Here Goes
Hello. My name is Jenny and I live on the NSW/Vic Border. I have gone to post in here a couple of times but backed out. Denial maybe? On Wednesday I was officially given the diagnosis of BC. I have had a large lump for around a year but I have 26JJ sized breasts and the lump is down along where the bra wire sits. I put it down to thickening because of the bra wire. I recently started Lite N Easy and after loosing around 10kg I noticed that the lump was much larger than I thought. It has its own postcode ;p Its 5cm x 3cm x 2cm. So I did the mammo and ultrasound and knew when I called for results, that the urgency by my GP to get me in to see her, that something was very wrong. That day I had bloods, CT scan and was booked in for biopsy. All along I was doing as much research as possible. Armed with knowledge I have always found it easier to deal with things. Must be part of the anxiety I have day in and out. I met my surgeon on Wednesday who gave me the diagnosis. I was alone at the appointment and was in shock, none the less. I guess I was hoping it was just a mass that they just wanted to remove for safety sake. I do remember asking him what type of Cancer and I vaguely remember him saying Metastatic and that its very common. I am booked in for a lumpectomy and node removal on the 22nd. (Tuesday Week). I am then too do 5 weeks radiation. I've got all of that in my head and ready to deal with. But now I am reading all of the paraphernalia and Metastatic means I have it in other places in my body? Do they know where? Does this mean I will probably have to do chemo after radiation? I know I am overthinking all of this and should take it one day at a time. I work 3 days a week and also on partial DSP. Being at work keeps my mind off things. I am planning on taking vacation leave for the rest of the week after my lumpectomy. I am so grateful that my oldest of 2 (daughter) is able to travel up from Melbourne to bring me home from the surgery and stay with me for a couple of days. Another questions. I had been using implannon rod to control my periods, over the years. The last one was put in around 2011 and is still in my arm somewhere. As I have very thick arms I cant feel it and haven't bothered about it. I believe that it has run out of the hormones anyway after all of this time. Is this something I should tell my surgeon about? I have so many questions. When will I start radiation? Will someone contact me or do I contact them? I met my Breast Care Nurse but she was heading on vacation to France the next day. I have the number of another one and I will phone her and make contact with her this week. It's like my whole life is about the Cancer now. I am being strong in front of everyone else but these times at home alone I am terrified. Sorry if this is all over the shop but that is how my head works. I have been treated and continue to be treated for Depression an Anxiety for close to 20 years and have only recently found a good balance. The Lite N Easy journey was me actually caring about myself. Some days I shake so much it looks like I am having a min seizure. Usually I am upbeat and cheeky and able to find the lighter sign of things. But tonight I am low. Any insights would be wonderful.
Where did my gratitude go? I swear I left it right here somewhere...
can anyone relate to that feeling of getting through a bloody battle of all the treatment, the horror, the fight, and then that awesome feeling of sheer happy gratitude after it’s over? and you wanted to grab everyone and hug them and swore you’d never let a single second go by without being thrilled to be alive and not sick? and you were going to live an amazing productive love filled life embracing everything because you knew how fragile life can be? yeah. I’ve lost that. I’m depressed and wondering where the F_@&! did all of my pure gratitude and excitement go? I’m so angry at myself for being like this after fighting so hard to make it through. Has as anyone else found they just don’t have that spirit of gladness in everyday life anymore, that cancer stripped away your spark and you’ll never get it back and care about anything ever again?
Questions to ask 'Post Surgery' of yourself - to your Specialists - Tick Sheets - Self assessment
I know that after my own surgery, I didn't always quite know what questions to ask of my surgeon and 'the team' that we all see regularly for the first 5 years following our treatment - so I set about looking for 'tick sheets' that would help me, as these appointments approached! I came across some really interesting files. They are all 'multi paged' so I've put a 'sample page' from each document to give you an idea of what is in it. The first booklet is available at most Cancer Clinics and was put out by the Cancer Council - 'Living Well After Cancer'. It is a good one to give to friends & relatives to read as well - to give them an idea of the longterm affects of cancer even after successful treatment - as they often think that once you've had your surgery, chemo, rads & tabs - that you are now 'well'. We all know that that is NOT necessarily the case! :( It really is a lifetime sentence. This booklet covers a lot of areas that concern us all - and may be able to help answer questions in many situations that we face. (sample page) The 2nd one is: "Questions to ask 'post cancer' " - a 'tick sheet' - these questions could be spread across the whole team - your surgeon, Onc and Rad Onc as well as GP. Tick the ones that are relevant to you in the lead up to your individual appointments. (sample page) The next is "Self Care Specific Symptoms" - this sheet could also be for any of your team - with the 2nd section relating more to mental health issues that may impact you. (sample sheet) And finally - a Survivorship Care Plan - virtually a ''Self Assessment Yearly Checkup'' sheet .... which has more specific symptoms that you may be concerned about and also has pages for noting yearly checkups required re Dexa, Mammograms, Colonoscopy, MRI etc - almost a 'diary' to keep re future appointments. (sample Pages) Write down the dates you've had them, and when the next one is. Add any other exams that are not already there You can use any or all of these documents to track how you feel you are progressing - date them & further down the track, you can compare them to see how you are travelling. Take care & I hope these sheets help in tracking your health - both mental and physical. xxx
Recovery Emotions
After a good couple of weeks I had a bad day yesterday. On what should have been a good one. One bad thing happened, I cried, and the rest of the day was cactus. I was starting the very first session of the ExMed Cancer exercise programme. I parked, walked fast (running a couple of minutes late) the 20m to the ticket machine, got the ticket and headed back to the car. I saw a man and a woman standing next to my car, gesturing at it, talking and taking pictures of it. My first thought was don't tell me someone's backed into it in the minute my back had been turned. So when I got there, the woman walking away by now, I politely asked the man "what's going on with my car?" I won't go into the whole conversation but it turns out he was a parking inspector, which was impossible to tell unless you were really close to him and took time to look at the tiny logo on his non-descript zip up hoodie/jumper thing. He was smug, aggressive, didn't identify himself until I asked him who he was. He was unhelpful, bordering on rude and smirked as I put the ticket on my dashboard. Loathesome. Then I had to wait ages to get into the gym as they haven't organised passes yet, and when I got upstairs the meet n greet had finished, I didn't know where to put my stuff (cos you need a pass to use the lockers) and I couldn't see the exercise physiologist. When he did see me and come over, he asked how I was and I burst into tears. This reaction is completely unlike me! Normally an encounter like that would get my dander up and I'd be lodging formal complaints! Today I feel a tad better but absurdly brittle. Why are my emotions so close to the surface now?? I feel like the slightest thing will have me weeping and beating a hasty retreat to my cave. I've travelled the world on my own ffs! I've given birth with no drugs, stood up to bullies and talk to strangers without blinking an eye. Will this ever go away or is this the new me? I don't like it, I don't like it at all. I know I feel more vulnerable now, and I'm trying to embrace that and allow it to bring more empathy and softness to how I interact with the world, but I really need my skin to be a bit thicker...
Your day in three songs.
Hi beautiful people. I am a huge music fan and have found it so very important in helping to get through the last year. I have used it as a distraction to send me somewhere else when I have had to do something not so nice or when I was scared. I've used it to help the tears flow or not to. I use it to change my moods. My day is a good one so here's my playlist for today. Your Song Elton John (for no particular reason than it was playing in my head when I woke up) Get Rhythm Johnny Cash Three little birds Bob Marley I would love to hear yours.
Final Countdown 3 days to go for Mastectomy and Diep Flap reconstruction....YIKES!!!!!!
Hello My Fellow Courageous Beautiful Friends!!!! Well a few weeks ago I wasn't traveling very well, as we know too well that emotional roller coaster! I have since had an appointment with a Psychologist I saw 3 yrs ago and it was invaluable. It helped incredibly to try and put it all into perspective. She pointed out that our logical thinking comes from the frontal lobe but unfortunately my emotional body hasnt caught up to the logic of whats happening eventhough I know it has to happen because it makes sense. The other thing she pointed out is the attachment I have to my physicality and all my bits and pieces, of course am human this is what we are...but this is not the essence of who I am..I am so much more than that and the irony is when people see me they dont see my physicality they see the depths of the person I am. Somehow separating myself a little in that way has helped with letting go. The other thing was she said I was grieving, grieving the loss of my breast, grieving the struggle the past 6 years all very valid and is important. I feel I turned a corner. I finished work yesterday and the reality hit as I drove home in tears even at my age wishing my MUM was here to wipe them away...OH DEAR LOL So honestly?? I am incredibly nervous!!! and yeah scared of the whole thing, the pain of it, recovery...the end result...but am calm and trying to do one day at a time...just get to Monday and get to surgery thats all!!!! PHEW!!!
2 year all-clear, 2 year all-fear.
I've just had my second year check-up scans. It's always going to be so stressful. I've had a range of worrying new symptoms pop up over the last couple of months while on my Tamoxifen break, so I'm worried something was there and has now domino down my left arm lymph nodes. Taking a look at my scans, my layman eyes don't see a disaster. There are areas in the ultra that look like masses although to my memory they don't seem to have the blood flow activity to indicate tumors, however on the mammogram they radiate the margins of my crash site (... that's what I call my scar tissue, haha). And as much as I'd like to think hey, it's just age, it's just calcification, there's nothing like it in my other breast to establish that. I know, I know, the cardinal rule of check-up scans is not to look at them before your consultation but as if have scans of inside my body in my possession and not look? Ha! I never shook the lethargy. My doctor told me that it's actually a normal thing for cancer survivors to be chronically tired. There are no solutions; work while tired, exercise while tired, eat while tired, struggle to sleep, wake up tired, repeat. And everything always hurts. It's just my normal now to need painkillers to get through the day. 2 years on and my radiotherapy pain still hasn't gone away - and it's not just that it's not gone away, it hasn't "settled" the way I was hoping. It might be that during healing I just got lucky and clumps of nerves got together to make particular movements painful. I hurt every day and I needed to complain about it. It's been so long of waking up with pain and no energy and I don't complain anywhere. Sorry BCNA. You get my worst side. I've refrained from posting quite a lot and just kept to the activity threads because I feel that my particular forum needs are a form of clutter for those in active treatment. A follow-up/aftercare category/life after category would be nice?CHEK2... my genetic plot thickens?
Today I went to have genetic testing for the CHEK2 gene mutation. Simply put the CHEK2 gene regulates cell division. If it's mutated the cells go on dividing and, well, cancer. It's also linked to increased risk of prostate, kidney, colon, thyroid, lung, some brain cancers and osteosarcoma. With breast, it's indicative of an increased risk in the moderate range if no first or second degree relative has it, if both have, as in my case, it's an increase in risk of 44%. Well aren't I glad I've had a bilateral mastectomy... And interestingly it has a direct correlation on the effectiveness of some of the breast cancer chemotherapy drugs. If I do have the CHEK2 mutation, I had the right chemo. I checked. Can you imagine how I'd feel if the chemo I'd had was the wrong one?? Holy f**k... So my remaining sister is trying to decide what to do with her breasts. As the only woman in two generations not to have breast cancer, this is of course a major consideration. She found her way to a private clinic and had a genomic test and didn't have the CHEK2 mutation. My mother had the same test and did have it. It's quite a rare mutation. My deceased sister didn't do this test, so I'm the last piece in this jigsaw puzzle. If I do have it, my sister is somewhat more in the clear than if I didn't. The genetic counsellor today said that he'd be very surprised if I didn't have it. He's also fairly convinced that my deceased sister had it based on some previous health issues. It's a spit test. I had to fill a vial with saliva, and now it will wing its way to San Francisco. Faster and cheaper than doing it at Peter Mac (sad). I'll find out in early November. The geneticist said that it would have combined with other unknown genetic factors to cause my BC, something that accords with Peter Mac's assessment of a polygenic cause earlier this year. If I do have it I'm uninsurable (for life insurance), but that ship has sailed anyway. As my kids reach adulthood they'll have to think very carefully about how to proceed. Along with the CHEK2 test, he's testing a large number of other genes (61 in total). I thought about it when he asked me if I wanted to do the full panel. In the end I decided that if I'm in for a penny I may as well be in for the pound. If I can catch some other health drama early and/or head it off at the pass, I'd like to. Knowledge is power etc. If I do have it, well I suppose I'll have to have a good chat with my oncologist about how to screen, or not, what precautions I have to take etc. I don't suppose it'd qualify me for a subsidised MRI. That'd be too much to hope for... This (of course...) has been very stressful. It's probably contributed to my high anxiety week. As I was finishing the ExMed workout today my sister rang to change a complicated arrangement, it got mildly contentious and she hung up on me. Which I hate and, of course, burst into tears. FFS I'm a 52yo woman! Not some angst ridden teenager with pmt! I just can't cope with the slightest derailment at the moment. I simply don't recognise myself. I'm embarrassed writing it here yet again. I won't anymore. Just presume I'm weeping on a regular basis... And now I'm consoling my still wet eyed self with a café lunch and there's a revolting couple refusing to control their toddlers who are literally screaming, running around and banging on the windows. When my kids were that age if they behaved like that they were packed into the pram and taken home. I only had to do it once with each kid. They never did it again because I don't do empty threats. Hurrumph. I am grumpy as f**k.
