breast

The Argentinian balloon expander

tissue_expander_unfilled_tcm8-329403Last week I attended many days of appointments but the most memorable one was the appointment with the plastic surgeon to have my tissue expander inflated by 100ml of saline.

My doctor transformed from a lovely man with a quiet demeanour, to a giant Argentinian with a grim expression… armed with a silicone gun sized syringe. He came charging towards me, closely resembling a maniac. I was frozen to the bed but in my head I was running up the corridor screaming. Colin was on the other side of the curtain being amused by my comments. I don’t remember what my amusing comments were or I would share them.

Unlike the image I have attached for your information, it was a syringe with just a needle in it. It is inserted into a port at the top of the ‘breast’ through the pectoral muscle wall and skin. It didn’t hurt at all but the horror of the advancing doctor was enough to give me nightmares for 3 nights.

Guess what? He is coming back 4-5 more times with that thing. Eek! The fluid in the expander gives me a ‘crushing’ sensation, but this only lasts a day or so.

Amongst other appointments last week, I had a CT scan and a bone scan (which took all of Friday!). This is to check the spread of cancer to other places. I’m praying for that to be clear because that definitely isn’t a good thing, since it’s incurable once it leaves the breast. The results of that will be given to me on Tuesday (tomorrow) and on Wednesday I have more Dolly Parton fluid injected by the Argentinian maniac and then I have chemo straight after.

Whoo! More poison for me. I can’t wait. *Said with a tad of sarcasm*.

9 months of chemo is a hoot. Not.

10707927_10152443593484506_400476837_nNow that the drainage tubes have been removed, I have a handy European socket in my side ready for plugging in those shavers, hair dryers and lamps. Sorry if you’re squirmish but it is pretty creative don’t you think?

The armpit and side infection is improving now that Ive had my 3rd lot of antibiotics and tomorrow I go to have more liquid put into my skin expander… or balloon if you prefer. Apparently they push the fluid in through a port which sits just under the skin, until I can’t take the pain any more. The way my pain threshold is I’ll end up like Dolly Parton.

Treatment plan

Yesterday I had an appointment with my oncologist and the radiology specialist. The oncologist advised us that because my tumour didn’t respond well to chemo and because it grew and another tumour developed, it is possible that cells are still floating about in my body or have planted themselves somewhere. So it was decided that I would have another 4 rounds of a different type of chemo. This type has also been trialled with my type of breast cancer. 9 months of chemo in total by the end of the year is a marathon and it feels like it but it’s better to get it over with and know that I’ve done all I can.

The radiologist also recommended that the type of cancer I have would benefit from 5 weeks of radiotherapy to prevent it from re-establishing itself into the chest wall. She was very thorough and informative and filled me with great confidence. I was expecting radiotherapy all along so this came as no surprise.

Yes… we have a plan but I have to admit I felt quite overwhelmed with the thought of it. I was enjoying the break and starting to feel like my old self. The MOTH keeps saying ‘I have my wife back!’. I’m giving him cheek so I think that’s what he meant. My hair is just starting to grow, my eyelashes are 3 mm long. I ate INDIAN FOOD without burning my stomach out. I’m dusting myself down right now and adjusting my sails towards the finish line again. I had an offload to my little sister yesterday. She is always so compassionate and yet very practical and it was just what I needed. She has enough troubles of her own and just needed her big sister blubbering on the phone LOL.

Chemo starts next Wednesday the 8th of October and radiotherapy will begin once chemo finishes. This chemo has the side effects similar to the first type I was on… give or take a few extras. There is high risk of nerve damage to my hands and feet, especially since I’ve already had 4 cycles of Paclitaxol. HOWEVER… I didn’t get any last time and I am not planning to this time!!! Boo to that!

My fitness isn’t so good now that I’ve been recuperating from surgery but I am going to try to boost it up a little now and keep my energy up as this has helped me immensely to overcome fatigue in the past. I’m not allowed to do any exercise until next Wednesday… which is when chemo starts. Erm.

We had planned a holiday to QLD so we have strategically booked my chemo appointments around it. My oncologist told me I can just bust the doors of the hospital down up there if need be. Let’s hope not. I can just see me on the beach with my Dolly Parton breast and my vomit bag. Nice.

I know this sounds all bad and gloomy but I can tell you now. If I had been healed instantly I would have missed out on the wonderful journey I’ve had along the way. Amongst everything, I’ve been married to Colin for almost 35 years and we have become so much closer during this journey. He is my buddy and my best friend. We have talked and talked about how this experience has enhanced our marriage and our love for each other. It’s a beautiful thing to be stripped of everything in life which doesn’t matter to be left with what does.

My sister told me today that it’s like the process of making essential oil. They use perfume and take everything away from it that isn’t necessary until all they have is the raw basic oil. This is the rich part which has the ‘essential’ and real ingredience. If I had been healed instantly this journey wouldn’t have existed. I’m so grateful to have had an experience which sorts out my life and shows me the priorities.

Arty news

Screenshot 1:10:14 7:41 AMAs I’ve said before… with all bad things comes good. I have had amazing opportunities with my artwork. I can’t keep up with orders! I’ve been approached by a children’s book publisher to illustrate a book, I’ve got my artist in residence job at Luther College and I have been selected to exhibit in the Maroondah Art Trail. TheMaroondah Art Trail allocated the Urbanlife cafe in Ringwood and Col and I popped over on Friday and hung 14 pieces of work on the walls where they will remain for 4 months (unless sold of course).

Pop in and visit if you get a chance!

 

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It’s just a flesh wound

My guest blogger seems to have upstaged me so I’m taking over again! Thanks Sophie for your lovely contribution I love you heaps.

Today is ‘verdict day’ so it’s an odd day to update the blog but it’s a good time to share my past week and clear my mind in doing so.

T10636229_10152421456294506_7077982170405306639_nhis beast of a cancer is determined to make a fashion model out of me. Now that I am hairless, one breasted and having to carry two drainage tubes around in a floral bag the picture is perfect.  I had a few additions in hospital such as the long white socks and the bandage over the cannula. Apparently it’s all for the good.

If I could be so vain as to say my best attributes have gone, I would say it but perhaps it’s that my vices have been stripped from me and that can be a good thing. It forces me to live life for the right reasons. Besides, who needs a breast when it’s trying to kill you? Who needs hair when you have to keep washing it and cutting it. Apparently it will grow back. I already have stumpy little eye lashes and eyebrows growing.

images-1The surgery wasn’t so bad. I took panadol and off I went, showering myself the morning after surgery and feeling pretty good overall. My underarm is giving me the most grief as it has a strange crater in it. I seem to have a lot of weird sensations, including pain, under there but I guess it will subside.  I also have numbness, intermittent coldness and a feeling that a mouse is running up the inside of my arm. Maybe I should remove the cheese from my armpit (mouse… cheese… never mind).

I’m so pleased that I kept up my exercise as I am still feeling so very fit and have very little fatigue. I can’t do any for 4 weeks now so that’s disappointing but at least I have a good starting point.

They put 100 ml of saline into the expander, which isn’t anything to write home about but in 2 weeks time they will add more and keep doing that until I am ‘balanced’.  Sorry… no photos. I draw the line there and I’m sure you’re pleased about that. Sophie couldn’t wait to see the war zone but not everyone has her warped curiosity.

I had a huge room of my own in the hospital for 5 nights and the nurses were calling me the queen. Given that my arm exercises include a ‘Queen like wave’ I showed them just how right they were. Although they were all lovely and I was very well treated (apart from the food!!!) I am very happy to be at home. There’s no place like home.

I would have been home after 2 days but the drainage from the wounds was (and still is) flowing a little too much. Hopefully the drainage tubes will come out soon as I am not fond of dragging them around with me. Yesterday was my dear MOTH’s birthday and after waiting all day for the district nurse to arrive we went to the movies and out to dinner. I had my drainage tubes in a bag under my coat, my wig and makeup back on and off we went. A tiring but fun day to celebrate  his birthday and the ignorance which could be called bliss. Today is ‘verdict day’.

 Verdict day

The surgeons and doctors had a forum to discuss my ‘special case’ yesterday. They have told me on a regular basis that I am ‘unusual’. Given that the 1st tumour shrunk with the first chemo (Paclitaxol ) but the 2nd tumour grew on it. If, in fact, it WAS a tumour. Both tumours grew on the 2nd chemo (AC). I’ve no idea when the lymph glands became malignant or how many (yet). I don’t know if there is any spread or if I need more chemo and radiotherapy. Surely 6 months of chemo is enough but if it’s necessary I’ll be guided by them. I’ve no idea how they will decide which type of chemo to give me.

So today is the day the doctors will decide how to continue with treatment, given the limited options of Triple Negative Breast cancer and this will be discussed with Colin and I this afternoon. I don’t know if I should hope for chemo and radiotherapy or not. Part of me just wants to get on with my life and the other part says ‘give me what I need to get rid of this thing’. I have faith in the surgeons, although mine is away this week so I will see a registrar.

Watch this space…

Last but not least

A big thank you to everyone for your prayers, well wishes, cards, flowers etc. We both feel really blessed to have such wonderful friends and family surrounding us with love and support. I know I haven’t personally thanked people for the cards etc but I really have appreciated your sentiments. It boosts me no end. I personally want to give a big hug to the MOTH and my 3 kids for being such troupers. Shan has been in NY but has been phoning and messaging me daily. I can’t wait to see him!

 

Chirping quietly

Screenshot 6:09:2014 6:11 pm

I’m back on my perch and chirping. I have to admit though I’m almost ready to fall in a heap. It helped a lot that the plastic surgeon gave me clear answers yesterday and I have fixed appointment times. I’ve had so many changes to the surgery situation because it is so rushed, that my head is spinning. Plus… my week is like this…

Friday: am Luther College pm Drove to the Austin hospital with Sophie to speak to plastic surgeon

Friday night: Dinner with friends and an over night stay at Heritage estate

Saturday: Breakfast at Heritage estate, drove to Frankston and back with Sophie, ran laps around the athletics track

Saturday night: Out for tea

Sunday: Surprise event for Colin with the whole family starting with an early morning (TBA)

Sunday night: Movies with my friend

Monday am: Pre-admissions appointment at Maroondah hospital.  pm: Breast nurse appt

Tuesday: AM Breast clinic  PMLymphoscintigraphy at Maroondah hospital (to check the location of lymph glands)

Wednesday 7am: Maroondah ready for surgery

 

So as you can see… there is no time to have a meltdown and I’ll just have to remain on my perch chirping:)

 

Surgery news

Sophie came with me to speak to the plastic surgeon who spent an hour with us. Sophie took notes which was very helpful and was a great emotional support as well.

Apart from the surgeon telling me I HAVE A BEAUTIFUL TUMMY (and proud) he also told me I didn’t have enough of it to create a breast. Boo to pilates!!!

The appointment was for an hour and so I won’t bore you with the gory details. I’m sure you’ve all heard enough of my breasts over the past 6 months. Here is the rundown, using Sophie’s notes.

  • It’s best to do a reconstruction with your own tissue – because your body will move and grow with you. Doesn’t have the same problems as implants. If you put on weight so do the breasts.
  • May be difficult because I don’t have much ’tissue’ (I’VE ALREADY HAD LOTS OF DONATION OFFERS THANKS!!!!)
  • He will put in tissue expander (purple balloon) to keep space open. This gives a better result in the end as the skin is ready for implant etc.
  • Tissue expander concerns – radiotherapy burns skin, can deform the breast and around the tissue expander which can cause infection.
  • He believes mastectomy is a good idea given my little lump factory situation and the fact chemo isn’t working and I can’t use other treatment options (hormones or Herceptin).
  • Tissue expander, goes in flat under the muscle and then they put more and more saline into the tissue expander port via a needle through the breast every 2-3 weeks (nice to know it’s not helium)
  • During the 3-5 months I will find more about the treatment options.
  • During radiotherapy they may need to deflate the tissue expander (remove the saline).
  • Reconstruction is not a good idea given that my cancer future is unknown. Once I’m clear of cancer it can be done. I need to grow a tummy in the meantime ha ha.
  • Plastic surgeon is at the end of the pecking order. Most important to save life and rid body of cancer.
  • Reconstruction date is dependent on further cancer treatment.

Sorry if it’s a bit of a ramble but I’m about to go out so I haven’t edited it very well. If it makes no sense just be assured I am in good hands and feeling happily overwhelmed!

Sophie will update the blog while I’m in hospital:) Now is her chance to publicly humiliate me ha ha.

A tough decision… but who needs breasts?

556963777To follow on from last weeks post… I have more news but it’s still filled with ‘ifs and maybes’. That uncertainty which I know and hate.

To help with uncertainty I’ve made a decision for myself. After a long hard think about it and discussions with the family… I’ve decided to have a mastectomy (left breast) next Wednesday regardless of the ‘new lump’ cancer status. That was a pretty hard decision to make but once I made it I felt relieved. Who wants to live the rest of their life with lumpy boobs and potential tumours that grow with the speed of light? I’ve had up to 15 cysts in each breast from the age of 17 which makes self-lump detection impossible. The breast screen didn’t pick up the tumour last October and it grew rapidly over 3 months to golf ball size. How could I ever relax?

The ‘new’ lump is growing dramatically and feels very much like the ‘old’ one. Hard, irregular, immobile and sore. The old tumour is also growing. There is a race going on and I feel like a lump factory! The surgeon is pretty certain that the new lump is malignant and she would be doing a mastectomy anyhow if that’s the case.

Here are the bullet points again:

  • I will have a full reconstruction during the surgery providing the tumours aren’t bigger than 5cm and haven’t spread into the chest wall. If this is the case, I will need radiotherapy and they will put a balloon (!) in there to hold the space and the reconstruction will be done after treatment finishes. Colin said he is going to chase me around with a pin.
  • I probably won’t have my current chemo again but may need to go back on the old one (TBC)
  • I may need all of the lymph nodes removed because they look ‘suspicious’ but they will test them while I’m under anaesthetic and decide then
  • Surgery is next Wednesday the 10th of Sep but I have no notification yet so I don’t know times. I’m not even really certain which hospital I will be in
  • I need to see a plastic surgeon but I have no notification yet so I don’t know times (!)
  • It’s all being done in such a rush the doctors are in a spin. They had a meeting yesterday to discuss my situation which they said is very complex. Well yeah… I am not a simple person. Even my breasts are complicated ha ha.
  • I don’t have to have the core biopsies tomorrow. YAY!!!!!! I have a very busy weekend so I can party on.

I feel peaceful and happy with my decision. Many of my friends have offered to donate their breasts as they feel they are too well endowed. I have such generous friends. I wonder what they would do if I said ‘yes please’ with a serious face. I may take all donations and make a collage out of them. Ew!!

I don’t know how they will do the reconstruction but I’ll find out soon. I hope they collect bits of fat from hips, thighs and buttocks. The balloon sounds interesting but I’m worried about what colour it is. You know how important that is to me.

Arty news

Luther College artist in residence project. 'Noahs ark'

Luther College artist in residence project. ‘Noahs ark’

Last week I was approached by a book publisher to illustrate a children’s book. I’ve now signed the contract so that means I’d better do it!!

I’ve got my Artist in Residence position at Luther College with my artwork to complete, classes to teach and I have several commissioned jobs waiting to be done.

Like so often in life, a door closed and another one has opened. I think I’m officially an artist. Wow that sounds weird. I don’t even think my art is good but I enjoy doing it and others seem to like it. I have sold more than 60 pieces of artwork since March this year along with products and prints. I have to pinch myself sometimes. I’m loving the expression and creativity it releases in me without the need for concentration or stress. It’s just as well because concentration really isn’t happening in this little brain lately. At least I have a break from chemo and will be able to construct a sentence without the need for charades when I can’t find the words.

I’ve been sharing my story with the kids at Luther College and how getting cancer has opened a whole new world for me and that with bad things there is always good if you look for them. To prove it, I’ve told them how I can draw my eyebrows on differently every day and wear different wigs. They give me that ‘gee you’re a weird person’ look that teenagers do.

I’ve had so many opportunities and wonderful experiences as a result of spending time on my art that I can only see it as a blessing. I am SO not returning to my previous work. I now declare that my geek days are over:)

If I get more details about my surgery I’ll post them before next week, especially if I find out the balloon colour as I know you’re all dying to know.

Purple would be nice yes?

Falling down with the roller coaster

Things have just taken a bit of a dive bomb this week unfortunately. This is a quick update to fill you in. I’m sorry to those I didn’t contact personally yesterday. As you can imagine, it’s difficult to be on the phone (especially when you have a hearing impairment like me!!!) making individual calls. Just be assured that it’s not that it’s not my preference. I have hundreds of relatives (literally) and that’s without friends. I LOVE YOU ALL xxxx So I hope you’re OK with reading my update here. If not… well… erm… too bad to sad? I’m harsh but you know it’s my humour.

cK5Ap

Last week when I went to have chemo and saw the oncologist she could feel and measure the breast lump. This seemed a little odd given that it hadn’t been ‘felt’ for 2 months by either of us. If it wasn’t for the ultrasound we could have decided it had disappeared.

Over the course of the next week it became sore like it used to be and by Tuesday this week I could grasp it in two fingers. To add to it, I can feel two more sore lumps nearby. So I phoned the clinic expecting the usual ‘it’s just normal don’t worry’. They made an appointment to see the surgeon for the next day (yesterday). I taught year 10 at Luther College as part of my Artist in Residence role in the morning which distracted me very nicely!

The surgeon felt the lump and very quickly said ‘yes it’s growing back’. She thinks one of the other lumps is a cyst but is a bit dubious about the other. I don’t have all the answers… because I forgot to ask the questions but hopefully I can fill in the gaps over the next few days. Here is what I know right now (for those who like bullet points ha ha).

  • The tumour isn’t responding to the current chemo and because it’s a very aggressive cancer type it is growing back as rapidly as it shrunk
  • I MAY stop the chemo (oh please!!!) but I don’t know for sure until the surgeon speaks to my oncologist
  • I will have a biopsy on the 4th of Sept of the other two lumps
  • If the other 2 lumps have cancer cells I will need to have a mastectomy
  • I am booked in for a lumpectomy on the 10th of Sep and if the biopsy is positive they will do a mastectomy instead (with full breast reconstruction at the same time)
  • I will find out if it’s a lumpectomy or a mastectomy on the 8th when the biopsy results are analysed and my doctors have had a meeting about it
  • I will have all lymph nodes removed because some are swollen (need to query this today when I phone them)
  • I need to see a plastic surgeon about the reconstruction at some point but I can’t imagine how that will fit in between the 8th and the 10th
  • I don’t know what this means for the clinical trial. Perhaps I’ll be kicked off it. Not the first time I’ve been kicked out of something.

So that’s about as much as I can tell you right now except that I’m feeling OK and not daunted at all. I’m always happy when there is action. It’s when I get patted on the head and told not to worry that I worry.

In reflection

You may feel (like many do) that perhaps I should have had it removed in the first place. This is a total fallacy, especially for my type of breast cancer (triple negative breast cancer) and given that it is so aggressive. Remembering that I had a CLEAR breast scan in October 2013 and 3 months later I had a golf ball sized cancer growth. If I had had it removed prior to chemo, I would have had chemo delayed for a couple of months while I recovered. In the meantime, any floating cancer cells in my system could have established themselves in my body. Once that happens it is incurable (with breast cancer, secondary cancer can’t be cured). AINT NOBODY GOT TIME FOR DAT!!!! Chemo killed all those little suckers and now I’m just left with the tumour to deal with.

But now… let’s get that sucker outta there!!!

I’ll update you when I get the next saga of news so watch this space. As always I appreciate your prayers and interest very much.

 

A funny thing happened on the way to a party

Jen2For some weird reason, my hair all fell out and then began growing back again. For a while I shaved it off but then I left it. It’s white and soft like baby hair and now about 2cm long. It’s very sparse so you can still see my scalp very easily but even so… it’s hair. The even weirder thing is that everywhere else my hair has gone and isn’t growing back. I haven’t shaved my legs for months. Yay for that. I’ve alway done things differently to everyone else ha ha.

I usually spend 3.5 seconds doing my makeup but my personal assistant (daughter) has kindly made it her duty to prepare me for the public eye when it comes to special events.

In this case it was an engagement party. As you can see (above), she did a pretty good job of the eyebrows, although according to her (and me) one eye brow is just plain odd. It’s quite challenging even for her to get it right. Today Sophie glued fake eyelashes on me even though I’m not supposed to wear them due to the particularly frail state my skin is in from the chemo. Then came the wig. Voila!

So off I went to the party, trying desperately not to blink furiously and/or to wipe my eyebrows or eyeliner off while navigating the way in the car for the MOTH. My wig was in my eye so I flicked it furiously out of the way so I could see the GPS instructions. Oops. I soon discovered that my eye lashes were glued to my wig. Now I had one corner of the eyelash hanging off and no idea how to fix it.

A quick SMS to Sophie resolved it. It all seems so simple when she says it like that…

Screenshot 26:07:2014 8:11 pm-3

 

 

I’ve been microchipped

Last week we stayed at Rosebud for a break and for 2 of the days I had an art retreat by myself. On the Tuesday, however, we had to drive back to Maroondah so I could have a titanium chip put into the tumour (providing they could find it). After much hoo ha with the ultrasound, they found the tumour and eventually put the chip into the middle of it. Now when they do surgery, they will be able to find the area to remove.

I can’t run away now because they have a remote control to bring me back to base. Just kidding.

If you want to read about the tagging there is a short article here: http://www.auntminnie.com/index.aspx?sec=ser&sub=def&pag=dis&ItemID=101026

The radiographer also found two swollen lymph nodes under the arm and in the breast. I’ll find out more on Tuesday when I start the new chemo treatment and see the doctor. Hopefully I’ll discover the size of the tumour (which is too small to be ‘felt’) and what’s going on with the lymph nodes. Hopefully the nodes are just another weird thing to add to my list.

I’ve been feeling pretty good this last week. Running on the treadmill at the Rosebud resort and with running group today and not needing nanna naps for the past 5 days.  I created so much artwork in Rosebud I almost couldn’t find my way to the bed at night for the mess. Loving it!

Swinburne investigation

My lovely friend Elaine is pioneering an investigation into the number of women from Swinburne who have or who have had breast cancer… possibly any cancer at all. It isn’t a witch hunt, but an investigation to see if there are links. Elaine has medical background and has made contact with the right people, composed documents and permission forms etc. So if anyone out there would like information please let me know. Elaine is doing this out of the goodness of her heart and I just want to thank her on behalf of all of us who are too distracted to do it ourselves. Bless her cotton socks!

Just call me Dream Boat.

Screenshot 16:07:2014 5:06 pmLet’s begin with ‘how I am’ because my friends and relatives always check my blog for ‘medical details’ so here tis…

I’m grateful to be having a 3 week break between chemo drugs. I finished the 4 months of Paclitaxel and on July 29th I begin the AC chemo. The Paclitaxel drug has 2 pages of ‘possible side effects’ which mostly I’ve escaped unscathed. I’m  more tired than usual but my blood counts are all normal and I have no numbness or tingling in arms or legs which is common on this drug.

So goodbye to Paclitaxel and hello to AC.

The name AC comes from the initials of the drugs used:

In comparison, AC only has half a page of ‘possible side effects’ but they are more likely to bump the blood counts down. So it’s more likely to compromise my immunity and energy levels and give me nausea. I have my fingers in my ears saying ‘la la la’ to that. Praying for it to fly by effortlessly and to keep my energy and sharp wit going!

I’m still running 5km 3 times a week and trying to do ‘Body Balance’ twice weekly but I have had a very nasty stabbing pain in my upper abdomen for 4 days of this week (and a bit the previous weekend too). I’ve been off my food and not sleeping well because of it. I see my GP tomorrow about it as it’s most likely tied up with the drugs I take for my arthritis. Ho hum. Nanna naps are becoming a little common now but most of the time I don’t actually sleep. I just rest for 30 minutes or so.

10555161_10152298070909506_2005442233_nI saw the surgeon at the breast clinic today and she is booking me in to get the breast lump (if they can find it!!!!) ‘tagged’ next week. A bit annoying given that we have been asking them about it for 3 months now. The tumour can no longer be felt, so in a way I hope there is something found in the ultrasound so that when they do surgery that don’t have to guess where it was. If they find something they will ‘tag’ it so that they can remove the area during surgery. Surgey will be in October sometime.

You can read more about tumour tagging here.

Perhaps they are really microchipping me so I can’t run away from surgery. They know how fast I can run:) Anyhow… that is going to rudely interrupt my ‘Arty’ week away where I was going to eat apples and paint pictures in my pjs next week.  Luckily we can drive back for the surgery and return to Rosebud the same day and it won’t interfere too much!

Here’s a little story from todays visit to the doctors.  The MALE surgeon said to me ‘We need to pop up on the bed so we can look at your breast’. I almost got the giggles but stopped myself. WE???? Really. That would be kind of odd. So glad he didn’t pop up on the bed with me as it’s only 50cm wide.

Dream boat

Here is the truth about my sharp wit. My brain is so scarily foggy that I spend my time worrying I’ve forgotten things. I’ve always had a ridiculously good memory. This week I forgot a lunch date with a friend. ARGHH! If you have any dates with me please remind me the day before. It’s not that I don’t love you dearly, it’s just that I’m so lacking in grey matter right now. That’s why I can’t work. I don’t even remember what my job used to be let alone how to do it ha ha. Just call me Dream Boat.

Gratitude amongst the hard times

I’m grateful for many things.

  • The bonding of relationships with my husband, my family and my friends
  • My artistic gifting
  • The strengthening of my faith
  • My dog
  • Wigs
  • Eyebrow pencils
  • Bed
  • Humour
  • Bra stuffing (for the future)

Most of all I’m grateful for having the following story to share with you.

As you know, a friend named Josie died from Breast Cancer a week ago. Her husband, Kevin, popped in to pick up some artwork from me and stopped for a coffee. Kevin watched his wife struggle for 13 years with secondary breast cancer and shared with us many stories (mostly funny ones). This one really got me thinking though…

13 years ago, Kevin was seriously stressed about his job. He had both medical and emotional conditions which were stress related. He worried continually and had difficulty sleeping etc. When Josie was diagnosed with cancer the stress stopped instantly. He said that almost overnight it completely went away as he focused on what was important to him and prioritised his life. He spent the next 13 years enjoying his marriage and focussing on each other. They focussed on the things in life and what really mattered.

Imagine if we all lived our lives that way. If relationships were the most important things in life and not money. Why do we need these nasty reality checks to know what is important? Divorce rates, work related stress, estranged families and suicides would all decrease. People would take better care of their health. If we stopped prioritising the material things.

Simplistic I know, but it did get me thinking and thinking is pretty hard for me right now so that’s a miracle!

 

 

Good thanks!

10347187_10152183012219506_1541027296625629266_nWhen people ask me how I am I say ‘good thanks’. That’s the standard Aussie response but what I mean by ‘good’ is… ‘all things considered… I’m good’. If I wasn’t on chemo and was asked the same question maybe I’d say ‘not so good’. I don’t usually launch into details because there are people around me suffering far more from various illnesses. Besides, I am feeling good emotionally and that’s a significant thing. In 2 months time I change chemo drugs to ‘AC’ and this could reduce my blood count dramatically. I will have 12 weeks of it, so I’m preparing my body to be fit and healthy by eating right and exercising regularly! At present, my blood count is still normal and the tumour has shrunk to the size and width of a long grain of rice so thank God for that!

Here is my pity party list for those who want to know what ‘good’ means…

  • I can’t sleep due to insomnia and night sweats which are every 30 minutes. This is due to ‘THE PAUSE’ not the chemo, now that I’m off HRT. 3 months ago I slept like a log. Here I am now, writing this blog post at 4am. Boo!

 

  • My brain is really struggling with ‘chemo fog’ as well as ‘THE PAUSE’ causing brain malfunction. It exhausts me to make every day decisions. Cooking tea is a major drain on the grey matter. I’m so glad I’ve made my life uncomplicated! Being self employed means no sick leave and my job requires lots of brain power because eLearning projects have strict deadlines and can be very complex. The threat of litigation looms over my head if projects are not completed to an agreed standard. So work is out of the question. Boo!

 

  • My sinuses are picking up allergies and causing problems due to the thinning of the skin (everywhere) and the hairless nostrils. Bleeding and congestion issues have been mostly resolved by putting vitamin E inside the nostrils each night. I know that’s TMI but some of my readers have cancer and details can be helpful!

 

  • Although I have no nausea, my food tastes weird. I have to ask people if my cooking is funky because it sure tastes that way.

So overall, that’s not too bad is it? As I say… I’m good!

 Balancing acts

10377159_789271297763330_542149322412441886_nLife is fairly self indulgent right now. I have ‘rest time’ blocked in most days so that I don’t over do it. I am not putting my hand up for things which I know will create stress. What? Not doing 1000 things at once? No study, art, work and play? Usually that’s what I thrive on. SometimesI feel listless without the challenge factor, but mostly I’m happy in my little foggy world. I’m so glad I have my art and it’s been selling quite well so that helps pay for materials. My social calendar keeps me pretty busy and I don’t have to use my brain too much for that:)

I’m managing to keep myself healthy and to maintain my fitness level. On Sunday I’m off to run the MS 5k fun run with my dear friend who has had MS for 21 years.

I’m not being a hero, I am a fighter by nature. I am also contrary, independent and stubborn, which is the flip side of being a fighter. The MOTH will verify this without thinking about it for more than 3.5 seconds.  I know that all cancer patients deal with their illness differently, there are 100s of different chemotherapy drugs which have various side effects and also different types of cancer and different types of breast cancer as well. I would hate to think people felt inadequate or compared themselves to my story. My story is my own and I recognize that we all tick differently and our bodys respond differently. My first response to anything is to fight. Not necessarily the right response!

To begin with, I was already physically fit (for a 53yo female) and ate a healthy diet. I don’t drink alcohol very often and I don’t smoke. I also boosted myself up with supplements prior to beginning chemo. So my starting point was high therefore I’ve managed to maintain good health up to now. If my starting point was low, no doubt I would be struggling a bit more than I am. I’ve found it important to know my limits and listen to my body!

Loving my 3 sisters

The sisters

Last weekend I escaped to Sorrento with my 3 sisters for our first time away together ever. It was an amazing weekend and I loved having time to just chat, laugh, soak in the hot springs, eat and shop with them.   Getting there was a challenge. Firstly one sister had an abscess which resulted in surgery to have a molar removed the day before we went away. With a mouth full of stitches and in pain, she soldiered on!  One of my other sisters had a chest cold but wasn’t infectious. As well as that, I broke a molar off on the Wednesday and had it filled the day after, which is a bit of a big deal when you’re on chemo. Hooray for them and the tough genes! It was a miracle we made it but it was definitely worth it.

Embracing the bald

Day 1 of my bald badness

Day 1 of my bald badness

I’m taking a photo a day of  my lovely bald head in different hats, wigs and so forth, of which I seem to have in abundance. Many of them are costumes I’ve scavenged from around the house. I might make a fast paced movie at some stage. Why? Because I want people to know that losing your ‘vices’ isn’t so bad. Hair loss is a fear a lot of women have and I was not looking forward it at all but it can be quite liberating or even amusing. Sometimes it can be just plain weird.

Day 2 embracing the bald

Life in the fog

ThJenny Wood artat’s 3 times in two days I’ve been asked ‘where is your blog post?’. Oops I’ve been very slack. So here are some news flashes.

Too much information?

2 weeks ago, I said to the MOTH, see if you can find the tumour. I swear it’s not big enough to feel anymore.

MOTH: “I can feel something there”

Me: “That’s my rib. There’s one just like it on the other side”.

I know that’s too much information but try not to visualise the scenario and you’ll be fine. The point is… IT’S SHRINKING!

It’s such a risk doing a clinical trial. Having chemo first and surgery 2nd means I didn’t ‘get that thing outa there’ which is the first impulse. This Tuesday will be the last of cycle two. As you know, I have 3 weekly infusions of chemo and a one week break so after this week it’s break time woo hoo! Apparently my blood count is still normal so hooray for the ridiculous amount of supplements I’m taking. They are a meal all in themselves. All I need to do is pour milk on them and eat them for breakfast.

Life in the fog

Somehow I’m still running around the athletics track (9 times non-stop last week), going to gym and pilates as well as socialising to the maximum. I have had 3 weeks without a free day and most nights out as well. I know it’s too much but I take little naps during the day so don’t start growling at me y’all.

I am not getting much sleep for the first time in my life with the HRT being brutally taken away (BOO!) and the cortisone which comes with the chemo. I suddenly fell into fog land on Thursday. My brain went to mush and now I am having to write lists for basic things such as… sending a card, phoning people etc. Yeesh. I’ve gone from ‘Mrs Organised’ to ‘Mrs Mush’. Soon I’ll need a note to remind me the dogs name.

Here lies the biggest problem. The MOTH, who has never worn a watch, doesn’t have a mobile phone and has never kept a diary, has always relied on me to do the organising. ‘Where are we going tonight?’, ‘Who with?’, ‘What time?’.

What will happen to us?

I’m afraid.

Baldness trivia

Do you know, that when you have very little hair and it’s about 1mm long, it sticks to your pillow like velcro? When I try to roll over I wrench my neck and it ends up sore the next morning. I know it’s odd but if you haven’t worked it out yet… I’m odd.

 Mothers day classic run

Tonight I’m going out for dinner and then getting up at 5am to run the Mothers day classic. Our team has raised over $2000 and almost 3 including individual amounts. I thank you all from my heart for the donations. The clinical trial I am currently on wouldn’t exist without donations such as yours. If you see me on the TV, I’ll be the one with the spotty bald head running through a cloud of fog. Our team fundraiser link