mastectomy

Q: When is a tube like a straw?

A: When it breaks the camels back

Drainage tube assessory

Drainage tube accessory

If you want to hear me grumble now is the time. Perhaps I should get Sophie to do the blog from now on so you can hear happy things!

I’ve had 6 months of chemo (so far) and been fine with it, and the mastectomy surgery was a piece of cake. But…. I CAN’T STAND BEING TRAPPED TO THESE STUPID DRAINAGE TUBES! Grumble grumble grumble.

For 10 days now I’ve had freaky tubes coming out of my waist (literally) which drain ‘fluid’ from my underarm and from where my left breast was. The surgeons sew them into your body to stay in place, their job being to keep body fluid flowing out of the area/s to avoid swelling, infection and from dislodging the expander. They are doing their job, so the longer they are in the better, if there is still fluid to drain. Apparently the fluid needs to get down to 30ml per drain in 24 hours for them to be removed. They were still at 120ml (per tube) yesterday. Most people take this lying down happily. I’m trying… I really am.

You might wonder why this is getting to me. I’m a tough old cookie and I can take pain pretty well but I hate being trapped.

For one thing, the nurse comes every day to drain it. Don’t get me wrong, the nurses are lovely and do a wonderful job but I have no idea when they are coming. So I can’t plan anything (at all) on any day. I have to be at home from morning to night until they come. For example, on the MOTH’s birthday we were going to go out for lunch and to the movies but we ended up waiting until 3pm for the nurse.  I can’t even go for a walk! Boo hoo. It’s a pity party.
Screenshot 21:09:2014 10:45 amSecondly, the tubes are just plain annoying.

  • They hurt both at the site from where they exit the body and at the site they are draining from. My armpit is very swollen so it hurts to put my arm down
  • They tangle about me when I’m trying to sleep. I can only sleep on my back or my ‘non preferred side’. It’s like being trapped in a spider web.
  • They catch on things and I yank at them by accident. My best trick is to hook them up to the shower tap and then forget to unhook them before I get out. EW!!
  • They are cumbersome. I hide them in the glam bag (see photo above), but I need to wear a coat over the top or you can see the tubes. This looks kinda odd.
  • Yesterday they started leaking from the wound and I had to call a nurse to come and patch it all up. 2 nurse visits in one day!

That’s enough grizzling for today. Now that I’ve depressed you all with my complaining…

Gratitude

aspendale 3aI had a wonderful day with my sisters yesterday doing arty crafty things. They came to ‘The Wood Hood’  (arriving at the same time as the nurse) and plonked on the kitchen table for 4-5 hours. We ate lunch amongst our mess and chatted non-stop, as you can only imagine 4 sisters can do. The MOTH flew the coup very quickly and came home just in time for my ‘leaking wound’ experience and the arrival of the second nurse for the day.

I’m so grateful to have such wonderful baby sisters who make me laugh and inspire me so much. I always wanted a brother but seriously, would he want to sit and do craft or art while eating diet food and barely leaving a silence in the conversation for 5 hours straight? Could anyone ramble mindlessly like us and understand what is going on? No. I doubt it.

Medical info

I have appointments with the plastic surgeon and breast clinic this week but on the 30th of Sep I discover my plight with the chemo and radiotherapy. I don’t have any preferences. If I don’t have any more treatment it could leave the cancer cells ‘untreated’. If I do… well of course, that’s no fun. With my type of breast cancer it’s important to make sure all cells have been killed off. So even though I’ve had a mastectomy, there are potential cells lingering either in the blood, or on site. I’ll be guided by the experts so prayer and smart doctors are the order of the week. As the breast nurse said to Col this week ‘We’re not out of the woods yet’. Given our name I don’t think it was a pun.

I’m so glad I’ve had the 6 months chemo to shrink the tumour and to stop the spread into other parts of the body. Otherwise I’d be sitting here like a time bomb waiting for the surgery to heal. Well… perhaps that’s a bit dramatic but it does feel like it sometimes.

In December I have a bone scan and a PET scan to check if there is any cancer into other body parts. The doctors don’t believe it is so, but it’s a good ‘peace of mind’. How wonderful to live in times where these tests are available. It takes the guess work out of things.

In the meantime… I’ll macrame my drainage tubes and do a happy dance when they are gone. The small things make me happy! They also make me grumble.

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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!

 

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?