Author: Jenny Wood

Self employed eLearning consultant studying Bachelor of Illustration at NMIT. Life is on hold while I battle with breast cancer.

Skin check app warning

Yes I know… using a smart phone app to check a mole on your skin sounds like a stupid thing to do but…

A: I’ve been battling breast cancer and it’s hard to focus on the little things when you’re batting a ‘big’ (pardon the pun) thing. So many little medical issues become insignificant and getting MORE tests is so exasperating.

B: My GP recommended I do this as it is a ‘really good way to track them yourself’.

Skincheck apps have become very popular for checking moles etc for malignancy. I have very olive skin but even so I have a lot of moles and have had a lot removed. The MOTH was told by a mole checker recently that he had ‘too many’ to check and yet he is a prime candidate having been burnt so many times as a youth with his fair skin.

When I asked my GP about this mole 12 months ago he said it looked ok and to check it with this app. I was undergoing breast cancer treatment at the time so he was hesitant to put me through more and in hindsight it DID look ok at the time. It looked NOTHING like the melanoma my Dad had so I must admit I wasn’t too concerned. Dad’s was very small and jet black. Mine was like a small Sultana bran flake… but not as yummy.

So when I checked the mole on my arm using the app recently it was classified as ‘low risk’. I checked it twice but only saved one of the photos. Well that gave me peace of mind for a while anyhow. Let’s get this breast reconstruction surgery out of the way.

While waiting to go into surgery to have my breast reconstruction, an enthusiastic student plastic surgeon saw it on my arm and said ‘I don’t like the look of that’. THANK YOU to her diligence because otherwise I would still be floating around with it on my arm.

I received an apology from the company and have told them that I was wanting to warn them and give them feedback so that they can tweak their app. I am sure they have peoples health in their best interest but even so… WARNING WILL ROBINSON don’t rely on them!

Now I have had a failed breast screen check and a failed melanoma check. How cool am I? I just keep bouncing back and ducking and weaving. I’m living life fearlessly in faith with a sprinkle of caution.

Here is their response…

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The circus they call ‘home’

Here I am mostly intact. We have moved in with Sophie and Jarrod in Glen Waverley and our dogs only fight every 3.5 seconds now so things are improving. It’s like a circus here but we don’t have to buy tickets so that makes it kind of cool.

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We have successfully settled our sold house and our purchased house at Safety Beach is ready to be demolished. We are hoping to have a little holiday in it before that happens but that depends…

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I hesitate to tell you what’s going on medically because I don’t want my breast cancer followers to lose hope for breast reconstruction. However, here is the long and short of it…

diep flap

New flat belly complete with belly button repositioning. Sutures keep going around the corner!

Here I am with a stomach wound which looks like someone took to my waist with a can opener, various scars from the tape (everywhere), bruising from various injections and lines, a right breast which has had a reduction and looking pretty fine, a left breast which is ‘mostly’ fine BUT part of the DIEP flap reconstruction has lost circulation and ‘died’. So I have a black hole the size of two 50c pieces on the inner part of my left ‘breast’. It is a big bad angry looking mamma. No photos provided. I don’t want to scare you.

10155433_10153574376714506_2489141779332434782_nOh… not to mention a 7cm scar on my arm from the incidental melanoma. 

What now? They decided that this section of the flap is definitely ‘dead’ on Monday so I need to go back into surgery to have ‘something’ done about it. The melanoma also needs to have more taken from it so they will do both at once. The surgeon will decide when and what tomorrow morning (Wednesday 23rd March 2016).

I’m off all pain killers now so I should be heading onward and upward… if only I didn’t have to go back in and get it done again. I appreciate  your prayers and concerns. Soon this will be over and we can just stop and watch the dog circus while sipping camomile tea and wondering where on Earth all those things we packed into storage for 12 months are. My car will be released from it’s holding bay where The MOTH put it so I can’t drive. Meanie. 

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News update from the hospital ward. 

Thanks everyone for your kind support. 11 hours in the operating theatre wacked me a bit but now the vomiting is over and 4 out of 5 drainage tubes are gone I’m on a roll! I even managed to pick up a toilet roll from the floor, walk around the ward and independently shower myself today.

Unfortunately the breast flap transplant is ‘dubious’ in one section so I may need to go back to surgery and have it ‘tidied up’ either tomorrow or Tuesday. The right breast reduction is looking healthy but old lefty isn’t happy. 

Also (sigh) the mole they took off my arm as a side line, was a melanoma so they are going back in for more. It’s my right arm 😳 but it’s ‘just a flesh wound’ to quote the great Monty Python LOL.

Oh and did I tell you that the day before I went into surgery the nurse from my medical clinic called to say I had Rheumatoid arthritis markers in my blood? It’s going to be double checked at a more convenient time. If I were a horse… 

It’s pouring!

You won’t believe it, or maybe you will. My reconstruction surgery is booked in for the 9th of March and we are MOVING house on the 18th. That’s one way to make me run in circles. I feel like I’ve been doing that for 2 years now. Enough is enough. Does anyone want to throw any more fun at me???

I am still dreadfully drowsy but I’m trying different strategies to overcome it. Packing boxes flat out all day means I don’t go to bed until 10pm. That’s one method. The other is diet but I won’t bore you with that. Because the CT scan showed nothing, the bone scan showed something in the skull and I still have symptoms, they have moved my reconstruction to an earlier date. That way they can remove the metal in the tissue expander so I can have an MRI. They plan to cut up my stomach and make a breast from it and reduce my ‘good breast’ and lift it to match the new one. Cripes. I will be like a 15 year old… give or take a wrinkle or 3. New stomach and 2 new girls!

No driving, lifting etc for 6-8 weeks afterwards. Eek. That’s going to be interesting. Could everybody come over so I can boss them about?

Just to explain, we are moving in with Sophie and Jarrod while our house is being built. We have already taken most of our ‘stuff’ over to Glen Waverley so the process is happening. Sophie only moved out 6 months ago. So much for empty nesters! At the same time, we are finalising the new house being built at Safety beach. I’m so excited about that I’m beside myself.

I promise with my whole heart, that as soon as I can I am going to catch up with people for a farewell coffee or dinner. It may not be until May but it will happen… just NOT NOW.

My wonderful friends are coming to clean the house when I get out of  hospital so that it is ready for settlement day. It was all a plot to get them to do my cleaning and it worked ha ha.

My brain is empty

Don’t you love your oncologist when she tells you you have nothing in your brain? Already The MOTH has used that phrase 4 times in 12 hours. 

No news is good news!! So the CT scan showed nothing and I can go back to choosing tiles for the new house. Colin said he will cancel the graveyard plot he was buying. It doesn’t mean it IS nothing unfortunately but it’s a nice breathing space for me/us.

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My daughter Sophie and The MOTH came into the appointment with me and quizzed my oncologist. So the plan now is to have my case discussed on Thursday with the ‘team’ and they will decide if I need to have further tests to figure out what the abnormal Bone scan results are about. If I don’t hear from her we will meet up in 3 months and have a tumour marker blood test. If I have other symptoms I have to report back to base earlier.

When we left the room the staff at the breast clinic gave me hugs and kisses. They are such a gorgeous and caring bunch of people. It’s stupid to say I will miss them because I can’t wait to never see them again ha ha.

It’s difficult to shrug the memory of my Mum, who died when she was 54 from a brain tumour, 3 months after getting a CT scan that was clear. But I refuse to have that hanging over me. I’m back to planning and scheming and living life. I don’t plan to spend life on tender hooks waiting for the worst. Especially with all the aches and pains you get at this age but I DO have to get them checked out which is pretty annoying. It seems like there is always a question mark hanging over me (other than… Where am I going to live when we move out of our house which has sold?).

I plan to live my life to the fullest. So don’t ever wonder why I cram so much in… it’s because life has so many opportunities and we never know what’s around the corner do we?

It’s not a tragedy to die… it’s a tragedy to have a life and not live it. 

Thanks for your prayers and concern as always. I’m here to annoy you for a long while yet YAY!

A little clarification

My apologies for yesterdays blog post. It’s a little garbled and in my usual black humoured way, I’ve focussed on it being funny instead of informative. That’s meant many people are very confused and I’m attempting to sort out your confusion! I know you all think activity is normal for my head but apparently it’s not!

If you subscribe to my blog by email, you only get the first version so any edits I do later on are missed. It might be worth you reading this via the blog so that if I alter it you will get the ‘better version’.  https://dishmoptop.com/

A BONE scan is a scan they use in oncology to look for cancer in the bone. They inject a ‘tracer’ into your veins which highlights any cancer activity in the bone. I’ve had 5 of these in the past 18 months now so they are also able to compare previous scans.

In this recent scan they discovered ‘activity’ in the skull. By ‘activity’ they mean that this area has been highlighted by the scan and there is an ‘uptake’ by the tracer. In my case it’s across the front of the skull towards the top of the BONE… not the BRAIN.

Normally they would then compare it to the CT scan to see if there is damage to the bone or surrounding areas. The only place the full body CT scan I had doesn’t examine is the head! Typical. So I am having my head scanned on the 28th and will get the results on Jan 4th.

She would prefer to do an MRI scan which will tell us more but I have this (stupid) tissue expander in my breast which has a metal port in it. She said she might push for me to have my reconstruction soon so that they can take it out. Sigh. I feel like just ripping it out but that would be gory.

If the CT scan is clear, at the very least I will need to revert to more frequent appointments with the oncologist so they can keep an eye on me. My situation will be discussed at the Maroondah specialist forum next week where they talk about ‘difficult cases’.

So when asked what it means, the oncologist smiled sympathetically and said ‘we don’t know’. That’s not a good answer. I hate the unknown more than the known… even if it’s bad.

So basically… on Jan 4th I’ll find out if the news is BAD or I’ll find out nothing… which means they have to do more tests and wait and see. So there is no actual ‘good news’. Just another QUESTION MARK. Yeesh. I have so many ???s going on right now.

I do have other symptoms going on but I have attributed them to the fatigue, and that may still be the case. I have ‘eye floaties’, inability to concentrate etc. I have always read 1-2 books a week but I am not able to concentrate on even a page. This may well be due to the sleepiness. I’m not TIRED or EXHAUSTED… just sleepy!

As you know, once cancer leaves the breast area it’s considered untreatable so this is something I would like to be free of! So please keep your prayers up I really appreciate them. I read and love all of your comments and well wishes so don’t think I don’t. I have plenty to occupy myself right now so that will distract me nicely and thank God the oncologist has pushed my appointments early!

Update on tests

Firstly, let me wish you all a very happy and safe Christmas. We at the Wood Hood are very excited to announce that we have bought a block (with an old house on it) which we will be building on in 2016. It’s 400m from the beach and about the same distance in the opposite direction from a golf course. Sigh. That is like a dream come true.

Now I have a garbled update on my health for you…

The mystery of the fatigue continues and because the GP had saturated all of his dance card of tests, he sent me back to my oncologist. The difference with general tiredness and fatigue is that I feel like I have jetlag 24/7. I sleep 2 to 3 hours in the afternoon and then get a solid night sleep of 8-9 hours at night as well. I wake up feeling sleepy in the morning. I don’t lack energy as such but I can’t concentrate or organise things like I usually can because I’m in that sleepy fog!

The oncologist ordered blood tests, full body CT scan and a bone scan, which I had last Thursday. More radiation in my veins has given me the warm glow I’ve come to know and love.

Today I got the result (if you can call it that!).

The tumour marker tests were clear, the CT scan is clear but the bone scan is showing activity in the skull bone.  The oncologist said we don’t know what it means (!). She will put my name forward to be discussed (again) at the ‘forum’ of specialists at Maroondah hospital.

The CT scan didn’t include the skull so they can’t see what’s going on which means I have to have a CT scan on the skull to check if the bone activity from the bone scan is cancer. They wanted me to have an MRI but I can’t have one because I have metal in my breast. She may push my reconstruction forward so that I can have the MRI.

So the upshot is that they still don’t know what’s going on but no news is good news. I am blessed in knowing nothing and believing that all is well.

I’m going to have to wait until the new year for more tests. 4 months of this and it’s really no further forward. I know now that my heart, kidneys, lungs and everywhere from the neck down is all ship shape. My brain is questionable but you already knew that.

It seems that I might just be sleeping beauty 🙂

Update on fatigue

This is a quick update to let you know my test results…

My tests were all clear (yay!) My heart is functioning at 98% of the normal range. (yay) My upper abdominal innards are all excitingly healthy (liver, pancreas, gallbladder, kidneys etc) and my lung is pumping oxygen like a little trouper. Now we have the ‘well what is going on then?’ question. So I see the oncologist on the 23rd Nov and she will do tumour marker tests to see if there are signs of tumour growth (blood test) but I’m sure there is nothing sneaky going on. That’s my final word over my body.

If that’s all clear I’ll try looking at diet etc but I mainly eat Paleo so it’s not like my diet is BAD. It may be that I have a sensitivity. I don’t know. I’m grasping at straws. Sleeping 12 out of 24 hours is just plain annoying.

My GP said my fatigue is too chronic for it to be something minor like ‘over doing it’ or ‘diet’, given that he has checked thyroid, iron etc.

… back to getting the house ready for ‘open for inspection’ today. Stay tuned and thanks for your lovely comments I’m sure it’s all sounding quite boring by now and I’m blessed to have such lovely people sticking around to hear my sagas!

 

The medical maniac is back

People have been asking me why my blog updates have disappeared. To be honest… it’s because I’ve been in ‘limbo land’. Have you ever been in that position where you know things ‘aren’t right’ but you haven’t got a diagnosis and you don’t want to seem paranoid or like a hypochondriac? No? Well apparently that’s just me ha ha.

Screenshot 1:11:2015 9:06 amI’ve had increasing fatigue for the past 2 months which has now got me asleep for 12 out of 24 hours. I’m also breathless and giddy at times. I KNOW… I over do it and I have the house on the market and so forth but guess what? I’ve always over done it and I’ve never lacked energy in my life. Right now my fatigue is worse than when I was on chemo. 3 months ago I was walking 40+ km a day in the heat all over Europe!

So I have dragged my reluctant self to the GP and he has done a series of blood tests. Then he heard ‘something in my lungs’ so I had a chest X-ray which is clear (YAY!). However… my liver function isn’t so good and my ECG wasn’t good either.

In the past I’ve had excellent heart test results so you might think that strange but I was told that because of my breast cancer being on the left side, the radiotherapy can damage the heart. So that’s a possibility but who knows.

Next week I have a liver CT scan and a heart stress test. Sigh. I’m sure you all know the feeling… part of me wants to find out what it is out of a need to know what’s going on but also I don’t want to seem a fraud. How silly! The other part wants it to be NOTHING. If it’s nothing why am I so sleepy and giddy? Maybe it’s love. The MOTH is pretty cute;)

I feel embarrassed to be such a medical maniac so I’ve only told my closest friends and family because they can face palm and roll their eyes at me and I can just tell them to ‘get over their bad selves’.

So… if you were wondering where my blog had gone… it went into the land of question marks. Nothing to report but hopefully I’ll know something by the end of next week. Otherwise, back to the oncologist to get more tests. Boo

On a happy note… my hair is like a giant curly frizz ball. At least I have hair and if I can con my hairdresser into straightening it I look quite ‘normal’. PLUS… I am waiting to have my breast reconstruction done. They will build me a new one out of my stomach and ‘fix’ the other one to match. I’ll be frolicking on the beach in my bikini in no time.

Oh and I can’t miss a chance to show you our house on the market. We have worked so hard to get it looking presentable. I’ve set my art room up as an ‘open studio’ and got commission jobs from yesterdays open for inspection. Ha ha. I’m a marketing queen.  http://www.realestate.com.au/property-house-vic-warranwood-121100646

Bad hair days

I know, I know… I should just be grateful that I have LIFE… and HAIR… but oh dear. This photo is the progression from short fuzz to afro curls and then the hair straightening catastrophe which resulted in it standing on end. Straightening it took my daughter forever and nothing we did would make it settle back down. Even mousse.  So I went back to the curls very quickly by washing it out. I can only laugh. So far I’ve been told I look like a Granny and a baby lamb. I can’t believe how many people rub my hair to see what it feels like. I don’t blame them because I do it myself.

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Medical news

It’s only 4 weeks until we go to Europe for 8 weeks. I’m getting very excited about it but also apprehensive given that I have a torn tendon in my left hip. It keeps me awake most of the night with the pain but seems fine during the day. Maybe I’ll party 24/7! I am doing as much ‘Body balance’ classes and running as possible as the doctor said weak muscles cause it in the first place and it will help. Next weekend I’m running the Mothers day classic. I ran it last year without stopping and ran it in a good time WHEN I WAS ON CHEMO!! Now… well I don’t think I’ll manage to run the whole 4k as I lost fitness during surgery and radiotherapy. I can manage 2-3km on the treadmill but that’s a lot different to running on the track.

As for my RIGHT hip which has the strange ‘spot’ on it… I told the oncologist that I am going to Europe regardless of what the test says so she suggested I have the test when I return. Ignorance is bliss. So I said ‘Good idea’! I really don’t think it’s anything to worry about as it’s not getting any worse. I suspect it’s just an old war wound.

I’ll post you our itinerary once we get it all organised. I know… we’ve left it awfully late to organise but we weren’t sure if it was even going to happen. Now we are starting to panic. Whee!! I can’t wait.

I’ll return to Aus in time to have reconstructive surgery and we are also putting our house on the market. We just like to add more complexities into an already chaotic world!