Be aware and be safe with Beyond Blue
I often read of members wo are going through tough times but don't have easy and timely access to a counsellor. A few months ago attended a session for people who feel anxious or depressed and we were given a fantastic tool to help us through the bad times. I completed my safety plan when feeling really 'up' and when I am alone and really 'down' during this Victorian lockdown and the whole pandemic worry I get it out and feel it does help me to get through. The plan is simple but works. If you have this tendency I hope you will take the time to view and complete this. https://www.beyondblue.org.au/get-support/beyondnow-suicide-safety-planning/create-beyondnow-safety-plan Sending big hugs to all. đź’–
INVISIBLE WOUNDS and The Power of Words.
I have a sad but true story about somebody who thought his feelings weren't valid or acceptable. At 3am one morning a man turned up at his home in a taxi. His wife didn’t expect him, surely somebody would have told her he was coming. He was snuck in under the cover of darkness, without announcement, so he wouldn’t have to deal with the fall out that would be waiting at the airport during daylight hours. He was told not to speak to anybody about what he had seen or been involved in as nobody wanted to hear it, some people thought he shouldn’t have been there anyway. There was no debriefing, no counselling and nobody to talk to. Anybody who hadn’t been there wouldn’t have understood any way and the only ones who could comprehend were under instructions to be quiet and keep a low profile. He wasn't to make other families scared or angry if they still had relatives over there. Nor was he to lower morale of anybody about to go. He was told to have the rest of the week off, get back to work and on with his life. Toughen up. It could be worse, he could have died there right? At least he was alive. He was never the same. How could he be. There were no forums to be able to express the ongoing fear, the anger, the depression, the nightmares, the daily pain. No validation that his thoughts were normal given the situation. No empathy for the constant anxiety. No friends to say, hey mate, I know how your feeling. I get it, I’m here for you no matter what you want to tell me. Those things could not be let out until somebody decided it was acceptable. By that time, it was too late. The years of keeping all that locked up, feeling like nobody wanted to hear what he had to say, that he was weak for not being able to get back to normal and just put up with the fallout had turned into a bottomless dark pit with seemingly no way out. The story finishes at the end of a lonely dirt road with a car, carbon monoxide and a devastated family. There have been many discussions about likening a cancer diagnosis and all its fallout to PTSD. There have been a number of discussions closed (and rightly so when it becomes a slanging match) when things go totally off tangent. Moderation by the moderators is at their discretion and this is their gig. However, what is not helpful is being moderated (even unintentionally) amongst our own community. People are encouraged to see councilors and talk it out. Sometimes all that is needed is a good chat on here. Everybody’s safe place right? We all need to stand and support each other together or some of us will fall.
Breast Cancer & it's psychological affect on your Mental Health
I haven't listened to the broadcast .... but this is very much a topic close to our hearts. Our diagnosis and treatments really DOES muck with our brains ...... sometimes, longterm, even forever. PLEASE - if you are in any sort of turmoil with your treatment, make sure you chat with the helpline here 1800500258 or try & see a psychologist to chat about your distress. https://www.breastcancertrials.org.au/research-blog?name=the-psychological-impact-of-breast-cancer&fbclid=IwAR05x0kVWb12DTLG4JCg_daVJy88D6C23zaJbRklZj3mcJUOYosN7Xo1bfEYour 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.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
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?
Tears in the Dark.
Last night, My Wonder Woman Shield got laid down. I took the suit of Armour I have been wearing since the day I found out I had Breast Cancer in February and I smashed down the wall I had built around myself for protection and unleashed the ocean of tears that been closed up inside. In the quietness of the night, I howled and gasped for breath as the heaving wave came crashing around me. Why, did it happen last night? Simply, the fear, the worry, the unknown and frightened woman I have hid away needed to let go and accept for the moment, I had done all I could and it was okay to feel the fear. I cried on and off for hours, whether awake or in my sleep - I just cried and cried. This morning, I dressed, ate breakfast ,swallowed my first dose of pre meds and went to the Chemo Clinic with my Husband at my side to begin my first round of Paclitaxel. (Due to some complications from surgery - they switched me to 12 cycles of Taxel then the 4 x 2 double doses to give my white cells a boost - hopefully). I got greeted, walked into the inner sanctum of the Chemo Ward, asked to choose a chair - next thing the fucking fear, reality, shock hit me and I took off, out the door, gasping for breath and crying looking for the exit. That really shook me to the core - that need to run! Holy shit, never in my life have I run when faced with adversity. I have always stood there and fought even I could fight no more! Not today - I wanted to bolt, run, hide, never face anything again! it took my husband, my breast care nurse, two oncologist nurses to guide me inside, place me in the seat and soothe me back to the Lois they have come to know - The Warrior Woman. They let me weep, while i told them of my shame at my behaviour, the loss of face before the other brave souls within the room who had witness me bolting for the hills at high speed....then told me it was time. The fight was over, I sat there and accepted there was no where to go but to sit quietly and let Chemo and the Chemicals, play their tunes and fight my battle for me. Just like to point out - that there a song through my head, I normally play this song, when I am feeling overwhelmed and do not have the place to scream out loud. It is a song called "Stranglehold" by Ted Nugent. That played over and over as they put the cannula in, turn on the drugs and I felt it begin to flow throughout me. I did have a reaction to the dose - almost within minutes. Shortness of breath and a flushed red face hit me. Holy shit was i bloody frightened. Next thing I had a swarm of staff around me. Gentleness prevailed, not one bit of hysteria emanated from them. That helped me so much - the calmness, methodical protocols they applied and I was given a 20 minute break before they halved the dose and I was able to go ahead and finish the dose. I must admit the Phenergan helped and I fell asleep for the next 1,.5 hours before being gently woken with "Lois, Darling - you have finished your first cycle - Congratulations!" I burst into tears of pure utter relief and joy! As the night has begin to come now, I feel a sense of peace prevailing. I still have had the odd moment of bursting into tears over anything and everything but that is okay! The confidence and hard core Bitch will once again pick up her sword and Armour and come out to fight but just not today. Wonder Woman is having a rest. Lois has bought herself a nice packet of Phenergan and for the first time in 2 weeks, she is going to knock herself out tonight and sleep! Sorry it is a long post - I never could just write two lines! Just like to point out I am a novelist..lol So - I will finish this post with one song you will know - "Let it Go, Let it Go!" Love to you all and Big Hugs. Lois ( who did not know she possesses the talent to sprint 100 metres to no where - in a nanosecond)Memory
For some as a result of diagnosis and treatment the effect on our memory can be distressing - fatigue or chemo induced or anything else in between, stress, anxiety, menopause! I have a sister who has early onset Dementia and on the road to diagnosis she was seen by a health professional, Neuro Psychologist. She has written a book and there's a precis of it here that some may find interesting or useful to someone you know Memory-wise - Dr Anne Unkenstein -- Allen & Unwin - 9781760296384 - Allen & Unwin - Australia (allenandunwin.com) Best wishes to all
