Thursday, 22 December 2011

So to cut a long story short - we were not seen yesterday. I was up at 5.30am, we were all in the car at 7, and in Manakau at 8.45am. His receptionist told us Dr Flint was called into Emergency Surgery and will be in at 11am, so we had to kill 2 hours.
2 hours later - (at this point Max and Harry (espec Harry) were loosing it) we go back into his office... "Hes not coming - still in surgery".
Angerangeranger, stomp out - Simon is livid, the kids are going mad. Drive all the way home and Crash out.
Simon is upset all day - even more so than me. Right up till llpm that evening hes still mad. I feel bad because Simon is not the type to get wound up. Im guessing theres just a lot of people that want answers - is missing this appointment going to prolong my treatment? Espec when my tumor is at such a touch and go stage - likely to spread into my organs at any time - I feel like a time bomb.
We are flying down to Christchurch today to spend time in Reefton with all my Dads side of the family. Looking forward to relaxing a little - hopefully! Holidaying sometimes isnt easy with 2 under 2 x

UPDATE: Doctor Flint has just phoned and spoken to simon, Will be seeing him mid Jan for an appointment. The Surgery will take place 4-6 weeks after the radiation has finished so my skin has heeled 100%/ and Ill be in hospital for 7 days.  Great, now we know something and we can start planning with our families who can come and help out for what stages. Time to catch this flight x

Tuesday, 20 December 2011

I had my appointment today at the Radiation and Oncology Department at the Auckland Health Board. We had no idea that it was an actual Cancer unit. Maybe I should have prepared myself for walking in - it was all "Cancer". Ladies with Headscarves, sick people in wheelchairs, cancer pamphlets everywhere about support groups, Counseling Services and the like. Maxwell was on fine form as usual - squealing at us because we wouldn't let him take off up the corridors. Anyhow - I had my Appointment and was told all the facts I needed to know in regards to half of my treatment.
I have to undergo Radiation Therapy - which is EVERYDAY for 5 weeks! I do get weekends off, but this is a huge pain in the ass. Im guessing this is where we will need a family member to come up to Auckland to help out, its just not possible to take both Maxwell and Harry in and expect them to sit there while this happens everyday. This all gets done at the Oncology department itself - which means that I have to drive into the city everyday - so we need to buy another car! I do have the option of having someone from the Cancer society picking me up everyday - but im not into that at all. I may have cancer but im not immobile. I would like to keep some dignity (not that having cancer is undignified - if you understand what I mean.
Anyhoooo, they went through the information about Radiation itself - The effect it will have on me, tiredness, nausea will kick in after a couple of weeks - rash like bad sunburn. Possible complications include nerve damage and numbness - possible long term effects such as mobility and joint issues on my knee. They need to make sure my long bone in my leg, is not affected by the radiation. There is also a small risk of the radiation therapy causing another cancer - I know this makes no sense of even having treatment - but the risk was only 1% and the doctor said that the risk of NOT having radiation treatment would be disastrous. 
You have to put faith in your doctors right?
So this is just %50 of my treatment. They other half is obviously surgery - which we will see the famous Dr Mike Flint tomorrow morning, who is apparently "The Man" in NZ to do these type of Cancer Surgeries. Every doctor I have seen so far has nothing but goodness to say about him. So far sounds promising. The surgery comes 4 weeks after my radiation treatment has finished. They need to give me 1 month of rest before the big day.
Besides all this I have been in mostly happy and peaceful spirits, I still havnt had a cry either! We went out for an awesome Italian meal last night, just me and simon - didn't discuss too much about cancer, instead having a right old laugh about simons job and the douchebags of the New Zealand Music Industry. 2 glasses of wine - I had a sore head this morning as Im a super lightweight these days.
So nice to have some time away without the kids, this never happens! An old friend of mine, Silas from back in the day - his wife Danielle looked after the midgets - we couldn't be thankful enough!
The great news is I can still breastfeed! The boob gods are looking over you Harry x

Friday, 16 December 2011

Letter from The District Health Board - I have an appointment with the Auckland Radiation Oncology Department on wednesday. They move fast so this is super great news! Fingers and toes crossed that they will give me my first dose on wednesday then! Or at least tell me when my Radiation treatment will start.
 Im not sure what the story will be - I have read some people need to go EVERY DAY for weeks on end for treatment. Who knows.... Im kind of stressing about childcare - Max and Harry cant come with me everyday. And breastfeeding - will I have to give that up! People might think its weird I keep going on about breast feeding but me and simon are very PRO the boob, im not keen on Formula at all. Maxwell stayed on till 9months and I was hoping to get harry that far also. Will be devastated if I have to stop.
I am guessing this is where we bring in a family member to help out - we havnt been short of offers either, me and simon are feeling very lucky, lots of family members that are wanting to help out.
I think Simon wants his mum here the most, understandably x

Thursday, 15 December 2011

Feeling flat as a pancake today, Harry woke a million times last night, he's super unsettled from his injections. Toys everywhere and I have a million customer orders to pack. And I just can't be bothered. Simons leaving work early as he thinks I'm close to cracking, but I don't feel like I'm going too. Still no tears, I just feel numbness.
I spent hours on google yesterday reading up on myxiod liposarcoma. Everyone tells me not to google but if they were in my position, how could you not....
I found out a few interesting facts.

* in 2004 statistics show that only 1 case of Myxiod Liposarcoma was diagnosed in new Zealand every year.
* in America most people choose not to go with chemo as a treatment option, and just have radiation plus surgery.
* the likelihood of the cancer returning at some stage is likely, especially in other organs.
* if you don't have medical insurance in the USA your screwed.

I'm feeling quite blessed right now to be living in New Zealand. I can just straight into my doctors and if it's classed as urgent, it will be sorted then and there. I feel sorry for Americans, their health system is a shambles.

Its going to be a quiet weekend, besides Simon doing his radio show, I think I'll reside close to home this weekend. Feeling ever so slightly needy, and that's hugely unlike me.

Wednesday, 14 December 2011

Well here I am, at the beginning of my Journey that is know as the big C - Cancer. I am still processing the fact that I have Cancer, the Label Cancer, Leigh Wakefield - Cancer, Leigh Cancer patient Wakefield. Urgh. People that know me well, would have heard me say the phrase many a time "well it could be worse - you could have cancer'. Shizer, never will those words pass my lips ever again.

Any how, we know now. Its has been a month that this process has started to unravel. But nearly 4 months ago that I started to feel suspicious - that something was not quite correct within me. My mother (who has now returned to Christchurch on a permanent basis after the all the earthquake palava) was staying with us for a few weeks, we were all watching a story on 60 minutes and having dinner, about a Man who was diagnosed with some rare form on Nerve disease, and an overwhelming sensation came over me - I started to cry into my dinner, not really knowing why. I am a sensitive person when it comes to social matters and issues of the heart, but this story made me loose it. I said to my mother and Simon "I think that something might be wrong with me - I just dont know what." The next day Simon made me go to the doctor for a second opinion regarding the swelling on my right thigh...and here I am now.

I have decide to start this Blog to process my thoughts, Something to read when I need some clarity on my situation, Something for family and friends to read if they would like an update as to what is going on. I will at some stage open this blog for the public to read, so anyone else in a similar position to me - can see that they are not alone.

 Im a super busy mother, 2 Boys under 2. Maxwell 20 months and Harry 4 months, I run a small online business and have quite possibly the most amazing man in the world Simon, by my side. Thinking about this mountain im going to climb - will be made all the easier having him help me through. I couldn't ask for a more supportive, positive, and loving sir. At the end of the day the real victims in this saga is Him, Maxwell and Harry. Not me. I am just the shell thats growing this monster. So to break down what has been happening over the last month.

Thursday 24th November

Off to the doctors to see whats up with my leg. Now this is the second time I have seen them regarding my thigh. My doctor Monique, told me 3 months prior after I gave birth to Harry - that its most likely a "Lipoma" and that many many people have them. They are just lumps of soft tissue fat, and are non risk and dont turn into anything nasty.
Since that checkup - this "Lipoma" has grown increasingly in size - no pain and I dont feel unwell. Just the size was freaking me out. Monique was off sick and I was scheduled in to see the Locum Dr Viv Nichols. She said that yes it could indeed be a lipoma - but I should really get an scan done to rule out any nasties. Waiting list? 13 weeks.... Go Private - $250 and you can be seen tomorrow. Simon? "Tomorrow" done. 
Friday Noon I have my Scan done at the radiologists - It was interesting to see what it actually looks like on the screen - after spending most of thursday googling lipomas, it looked exactly like what I expected it to look like - a round flat silicone boob implant. The radiologist gave no sign of any suspicious behavior, only that it "was attached to the muscle". This didn't really put out any alert signs - but looking back it should have. Viv told me she would phone me friday afternoon with some results.
I really wasn't too phased at this point - im too busy with Max and Harry and talking shoe and dress sizes with hormone crazed girls to care. But Viv calls that evening, telling me that the results show its not a Lipoma and I need a MRI Scan. Ohkayyy, thats fine - When do I go get that done? "I have put you at the front of the public waiting list and they are expecting you Monday Morning at North Shore Hospital"  WTF... Now alarm bells are ringing in all directions. Have to see the stupid weekend through first.

Monday 21st November

Off we all go up to North Shore Hospital. Frustratingly we (Simon Max and Harry) all have to go, as Im exclusively breastfeeding Harry and Maxwell has just started walking. As far as I know the MRI scan can take a good hour, so simon has to do daddy daycare. We sit in the waiting room, I get all my vitals checked - and after 4 hours wait we are told its not going to get done today. !!. What a pain. I hate lugging my little ones around, especially to a place where sick people dwell. Not to mention a waste of time for Simon, hes taking time off that he dosent have due to using all his holiday when Harry was born. They reschedule the MRI to Tuesday next week. 8 days concerning wait...

Tuesday 29th November

Back we all go again, MRI done. Sad freaking music in the waiting room. The good thing about all this so far - is that we havnt showed too much worry and stress infront of the boys, no need to get upset if their is nothing to really worry about right? After 1hr of being in that horrible machine, The MRI Doctor asks a few questions, "have you knocked your leg? Any Pain? Do you feel unwell?" No No and No. I walk into the waiting room to a clearly hysterical Harry, a stressed out dad and Maxwell loosing his marbles due to it being dinner time. You gotta love being a parent right? Off for a quick Xray at the doctors request and back home to crash.

Thursday 1st December

Maxwell is ill. Fever and Chronic bum explosions. Off we go to the doctors to see Viv. The good point in all this is I have been so busy with Work and the kids, that I havnt had any time to think about the "Wotifs". Simon dosent like the "wotifs". I try to keep them all on the inside but those that know me well, know that im a worrywort - I really shouldn't give a toss about things that I dont need to.
Max hates the doctors, we sit down and Viv tells me she has my MRI results. She tells me it has come back as a Tumor. They have no idea what it is and I need more testing, but I need to wise up to the fact that there is (and her words) "a 50/50 chance it is Malignant cancer. That is quite possibly the one time in my life that the words just dont come out. Im a talker at the best of times, but no noise came out of my mouth. I listen to her talk about it for a while, and my mind is just simply numb. I better snap out of this as Maxwell is screaming and we need to take a sample of his nappy (joy). As I leave Viv says shes going to call simon and tell him to come home, and that she will be getting the Orthopedic Registrar at North Shore Hospital to contact me.  I drive up to Border Music to collect Simon. Off we go home to ponder life. I get a call from Dr Peter Mutch who is a Orthopedic surgeon at the North Shore Hospital. "You need to come back tomorrow for a CT Scan to check that you have no tumors elsewhere in your body and I have a space on monday to preform a incisional biopsy.

Friday 2nd December

Back we all go to the hospital again. At this point im really confused as to whats going on, its all happening so fast - which is truly worrying. Surely something must be wrong - they keep knocking other patients back to fit me in. But they keep telling me, we dont know what it is... We finally have a sit down with Peter Mutch assistant surgeon. He tells me before my CT scan that they dont know anything, and the biopsy that will being preformed on monday will not just be a needle in the leg. They need to knock me out, cut me open and stitch me up. Possibly staying in overnight. Sorry buddy thats not an option - im breast feeding and this kid dont drink no formula.
We stop at the supermarket on the way home and I spend the weekend pumping breast milk and trying to convince harry to drink formula (which he luckily did as hes such a wee piggy) as a back up just incase im admitted overnight. At this point my Father, Pania (my Stepma), Mother and Sisters, and Simons parents are all informed that somethings wrong. I tell a few close friends of whats up. Everyone is super positive - surely if I am sick - I would feel sick, I have no family history of Cancer and totally healthy. The positives are on my side, but im quietly stressing that my CT scan will show tumors elsewhere. Monday will tell and a long weekend to wait.

Monday 5th December

Off to hospital, we literally walk in the door and are rushed through and prepped immediately for surgery. Im thinking that this is just all a touch dramatic. A Biopsy is just taking a sample of tissue. But im gowned up, nailpolish and jewelry off, issued a pre surgery bed, hooked up to machines and signing forms. Poor Simon has had to leave as soon as we walked in, Maxwell has now grown to hate the hospital and every time (which seems like a daily occurrence right now) we walk in the door he starts to throw a wobbly. One of the surgical nurses tells me they will organize a room for me that gives simon access at all hours to bring in Harry for feeds. Argghh! too much too much, all too much for me - I dont get sick, I dont stay away from my newborn and max, I dont feed my kids horrible FORMULA, and I dont have people telling ME WHATS UP!! 
So I had a little cry, and that was maybe the second little cry I have had at this point. The Surgeon (Dr Peter Mutch) finally shows face, and tells me that my CT scan results were clear and there is no Tumors elsewhere in my body. Im wheeled into theatre and can literally feel myself smiling about this news, as I slip into my coma.
I wake what feels like 2 minutes later (2 hours infact). I had been dreaming about the DHL van showing up with damaged stock and me throwing a huge tizz. Anyhow, my throat feels like crap (due to the breathing thing they put down there)  I have a headache and a massive bandage wrapped around my leg with drains coming out of it and tubes connected to each arm. I have one of those stupid oxygen masks on my face that they replace with a glamorous nasal breathing apparatus. Im whisked off to a ward that I share with 3 old ladies that talk 24/7 about their slipped discs and hip replacements.
FML. Simon comes in to visit, and its feed time for harry. Trying to get him up to the boob while "tubed up" and weezy on the Morphine is a tricky task. Luckily my minds in the right place and all im concerned about is him filling up enough for the night. Max starts to wobble out, and poor simon has to leave again before all hell breaks loose. I can see hes tired (hes also currently unwell with man flu) but I cant walk and theres no way they will let me go home. Meh.

Tuesday 6th December

Crap sleep, I had a nurse in every hour checking my blood pressure as its low and not creeping up. My bodys not hydrated enough and no matter how much fluids they pump through my veins its not getting any better. Maybe this has something to do with breast feeding - so im not really to concerned. I have enough milk to feed a small farm, so who cares. 
The surgeon comes in to do a check up and we talk about the surgery. The tumor is "clear and Jelly like" he says they still have no idea what it is - but they took a large enough chunk for testing, so the results shouldn't be more than a week. Im told that an appointment will be made for me to see the specialist in the next few weeks - and he will be the Dr that eventually removes the whole tumor. He shows me the stitches which is 3 inches long. im told I can go home but to take it easy over the next week, Im on crutches and to take Tramadol for pain.
"Take it easy?" I have 2 freaking babies and a man who needs to go back to work. I have no family here in Auckland and me and Simon always deal with everything on our own, so me resting is just simply not an option. As soon as I get home, I ditch the crutches and just deal with it. We get told that D Day is Wednesday 14th of December, and I have an appointment at the out patient clinic at the Waitakere Hospital with Dr Mutch for my results.

A whole week to wait. Me and simon have our only serious "wotif" conversation that evening. We talk about the possibility of me having cancer, what might happen if it is Malignant and the effects my treatment might have on the family, How we will cope with treatment - kids and jobs. We decide we need to get maxwell into daycare 2 days a week so he can start to separate from me a little and gain some independence. We even talk about, and I hate evening thinking about this, but the possibility of me dying and what simon will do with Max and Harry. But Simon keeps telling me thats its going to be cool and the results will be the all clear. It hasn't spread, its not in my bones, I feel generally healthy and no cancer runs in the family. Its looking Positive.
My week is filled with general mixed emotions. Its not helped by the fact I have a spat with my younger sisters. I have a strange relationship with each of them .I am the eldest out of 4 girls and I have lived a very different life to them. We are all different, and deal with situations in different ways. I am upset by the fact that none of them have called to see how I am. Not one phone call. At any point of this process over the last 4 weeks. My sister Danelle (who I dont have the best relationship with) sends me a email telling me to harden up, that she has dealt with way more in her life and to stop being such a princess. Considering I havnt talked to her all year this really messed me up. All because on facebook (Effing facebook - really...) I thanked My Dad and Pania and Kate and Simons Scotland Family for being such a support to us. I suppose they maybe were embarrassed I didnt include them. But they hadnt shown me any support, hence why I didnt thank them. 
Any how I have bigger fish to fry and Simon tells me I have to let these negative vibes my sisters are sending me go. I really have to channel my energy into Max and Harry. I dont think they have any idea there is a problem. Im feeling quite proud of this :)

Wednesday 14th December

Today we are going to be told if its either Benign or Malignant Cancer. Ive been so busy over the week that I havnt had too much time to spend freaking out - so thats a good thing.
Get to the hospital and just before my appointment I get a phone call from the Cancer hospital. They are making an appointment time to see me next week. Holy Eff. Must be bad news. Simon - "You dont know that, either way it needs to be removed, so stop being stupid" but deep down this was just the cushion before the blow. 
5 Minutes later we are sitting infront of Dr Mutch and he tells us its Malignant and the name of the Cancer is "Myxiod Liposarcoma". We dont really say much. We had actually researched this "Liposarcoma" Cancer as a worst case scenario so we were familiar. He tells me its a rare form of cancer, but I will most likely need a mixture of radiation, chemo and the surgery. He couldn't tell me anything else as hes not the "specialist" but its isolated - for now. Myxiod is just a form of Liposarcoma. It is at the intermediate stage - which means it has the potential to spread to other organs but has not done so yet. But this needs to be sorted ASAP. I get my stitches taken out, new ones put in, bandaged up and off we go. Its takeaways for dinner and a early night in bed to watch Rick Gervais "Lifes too Short" on our new HD Flatscreen. Im one of these people that think too much when I go to bed, so the only way I can get too sleep over the last 4 weeks is via comedy - and only comedy. Anything sad on TV, or any sad music really might be the hair that breaks the camels back. I havnt cried yet. And even now, 1 day later - I still havnt shed any big tears. I guess its coming. 
Simon has just had a phone call from the Cancer Specialist - we have our appointment next thursday in Manakau for 9am. This is goods news as we fly to christchurch on the friday to spend xmas with my Dad and all the Wakefield side of the family. Another week of wait. 
I guess the upside of all this is now we know that yes I do have Cancer - its fixable with the correct treatment. Just what that action plan is exactly - well we will have to wait another week to find out.