How to prioritise self care?
So self care is the mantra in survivorship right? I need to do gym three times a week for the weight bearing exercises to stave off the bone damage of Letrozole. Haven't managed to work that into my schedule since early last December. On the days when I'm not at the gym I have to walk because minimum of 30 mins a day exercise, preferably an hour. I have to bust stress, of which I have an excess. So I'm starting a yoga class on Saturday morning. Can't use food and booze to stress bust anymore. I have to sort out my head, get rid of the depression, manage the anxiety, so it's a psychologist appointment every two or three weeks. She wants me to journal. I struggle to find the time. She also wants me to spend 30 minutes a day doing something I enjoy, just for me. I saw my dietician today about my failure to knuckle down and lose weight. My willpower is rubbish and as you know, it's like rolling a boulder up a hill trying to lose weight in menopause on an AI. Have to eat a low sat fat diet because of the Letrozole cholesterol issues. I have to cook most days of the week for a vegetarian, three meat-eating teenagers and a Type 2 diabetes octogenarian. There's also the assorted ongoing medical appointments that seem to roll around with remarkable frequency. This afternoon on my way home from the dietician in Town, I received a phone call from my son saying my daughter was vomiting, a lot. She was already home with extreme tiredness and what she described as stress from the overwhelming amount of schoolwork she has (Yr 10). Of course it could be just that, or glandular fever, but my mind goes straight to cancer. Lymphoma probably... I also get an email from school about my nephew (Yr 8) He's got yet another detention after being given several warnings to rein in his classroom behaviour. The teacher is "beginning to wonder if he has impulse control issues". My son, starting uni next week, has done nothing whatsoever about learning to drive or getting a job and has zero money. How does he think he is going to pay for his day to day uni life? He's been sitting in his room playing computer games and watching anime since November. From the beginning of January I've made him cook dinner once a week. My niece continues to be the most difficult of them all. Almost continually rude, refuses simple requests, sulky, terrible sleep issues & much more. So to properly deal with each one of those issues takes buckets of time and buckets of money. GP appointments, specialist child psychologists and who knows what else. About to take vomiting daughter to the doctor now. My self care, if done properly, would take buckets of time and buckets of money. There are no buckets here. If there's a choice I have to prioritise the kids. Any prioritising of myself is already accompanied by massive guilt. I am really struggling to arrange my survivorship life. And that's even before I start trying to find and then hopefully get a job. How does everyone do this? How do I recover fully and lead a healthier, engaged life in survivorship, and take care of everyone else, have a satisfying relationship with my partner, a job, maintain contact with my friends, keep fit, lose weight, not be stressed and feel OKish about everything? Is it actually possible to do at all? Yours from the House of Bad Behaviour and Vomit, K
The New Me.
I was so looking forward to a works Christmas Party this weekend to catch up with people I hadn't seen for a quite a while as well as friends who have been there for me since the beginning of this shitty BC journey. I got the old glad rags on ready for a fun night but once having got there I just felt I didn't belong. Like some sort of out of body experience when you are there but not there?? It was lovely to see people but I couldn't muster up one ounce of fun or enjoyment for the evening when everyone else was so obviously enjoying themselves. With the realisation all I wanted to do was go home I left early with plenty of tears driving home thinking what the hell is wrong with me. I know in my heart it will get better, I guess it was just one of those moments when you want your old life back and some sense of normality.
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?Letrozole - Year 2
I'm six weeks into my second year of Letrozole. The good news is my hands have remained better since I took a one month break after six months. They still hurt, both bone and joint pain, especially with the cold weather, but they've never returned to the earlier level of pain. My ankles have bone ache 24/7. This pain is now spreading up my calves. It's also spreading into my wrists forearms. My elbows remain sore and the inside soft tissue very tender. I've given acupuncture a red hot go. It seemed to help my hands initially but not so much now. It gives me pain relief for my ankles while I'm there, but none when I'm gone. It's had no effect on the hot flushes. All in all I think I'm going to pull the pin on it shortly. It's expensive and I don't think the results justify the cost. So I've moved on to try osteopathy. Many of you here have raved about it, and I've joined your ranks! It just makes my body feel better. The effect lasts for a few days, it's cheaper than acupuncture, and I get some money back from the health insurance. I've accepted that the five to ten years on Letrozole are going to be painful. There's no getting away from it, so now it's about doing what I can to help me cope. For example, the best thing about acupuncture is the heat lamp. It really soothes my ankles, so I'm going to save up and get myself one. The mental health aspect remains challenging. I discussed it with my oncologist. Cancer or menopause or Letrozole or a combination of some or all? So she has asked me to take a two month break, keeping a side effects diary for two months before, and during the break. That way we'll know what is the Letrozole and therefore if we can tweak the AI in some way. I'm going to do that in the summer so I can really enjoy the break. My oncologist was very sympathetic. She said it's often difficult managing the estrogen drop in women like me, who haven't gone through menopause before BC and then go onto an AI. She had some interesting thoughts about estrogen sensitivity. That in her experience the women who develop ER+ BC are very estrogen sensitive and therefore have a hard time on AIs. She said AIs had been tested on women with ER- BC and they don't suffer the side effects anywhere near as much to zero. She said I'm in the 10% risk range so there's no doubt about it, I have to be on it. I'd very much like not to be the woman who cries on the phone when she's talking to her dietician (who she's met face to face six times) and finds out that said dietician is leaving forever to live in London (a romance)... However it seems as if that's who I am now. Hopefully a 'side effect' that stops when I stop taking the little brown pills. Ridiculous! Oh and my oncologist also confirmed that the joint pain is arthralgia, and won't turn into arthritis when I've finished taking Letrozole. This was one of the questions that I put to the webinar doctors that wasn't answered. There was more but I of course can't remember. My right toe joint is very very sore tonight me so I'm going to take a pain killer and go to bed and try to sleep. BS tomorrow for my next check up. Nothing to worry about but I can't help but feel a bit nervous. I think the worst bit is the flashbacks to diagnosis and all the bad news I received in that office. Nothing for it though, has to be done.The Funny Things
I thought we should have a thread about things that are so absurd about survivorship they shoot right beyond being depressing and just make us laugh, and of course for the things that are just FUNNY. It might be something legitimately hilarious, maybe something upsetting that you've started laughing at for one reason or other, an experience related to survivorship that you just think was funny in an awkward or revealing way, whatever your take is. xo
The wheels fell off my rollercoaster.
It’s been a while since I’ve had a bout of the blues but the last week sure sorted that out. The worst one since a month after starting Tamoxifen round 1. I’ve been coasting along quite well for a number of months. My head has been in a good space (or so I thought). The aches and pains are easing off a bit. Sleep is not too bad mostly. Hot flushes are down to annoying rather than atomic (unless I am working in the sun). The other side effects I have been ignoring because I am tired of thinking about them. Go with the flow and just let everything bounce off. I’ve been sticking to my “say yes to all invitations” thing, so camping, catching up with friends once a month for dinner etc etc. No scanxiety through the last two MRI’s, (excluding the cake incident but that was pissed off not upset) CT, another u/sound last Thursday and they throw in a surprise mammogram for good measure. Go through the motions, wait for the results, repeat in 3 months. It’s been six months since I shed one tear over this shit fight or anything at all really. I decided that nothing that wasn’t a tragedy was going to bother me anymore. Life’s too short right? Yep, got it under control. So WTF went wrong????????????? A series of unfortunate events appear to have created a landslide. The start is just a mix of stuff from lack of work (please, please rain) and money; to muttering FFS whilst picking up everyone's crap around the house and thinking about the mountain of maintenance the farm needs and no funds to do it. I lost my referral for the u/sound and had to chase up the BCN for another one the day before etc etc etc......Everyday normal stuff right? I went to training at work for another section of the new digital system and had a complete brain malfunction. Apparently, it doesn’t want to work this day. I take nothing in and am still none the wiser. It’s ok, don’t worry, they will give you another training session. Come on brain, get back on board. Screw you HT.! FTS So far I am keeping my shit together, but I can feel the slide starting. Ok do something for yourself. What? I cannot think of one thing that I really want to do. What will make you happy right now? Apart from winning the lotto I can't answer that question. Then it hit's me, I have done nothing for myself in months and I have no idea what is going to make me happy. Zero excitement. In the words of Pink Floyd, I had become comfortably numb. I've given up trying to learn the guitar because daily life got in the way, I sucked at it anyway and my wrists started to ache. So I am feeling pretty restless and agitated by now. I've slid back into normal boring habits. That was not going to happen! I was going to do differnt things. Even my "say yes to everything" has been nothing of my choice. Apart from dinner with friends which I enjoy. I go camping because everyone else likes it, they've got me going to the Birdsville races, which is kind of cool but I hate road trips and I have enough, dust, dirt, horses, flies and critters here, plus it's a fucking logistical nightmare to leave this place. Oh, and guess who will have to organise everything? All our girls went out the other night and we decided to take advantage of that and have a romantic night together. Hubby was trying to make me feel better. Well, that side of things is like a disappointing birthday party these days so that was it. There was no coming back from the pitty party then. Sad, tears and cloudy fog of doom for the week. I even banned myself from wine, and when that happens the world is about to stop turning or I know it's going to be a really bad idea to go down that road. Thanks for listening lovelies. Feeling better now. xoxoxoxo
I'm not impressed!
TL;DR - If you are a patient at public hospital in Brisbane, check your mammogram & ultrasound appointments. They may no longer be there. I had my second year mammogram and ultrasound today. It sounds so simple! I was diagnosed in late February 2018 by (private breast clinic) and referred immediately by my GP to a public hospital as they have a great reputation for dealing with breast cancer. And at the time, yes, they were fantastic. I was seen within about 2 weeks (on a Monday) and a week later I was admitted and have my lumpectomy on the next Monday. Wonderful! Public system at its finest! Nasty tumour ripped out, sentinel node biopsied. All good. I was assigned a breast care nurse (2 actually who job shared) and had follow ups with the surgeon and visited the Breast and Endocrine Clinic as required. Fantastic! Delays to appointment times but meh, it is what it is. No complaints. In March 2019 I had my first annual check up. Queried the technician about getting a 3D mammogram. Apparently the machine has the capability of doing this but no one was prepared to pay for the licence to activate it and turn it on. Had an ultrasound - technician noted a couple of cysts but nothing concerning. Had the follow up appointment for test results at the BE Clinic. Saw a random doctor who claimed to be some kind of breast specialist. I was also told I'd never see my surgeon again. She said the report was all clear. Yay! Great news! However, when I specifically asked about cysts, she said oh no, there aren't any. Hmmm suspicions raised. I asked about breast density. She couldn't give me a definitive answer. I asked what stage was my cancer (knowing it was Grade 3 but not stage). Oh, the response was, we don't use stages any more. Uh really??? Totally forgot at the time to ask for a copy of the report. When I followed up about a week later, breast care nurses said, not our problem. Email these people. So I dutifully emailed my request and heard nothing. And still heard nothing. Followed up 2 weeks later to be told they had never received the original request. <cough bulls*t> Eventually got the report and it was a drawing with some scribbles on it. Not exactly a professional document. So 2 days ago, I was mentally prepping for my exam this year and received a phone call from Qld XRay at 5 pm the day before my exam saying they are going to schedule my annual appointment. WTF? Apparently the public hospital have outsourced their mammograms and ultrasounds to Qld XRay and did this in November 2019 and obviously didn't tell anyone. Qld XRay also thought my appointment was 4 April and not 4 March. I told her, no no no, it's definitely 4 March and I'm holding the appointment letter in my hands right now. Of course, no availability on 4 March so I was rescheduled to 5 March. Not too bad, just one day delay. I can cope. But how furious I would have been if I'd turned up at the public hospital to find out it had been cancelled with no notice. Thank goodness I did get the phone call. So today I rock up to Qld XRay and I am very impressed that the first thing they do is give me a 3D mammogram. No mucking around with old 2D stuff. Excellent!! Ultrasound very thorough and I'm totally on board with the lovely staff. And the best thing is you have access to a Qld XRay online portal and can see your images within a few hours! No report thought until you've seen a doctor, then it becomes available. Anyway, they contacted the public hospital to get copies of last year's scans and results and hospital promptly tells them that they have no record of me. That there are no scans or results in their system. Are you #(*&ing kidding me? This after receiving a text message today reminding me of my follow up appointment at the hospital for next Monday. So Qld XRay has had to send off requests on my behalf to private breast Clinic and Breast Screen Qld (where I had a couple of scans done about 6-7 years ago) to try and source comparison scans. All of which is going to delay my report getting to my various doctors. So the public hospital - not good enough!!! Not happy at all. I don't know what's happened there over the last 1-2 years but something's not right internally. I shall be very interested to see what happens at my appointment at the BE Clinic next Monday. Sorry for this long and ranting post but I just had to vent. We rely on this stuff to go smoothly.Sleep
"We know that as many as 6 in 10 cancer survivors have problems of insomnia, which is up to three times the rate found in the general population." @SoldierCrab pointed out the Survivorship Center and I found this leaflet in their resources: Can-Sleep making night time sleep problems go away from the Peter MacCallum Cancer Center. It's got a lot of very straight forward information as a starting point, but I want to hear what you've found that has helped you, and how you have handled 'the vicious cycle of sleep deprivation' if you've experienced it. I have felt fatigued, lethargic, and overall exhausted since it all started, and when it all finished (in that it-never-finishes way) I was left feeling not much better. I spent an entire year spending days and sometimes weeks as hit by fog, poor memory, physical weakness, and even nausea as hard as if treatment was starting again. For me this is a BIG issue. I'm sure I've posted and asked questions about it before, but all the conventional 'tricks' don't seem to cut it. No caffeine even eight hours before bed, exercise, cut out screen time and cut back on sugar? Done. [Tosess around for three hours and stares at the ceiling in the darkness for another hour doing the most mundane mind-calming exercises] Okay, cool, when does the sleep happen. Oh hey it's 6AM, guess I'll get up. [Fast asleep on the couch by 2, awake by 5, goes to bed at 10PM, wakes up at 3AM] This is better I guess, I'll stay awake all day and get a really good sleep tonight! [Falls asleep at 9AM] ...Damn it! What actually works?Year three N E D
So technically it was Thursday but anyhoo...stuff got in the way. We've been pinking it up at work for the last couple of weeks. Yes, I still like pink, the brighter and blingier the better. So that's been a lot of fun and we've raised a good deal of money. I am grateful for my job it keeps me appreciative for what I have. I tried to come up with some words of wisdom but we all know this thing is just a matter of a muddle through for a bit. I’ve decided I don’t want my old normal back; I want better than that. Nor do I want to waste time waiting for things these days. I got to feeling close to old normal early this year and it wasn’t enough anymore. Be caureful what you wish for huh? This was surprising, I wasn't quite sure what to do with it, that was the end game right? It took a while to work out where to go from there. I’ve made a few changes. Some have been a natural progression given what’s gone on and some I’ve had to work on. For the most part, I feel stronger than ever and I push myself harder than before. I commit to a lot more and I take more chances because why the heck not? Nothing spectacular, nothing that’s going to change the world. Just stuff that I wouldn’t have done before or excused myself from. Do it now, there is no time to waste right? On the other side I am more empathetic (for some things) and allow myself to feel more. I still have my ability to be an ostrich and shut shit down until I can get my head around it which works well for me but I can now talk about what bothers me and cry when I need to without caring what anyone thinks. I have you guys to thank for the last part. Xoxo In a nutshell I am happier with this version of me than the old one. I feel more....balanced I guess. It’s not all sunshine and rainbows and the wheels still fall off occasionally but most times I can do a pretty quick pit stop to get them back on now. I think the thing I am trying to say is you have to find what works for you. We all know ourselves pretty well so chuck out that rule book. Do what you can and don't feel bad if you're not getting that long list of stuff you should or shouldn't do done. Expect a lot from yourself but be happy with a little, Any improvement is already better than things were 10 minutes ago. Take notice of the moments. You need them to hang on to, enjoy and aim for more. You already have the skills and strength to get through. Look how far you've made it already. You never know, you might just come out the other side better than ever. I still have all my naughty vices , sarcasm, dark sense of humour and swear like a sailor but I am far more adaptable, everything is variable. nothing is black and white anymore. Unfortunately it is not 50 shades of grey either LOL. That’s still a work in progress. Love to everybody and thank you for listening, guiding and the laughs over the last three years. Wear the sparkles, (or cowgirl boots and jeans, whatever the day feels like) and the Chanel to work if you want, don't save it for later, drink the wine and eat the damn cake. Blessed are the flexible for they will not break. You've got this. xoxoxoxoxoxoxooxoxox
Oncologist Response to Fear of Recurrence
I went to my checkup with my oncologist on Thursday and I thought it worth sharing. I like my onc and trust him to be doing the best for me but I know that to a large extent, that's on faith and recommendations from other health professionals. He's a fairly quiet and reserved man who I have come to know more over the last 11 months and in all of my dealings with him, he has shown concern and care. Some of you might remember that a few weeks ago I had my treatment review with my surgeon (another one I really trust) and he dropped a bombshell on me that my cancer was pleomorphic and that it quite possibly had only been there for 12 months, maybe up to 2 years, prior to diagnosis. Now, this may have been told to me early on and I just didn't take it in. I still didn't really take it in when the surgeon said it recently but it has played on my mind since and of course, I looked at Google for pleomorphic lobular and didn't like what I read. Anyway to get to the point, this, in my words, is the gist of what my onc told me when I asked questions on Thursday: Firstly, they can only estimate how long the cancer has been there - there is no test that works backwards. My prognosis is good and the numbers are on my side against a recurrence. With Letrozole, it is even better. Obviously, these are statistics and while statistics tell a story, they don't help the individual. He said that he knew for me, there is only "cancer" or "NED". But at this stage, I have to believe in NED until it is shown to be otherwise. Because living, thinking every twinge or pain is a recurrence, is no way to live. And between him and my surgeon, they will be monitoring me closely. He also said that he knew that trying to live without anxiety of recurrence wasn't an easy thing to do but that it was really important for my mental health to try. His final words on the topic were that the best thing I could do to help prevent a recurrence was exercise and fitness but at this stage I had done everything I could do and that now it was time to try to get back to living. Before anyone gets upset with this, if I haven't imparted the tone of the discussion properly, that will be purely my fault. At no time was my onc suggesting that I was being foolish or that my feelings were unfounded. And these are my words because my memory is terrible (something he is aware of and understands!). This was all said in both a very professional and considerate fashion. I hope this helps someone who has gone through treatment and is trying to deal with the anxieties of living afterwards. While I know that I won't stop worrying immediately, I do hope it lessens. I was dealing with a pretty dark whirlwind of emotions prior to my appointment and what he said has certainly calmed that significantly. I have to try to live with what has happened to me. I don't know how much time I will have - 1 year or 40 years - no-one does, BC or not. But I do know that I don't want to live them under a constant cloud of anxiety.