just have the one scar.

9.30am
"Leanne Nash"
The nurse calls me in to go through everything again. Check the op im having etc. She measures my legs for the DVT stockings. I'm second in to theatre so it will be later on this morning that I'm called. She passes me my tights and down but says I don't need to change just yet so i keep hold of them.

10.30am
"Right ladies. Those you that are having the dye injections for sentinel node biopsy, would you like to follow me?"
I panic because I'm not changed in to my gown. The nurse tells me not to worry but to take everything with me in case I need to go straight to theatre from the radiology department. There are 4 ladies, each with their husbands in tow. We are told to follow two young boys aged about 16 or 17 down to the clinic. They speed off. It takes at least 5 minutes to walk, and we struggle to keep up with them which they clearly find hilarious. I hear them laugh and say they nearly lost all of us. As we walk past the Cafe I can smell bacon and my mouth waters, I'm so hungry!

We are taken to a small waiting room. One by one we are called in. I am the last. Since Chris cant come in I send him off to the cafe. No reason why he should starve himself too.

I go in and the nurse asks my name and date of birth but my brain doesn't work and I forget what shes asked. We have a good laugh.They explain that the needle needs to go in to the cancer tumour location. I explain that I have DCIS but I've already had two surgeries to remove it. We decide that injecting in to the area closest to my scar will work best.

What is a Sentinel Node Biopsy?

To explain, when you have cancer, the sentinel lymph node is the node that the cancer would get to first if it was trying to spread. Examining cells in these first nodes can give your doctor a lot of information about the state of your cancer. During the sentinel lymph node biopsy, they inject dye in to the cancer site. The dye then moves from to the injection site in to the lymphatic system. Blue nodes, or "hot" nodes (nodes with high radioactive counts), are where the dye hits first, these are called the sentinel nodes and all hot nodes are removed and sent to histology for testing.

The injection doesn't take long and then I'm sent back to the waiting area. One of the ladies already in her gown is told she will be going straight to theatre. We are wait for someone to come and take us backup to the ward when I hear the phone ring in the office. I hear my name repeated back and the word theatre. Oh god, I must be going straight to theatre too. I panic! I haven't even got my gown on, it takes about 20 minutes for me to get the DVT sock on usually and Chris is in the cafe!!

I sit there for a few minutes expecting someone to come and let me know but no one does so I knock on the office door. "Excuse me, did I just hear that I'm going to theatre. Do I need to get my gown on?" "Oh yes, sorry love."

The lady that did my injection overhears, she shows me to the changing room and volunteers to go and collect Chris from the Cafe.

I rush as I get ready but feel calm again when I hear Chris' voice outside. I stuff my clothes and boots in to my bag and don my dressing gown and slippers.

A man from theatre arrives with a wheel chair and we head off. The hospital is huge. We go through what feels like hundreds of corridors and up in a lift. Chris and I kiss and say goodbye and I'm wheeled in to the theatre recovery room. Apparently there is a lot of work going on in the hospital so the waiting and recovery rooms are combined fora few weeks.

11.30
I'm checked in at the desk. 2 theatre staff check my name, date of birth and NHS number against my wrist band. There are a number of people in the room, some of which are recovering from surgery and some (like me) waiting to go down. Each person has a member of the medical team assigned to them. Mine is the guy that wheeled me here. I recognise another as the anaesthetist from my last surgery.

12.00
I'm still waiting, making small talk with my new friend when a  new lady is brought back from theatre. The curtain next to me is drawn and i can here the team trying to bring her round. All of a sudden there is a huge commotion. The lady is attempting to get out of bed. They call for assistance, people are running to physically pin this lady down. She is becoming really aggressive shouting at the nurses to get off her and at one point almost pulls her drain out - she's had breast surgery too and I quickly realise that it was one of the other ladies I'd seen up on the ward earlier. After about 20 minutes of constant struggle it becomes apparent that this lady has become aggressive after previous anesthetic before - its on her notes.  I'm on my own, just listening to the poor lady who sounds so scared and the staff trying desperately to calm her down.

12.20
Mr M, my surgeon pops his head around the curtain and lets me know he won't be too long. He takes my notes from the back of the wheelchair that I am still in so he can refresh himself on my journey and diagnosis before he begins.

12.30
The poor lady next door is still fighting so one of the nursing team pops over to reassure me that the lady is ok. Its nothing they have done and it wont be too long now 'til I go down.

12.40
Finally I'm on my way to theatre. Only it appears that I have put my gown on back to front so I have to quickly get half naked in the theatre anesthetic room while everyone looks away. I'm mortified!

Next job is to get the cannula in, I pump my fist to try and assist. Usually I have great veins but since I haven't had a drink for over 12 hours it seems they have shriveled. They get one in but when they try to flush it, it becomes clear that it's not in the right place. They quickly take it out and ask me to pump my first again. As she tries a new place I can feel a lot blood dripping out of the the place shes just tried. The lady realises and asks someone too pass some gauze - there must be blood all over the floor! Soon it's in but it's in a really awkward place at the side of my wrist.

The oxygen mask goes on and the anaesthetic goes in.

SLEEP

15.00 As I start to come around I glance at the clock. I'm told everything went well. Everything feels very numb and I have one drain in place. I'm given a cup of water and I ask for more. I'm so thirsty. I drift back off to sleep.

16.10 I wake up again and ask for more water and more pain killers. I'm really sore. I tell them I'm hungry but they cant give me anything until I'm moved to a ward and at the minute there are no beds.

17.30 I'm still here. Still hungry. They keep me watered but I really need food! People that have come out of theatre after me have already left for the ward. I ask the nurse of they have contacted Chris to let him know I'm ok. She said they usually do that on the ward. I explain he'll be really worried so she goes to get the phone. It won't connect! Typical.

18.00 Still here!! I ask them to try Chris again. This time they leave me with the phone and I get through. Chris sounds so relieved to here my voice. He'd been calling different parts of the hospital and had been really starting to worry. He'd left me over 6 and a half hours ago for an op that should have taken only 2 and he had been thinking the worst.

19.15 At last I hear that I'm moving. I'm the only one left on the recovery ward and I still haven't eaten. Apparently there are no beds on the main ward so I'm going to my own room in the private part of the hospital. Result! Lets hope they have some decent food there because I honestly feel like I'm being tortured. I ask to call Chris again so he can make his way in.

19.30 I arrive. Finally!! They leave me on the theatre bed and wheel me in. I have an en suite room and a TV (although no remote!) I ask them to pass me my mobile so I can call my mum. I tell her I'm ok then buzz for food. They bring me some soup and a sandwich which I devour in minutes. I decided to get up to go to the loo so I pop my drain in my special Drain Dollies drain bag and head in. I'm so glad I have my own room.

20.00 Chris arrives. I'm so relieved to see him. He brings me more food - yay for hospital grapes! The children are at his mum's so I know he cant stay long.

21.30 Chris heads off and I ask for more painkillers. I'm given oramorph but it doesn't agree with me and soon I'm feeling very sickly. I keep drinking water to take the nasty feeling away. My obs are checked and all is well. Although I've slept so much in the recovery are that I'm wide awake.

02:00 After a few toilet trips,more obs and pain killers and a lot of TV I finally turn my light off and head off to sleep.


Wednesday, 14 February 2018

MRI Brain Scan

This morning I headed to hospital for my brain MRI. It was all booked in so fast that I never had a letter telling me what to expect. I'd obviously recently had the breast MRI so I knew about the scanner itself and the noises to expect but I wasn't sure if I would need the contrast dye this time.

This MRI is in a different hospital to the other. I filled out the usual form and sat with my mum in the waiting room. I don't feel nervous at all because I honestly feel that everything that is happening to me with regards to my brain is all down to the stress of everything that's going on.

The nurse calls me through and I'm shown to a changing area. There are no doors just a small - doesn't reach the ends of the rail - curtain. I'm told to take my clothes off, just keep my knickers on and pop the gown on. I'm fuming with myself that I forgot my pyjama bottoms this time. I explain to the nurse that the bra I'm wearing as no metal in it so she says I can keep that on too.

I ask her where I should leave my clothes and she says just leave them where they are. Oh great - behind the tiny surgical curtain - very secure.

I follow her in to the MRI room and she lowers the scanner bed, there is a big window opposite where I can see through to the area where the radiology team are.

This time I have to lie on my back with my head positioned in between two head guards. The radiologist hands me ear plugs one at a time to put in my ears. Then she wedges my head in place with, what feel like sponges, over each ear. She then places another guard over my face. Goof job I'm not claustrophobic. I actually look like my head is in a small prison. As I look directly upwards there is a small mirror in the cage that is reflecting the image of the window so I can see the radiologists in their hub.

Squeezey 'emergency button' in hand, I am moved in to the scanner. No pillows today and my back is not happy to be lying flat with no support. I decide to close my eyes and pretend I'm lying on a beach somewhere. The noise of the machine is so much more intense today without any music. I wish I had the headphones on again. The first scan lasts around 7 minutes and I'm relieved there's no cannula or dye today. "Scan 2 about to begin" the radiologist says across the microphone from the other room. My head wants to nod but I'm wedged.

This scan seems louder but shorter. Then the voice is back "Ok, we'll just take you out now and inject the dye." Whaaaaaat? First time anyone has mentioned this. I'm assuming now that this is what always happens during this type of scan and that by me telling the nurse I'd had an MRI before, she assumes I know this already.

I remain wedged, and I'm asked to hold my right arm out. Tourniquet on, I begin to pump my fist. She struggles to find a good vein but after a few minutes she's in but boy does it sting! The needle feels horrible in my arm, so uncomfortable, it stays in for ages as she pushed the die into my body. Finally it's out, plaster on and I'm back in the tube. By now my back is absolutely killing me.

They tell me to close my eyes for the final scan - I had done that all the way through anyway but now I'm curious as to why. If anyone has an idea then please let me know in the comments. The loud churning of the machine begins again. Constant.

The silence eventually takes me by surprise. I open my eyes. Glance into the mirror above to get some kind of acknowledgement that its all over. It doesn't seem like anyone has noticed! They are talking, another is on the phone. Then I panic, look for clues in their body language - maybe they found something, are they talking about me? I hate the paranoia that cancer brings to your life.

I needn't have worried, the nurse is back in the room and I'm brought out of the tube. She removes the head prison and the sponge and says I can get up. Easier said than done, my back appears to have seized up and they have to pull me up like an old lady! As I stand, my legs buckle. I'm so stiff.

I head back to get changed and head home.

I yawn the whole way home and even though it's only lunchtime, I climb in to bed as soon as I arrive back. I don't know what it is with MRIs but they just wipe me out.

Night night x









Monday, 12 February 2018

Crying Myself to Sleep

It's 1.30am. I can't sleep. This time next week my boob will be gone. It seems the sadness has hit me all in one go. I've been putting on such a brave face but I'm so scared. My life just seems to keep changing and none of it is ever for the better.
I think I'm missing Dad so much too and his death seems to be hitting me all over again. I wish he was here looking out for me. Doing research for me - he'd have been seeking out all the information I needed and be plying me with answers and best steps. My heart is completely broken. I'm in a constant state of grief.

I cried earlier on too - in Mcdonalds of all places. I saw Dad's wedding ring on mum's finger and it took me by surprise - I just burst in to tears. My emotions are all over the place. I long for some kind of normality in my life instead of being in a constant state of worry. Worry about the cancer, has it spread, every pain, every twinge, and the brain MRI scan coming up... And the money situation too. How are we ever going to get through if I'm not working?
The tears are too much, I can't type anymore. Goodnight x

Saturday, 10 February 2018

Meeting the Neurologist

So as you know. I was referred by my GP to see a neurologist because my brain has been going a little crazy recently.

 I check in myself by scanning the appointment letter and head around to the waiting area. There are screens around the room that list each clinic and whether it is on time or delayed. I squint to see 'NEUROLOGY OUTPATIENTS - CLINIC 5 -29 MINUTES'.

29 minutes waiting time is less than we usually wait in the breast clinic so I'm unfazed. Another TV is showing the Winter Olympics opening ceremony - without sound. Whenever a patient is called their is a doorbell sound and their name comes up on the screen along with the clinic number they should go to. Very modern!

An hour passes and I check in with reception to make sure I haven't been forgotten. The screen is still showing 29 minutes delay but it's now 11.30 and my appointment was supposed to be 10.30. The receptionist puts my details in to the computer - yes there is a 29 minute wait. I explain I'm aware of that but it's been 65. She looks at me confused and tells me its a very busy clinic. Thanks for that Susan, I'd never have guessed.

Just as I'm about to head to the toilet, the bell chimes and my name appears on the screen. Typical.

The doctor apologises for my wait and explains that he's on call and keeps getting bleeped. We run through the GPs referral and my symptoms and he makes lots of notes on my file. We talk about my cancer diagnosis and losing Dad. I tell him I'm sure there's nothing sinister going on and it's just stress. He agrees it's a very stressful time for me.

He asks me to move to sit on the edge of the bed and he does various visual tests on me with his light. He checks my reflexes and we do various push and pull exercises. At the end he tells me that I do appear to have a slight weakness on my left side.

Given all of the symptoms and the tests he has done he wants to send me for an MRI just to be sure there isn't anything untoward causing my mental blips. He explains it usually takes 2 weeks to get an appointment so it will likely happen after my mastectomy now.

I leave feeling positive. I'm sure the MRI will come back fine but it will be good to have it done just to confirm it's all definitely clear.

Thursday, 8 February 2018

MRI Results and Psychologist

Finally some good news. It looks like the MRI has come back clear on the right side. The full report still needs to go through MDT next Wednesday so my operation will now take place on Monday 19th February and even better news, Mr M will be looking after me from now on and will be doing the surgery himself. I leave the breast clinic and head upstairs to meet Mr B - the psychologist.

I'm strangely excited to be seeing a shrink but I have no idea what to expect. As I sit and wait I imagine laying on a chaise longue and pouring my heart out. In reality, I walk in and sit on a chair opposite Mr B. He's friendly and noting my obvious disappointment and the lack of a movie style set he apologises.

He explains how the session works and asks me what I hope to get from the session. I explain I want to try and separate my cancer journey from my Dads. I tell him I am still grieving. I tell him I want to ensure that all my decisions are made based on fact rather than fear. I mention my work worries too. We talk for over an hour and he tells me he's impressed with how I'm already analysing each step within my situation, taking my career skills and using them to help me along my journey.

The session is such a positive experience. It's so nice to talk to a stranger about my problems, my life - someone with no interest other than helping me, you can talk without feeling you're burdening.

I leave on a high. He knows Im making the right decision for me as far as the risk reducing surgery but he suggests I see him again following my mastectomy to talk again.

Wednesday, 7 February 2018

Work Mates Rule

So after seeing the doctor yesterday I was feeling a bit down. I had arranged to meet up with my team from work. They very kindly made the drive to where I live and we had a lovely dinner together. At the end of the evening I was presented with a huge amount of really thoughtful gifts; pyjamas for hospital, colouring books and pencils to help with boredom, toiletries, chocolate, biscuits and quite possibly the best pre mastectomy boob cake I ever did see. 

I'd told the guys that I thought we should have a bit of a party for the left boob ahead of my mastectomy and this just made me roar. A good sense of humour and good old laughs are often the best medicine through tough times. They even made boob straws for us all to drink from!





So lovely to see everyone. Thank you so much - what a fantastic team I have. x

Sunday, 4 February 2018

What Happens During a Breast MRI Scan?

I arrive at the hospital 15 minutes early as requested. I check in at reception and I'm given a form to complete. The form asks lots of questions about previous surgery and any metal work I have in my body. I do have a metal plate in my left wrist but we already know from the mid consultation phonecall that it's not an issue for this scan.

Almost immediately I'm called through, and I'm led to a changing area. I don the hospital gown that I have become so accustomed to over the past 4 months. I'm wearing jeans on my bottom half but obviously there's metal buttons and zips on them so very cleverly I brought a pair of pyjama bottoms with me to protect my modesty whilst in 'the tube'. 

Once I'm changed I head back out. The radiology nurse puts me at ease. She passes me a key and I pop all of my things in to a locker. Next job is to have my cannula inserted. Everything is explained, I'll have a scan first then a special dye will be injected through the cannula and I'll be scanned again.

The dye will help any potentially cancerous breast tissue show up more clearly. Cancers need an increased blood supply in order to grow so on a breast MRI scan, the contrast tends to become more concentrated where there is cancer growth. These usually show up as white areas on an otherwise dark background.

The MRI room is huge. I'm told to lie on my front on the 'bed' with my boobs in the holes. Easier said than done. I put all my weight on the pillow in front of me, the pillows fold and collapse and I nearly topple. Once in place, boobs hanging, the radiologist turns a dial on the side and my breasts are clamped into place. She puts a wedge at my knees so my legs are resting against it, the bottom of my feet facing upwards towards to the top of the scanner. She tells me this will help my back.  

Picture me, laying flat on my tummy, arms outstretched in front of me like superwoman. I don't feel like superwoman but maybe I will once I've won my fight.

The headphones are placed on to my ears and the bed moves me head first in to the scanner. Once I'm in place, the radiologist appears at the other end of the tube. Facing me she attaches a long spiral tube in to my cannula. It looks like the cable from an old fashioned phone. It's in. The radiologist reminds me it's going to be very noisy and she leaves me on my own.

The music starts but the MRI machine is so loud I can hardly hear it. So many different noises, loud clicking, alarm sounds... all whilst I'm trying to stay calm and still.

I focus on staying still. Big mistake. The moment you think about staying still, really concentrate on it, you become paranoid about moving. So then I'm thinking I have to keep my chest still... but how... do I stop breathing? Immediately my heart starts pounding with panic - Oh God! Now I'm breathing really fast, my chest must be going up and down so much. Shit! Be calm, be calm. Listen to the music. I relax again, breathing slows. I zone out from the noise. 

The music was ok... Take That, A Little Less Conversation, then wait... what? Is that Eamon? The song F*ck It (I Don't Want You Back) is on? It plays for about 40 seconds before it's skipped on to be replaced by Enrique Iglesias. I picture the panic as the radiologist's Spotify played the inappropriate song. I chuckle to myself... which makes me panic about moving again... my heart goes again and I cant control my breathing. God this is so hard! Keep still woman!

After a what feels like forever, there is silence. A voice comes through the headphones, "Dye injection in 10 seconds." My right hand lurches as it goes in. It's a strange feeling, a whoosh of cold at first but then slowly I can almost feel it going round my body. It makes me feel warm. My hand tingles, arms still stretched out in front of me, above my head.

My shoulders are aching now. I cant wait to move my head, my neck, my arms. The noise intensifies again. I've been in this awful position for at least half an hour. 

Finally it's over. The nurse returns. I tell her my heart was pounding and I was panicking that my breathing was jiggling my boobs. She laughs and tells me I did really well. I grab my things from the locker and we head in to the blood room again so she can remove the cannula.

It's over with. I head back to the car with a very flushed face. I giggle like I'm drunk, I'm so tired and I yawn all the way home. Let's just hope the results show my right boob is clear. 

*Fingers Crossed*

More waiting.

Did you know?
To enable a clear and successful MRI screening you need to be between 6-12 days out from the start of your last period. 


Tuesday, 30 January 2018

Getting What I Want

Today we headed back to the hospital to meet the new consultant. We waited as usual but today I didn't have the nervous feeling in my tummy. I was back in fighting mode.

"Leanne"

My breast nurse calls, I confirm my details and head in. Mr M introduces himself, shakes my hands. "I know you don't know me," he says, "but I know everything about you and your journey. I am part of the MDT (multi disciplinary team) where we discuss your case each week. I know that you have had a pretty rough journey so far and things just keep getting worse for you." He explains that Tracy my breast nurse has advised that since the very start I had wanted a bilateral (two boobs) mastectomy then goes onto explain he is willing to listen but there are procedures that would need to be followed.

"Actually," I say. "I have done a bit of a 360 on that for now." I explain how I've researched A LOT and actually I am willing to go down the silicone route initially and see how it goes. I have already been referred to the psychologist about the risk reducing surgery but it is definitely the route I want to go down eventually.  He agrees that I should have the diseased beast done first because if I hate the cosmetic result and I've chosen to remove my 'healthy' breast then I may regret it forever.

I run through my questions and he is straight to the point answering every one with complete raw honesty. He looks me in the eye permanently, I try and do the same but that always makes me feel uneasy - like I'm in some kind of non blinking staring competition! He seems blunt and at first I don't know if I love him or hate him!

I explain how I am completely 100% convinced there is something going on in my right breast. He says he gets it, my instincts have been completely correct throughout and that combined with the false 'clear' ultrasound and mammogram on the left breast, he would feel the same. I ask about an MRI. He tells me he believes it's unnecessary. I ask again "Can it be done just to confirm? Otherwise I will always be in a constant state of panic about it."

"Yes, I'd be happy to refer you just for piece of mind."

Relief.

I then point out that I have metal work in my wrist so can I even have an MRI anyway?! Good question. Mr H doesn't know but he'll find out. I'm told that MRI scans can usually show a false positive result so having the scan would potentially mean the operation booked for 8th February may need to be postponed.

I look at Mr H but he's picked up his mobile and appears to be texting! What the hell!? No wait, he's calling someone - the radiology team. He explains my diagnosis, that I need an MRI but I have the plate in my wrist. He asks me dates from that op. Then I hear "Great news, thanks."

Wow, this guy gets shit done!! Any other doctor would have dictated a letter, had his secretary mail it over and Id have waited a week to find out if I could even have the scan. It was at that moment I decided I really liked the guy. He also agreed to recommend me for gene testing too. Brilliant.

He lets me take away a copy of my histology report and my nurse runs me through everything from the last surgery properly. She tells me that I am completely within my rights to decide which surgeon I want to perform my mastectomy. I ask who she would choose and she eyeballs the door that we have come from. I tell her I want him to do it - Mr M - definitely.

I leave the hospital for the first time feeling confident. Finally I'm getting somewhere.

By the time we get home the phone is ringing. It's my breast nurse - she needs to know the start date of my last period. Luckily I track my dates on the Clue app on my phone so I tell her exactly when it was - 18th January. She lets out a sigh and says she'll come back to me.

By 4pm the radiologist has called. They can fit me in on Saturday morning. That was fast!