Light at the end of the tunnel

It was a long time ago @AllyJay but it must’ve been devastating. Truly 😢😢. That was a beautiful send off though, he was obviously very loved and respected ♥️

AllyJay,,

OMG how horrid to know you were going to hit that ground and maybe not survive.

What a way to go out tho with all those people and those songs are amazing. I am so very soon for your loss. 

@Kathyjane, my brother died in 1996 in a skydiving accident. He was taking part in the National Championships in South Africa and had a bad (very bad) landing. I reckon he had time to utter two words, and my guess is the first was "Oh" and the second was "Fuck"!!! His funeral had over a thousand attendees and included skydivers from all over the country. Songs played were Queen's "The Show Must Go On"...Elton John's "Don't Let the Sun Go Down On Me" and my best one...Queen's "Another One Bites the Dust". His coffin was covered in his unpacked parachute instead of flowers, and his rig was then packed and presented to his widow at the cemetery. (Much like folding the flag). The following Saturday, at his home dropzone, three hired large planes took up 99 jumpers to form a very large circle formation, and the 100 th empty slot was his. Blue Skies Geoff.

Hi Brenda 

Yes in the beginning it was all those tests for me too but now I have a Bone Scan every 6 months (one due tomorrow 15/04/2021).  They are a little stressful as I never know what they are going to show. Last month my cancer markers were up a little. Last week I had a gastro bug for a few days so I am expecting my markers to be a bit out of whack again but my bloods are not due till next Tuesday so won't know until next Wednesday. This waiting around every month to find out is stressful as well. 

I am finding that life is moving at a warp speed as I am on my immunotherapy meds for 21 days then 7 days off. Last night was the last of this round (19). So 19 months into this next journey is now complete. Research is;  Ibrance and placebo, reoccurrence is 14.8 months. Ibrance and Hormone blocker 24.8 months, so I am heading towards that 24.8 months at a speed I just can't seem to slow down. 

My mental health is ok. I do have Blah days but nothing too bad. I cry and get it out of my system. I have seen a Phycologist and yes she helped but ...... 

I think my line of work actually helps me more. Registered Nurse/ Clinical Facilitator with Universities looking after Nursing Students whilst they are out on placement. I use my situation as a learning point for them, I guess it helps to see that not everyone with cancer is bed bound and dying within weeks of diagnosis. 

I hope you are doing ok at the moment and you find something to keep the dreaded black spots away. 

The only scan I have had apart from heart xray and ultrasound and mammograms and ultrasound with that, is a bone density scan after 3 years of hormone reduction therapy. I passed that ok and it is 5 years since my initial diagnosis.
I think treatment aged me 10 to 20 years! Either that or its this stupid menopause which thankfully is getting better.
Don't neglect your mental health. If you are having problems, see a cancer psychologist. I missed out on that. My area didn't actually have one at the time.
Eventually I saw a psychiatrist who said I had PTSD, anxiety and depression post cancer treatment. I couldn't tolerate his meds and ended up on cannabis oil. After that he said I seemed ok and dropped me as a patient. Trouble is, he didn't address my mental health further and over the years it's been tough. I soldier on though and hopefully I don't have any mets to worry about yet.
All the best for the rest of your treatments. <3

Afraser,
I believe that if life were to take a turn for the worst and I should pass not from this disease that I now have, maybe an accident off my bike etc,  then I still would want a send off not like what we all expect a Funeral ceremony should be. I want fun, songs that are not morbid but up lifting. I am 55 not young but not old. Life is throwing me a curve ball but I will keep giving to others until I can't. I am also a Registered Nurse/Clinical Facilitator, an Authorised Marriage Celebrant, Funeral Celebrant , a JP, and soon to be  Funeral Director/planner. It is what I am meant to be doing until I can't do no more. 

I’d welcome a thread on this topic - my philosophical acceptance of death has been a significant part of my health and well being post cancer diagnosis. My issue was not death from cancer, just a rejection of death full stop and a concomitant denial
of ageing! Daft but true and I doubt if I am the only one.

Hi Arpie,
Thanks for your comments. I agree, it is a topic on its own. 
I just want death and dying to not be a horrid topic. Although some deaths are horrid, Life should be a Celebration no matter what age we leave this world. 

I am So sorry to hear of the Stage 4 diagnosis @Kathyjane ... it sounds like you’ve got it as under control as you can! Good on you for getting your Motor Home and bike and still getting out there, having fun! AND reinventing yourself  as a Celebrant too!  Well done!

Yep ... it makes sense to organise your own send off .... and to celebrate it with your buddies before you go ... WAY TO GO, girl!   You could do a standalone thread on just that, I reckon!

take care xx

Hi, It has been 4 years and 8 months since my last post. 

I have been reading back over this chat and wow how that time changed my life and everything around cancer. 

So on July 28th, I went to Auburn Hospital for my operation under Dr Lucia Saliba. 4 hours into the operation she was notified that I had 44% cancer cells in my Sentinal Node so other nodes were advised to be removed. 23 nodes later,,, gone. This then brought my operation up to 6 hours. Recovery went fairly well. 

I was able to go back to work 2 weeks post op and did light duties and haven't stopped. 

Unfortunately, at pre-op there was no indication that I had an aggressive form of cancer so I had to undergo chemo, which was not discussed previously, only Radiotherapy treatment for 6 weeks. So fast forward to September 16 and I am going in for a Port a Cath insertion at Prince of Wales as there was nowhere doing them at the time I needed to start chemo. 

I had the first 3 lots of aggressive chemo and said no more. I was still working and no quite sure how I go through all of that but obliviously I did.  I then went onto 3 more doses of chemo and again said no more. I never wanted chemo in the first place and should of stood my ground but I listened to the Dr's as it was routine, well routine is not always right for everyone. Radiotherapy was also dropped to 16 days with 10 shots per visit, so 160 doses.. and yeah the boob is now fried and wont move..although it is getting softer to touch. 

So from Jan 2017 - Oct 2019 I got on with living. I ended up with Lymphoedema in the left arm,, not good but I have a great network with the Lympho Therapist and sleeves.  I was going really well, working, riding my motorbike and just getting on with things. 

In July 2019 I got a very sore left knee, thinking it was just arthritis I let it go for about 10 weeks. When the pain became so bad I went to a new GP who sent me for ultrasounds.... nothing other than OA. Ok, so lets do a bone scan just to have a look and see. 

Scan was done on a Monday, results were to be picked up on a Wednesday. We didn't find the answer to the pain in the knee, although there was OA but they did find 5 lesions in my bones. 1 in the skull, L1, L2, L3,L5. no symptoms at all. 
Ok, so where to from here. A new Oncologist (the last one and I did not Gel). New medications, Immunotherapy meds. Palbociclib 125mg and Arimidex 1mg. Three months later I had another bone scan to see how it was all going. Damn again, another 7 lesions. T11, S1, L4, Hip and Socket joints, and hip area. So all up 12 lesions. They did a biopsy on the S1 and I would not wish that on my worst enemy, it bloody well nearly killed me. The results came back as the same Breast ca as before so this was treatable. 

During this time in Oct 2019, I became a Nanny to my little man Archie.. I am so in LOVE. 

Fast forward again to 2021. A few more bone scans every 6 months, blood tests every month for ca markers, 21 days of Palbociclib, and daily for Arimidex. I am now 18 months into this next journey with Stage 4 Metastatic Breast Cancer. 
I still work as a Clinical Facilitator for Universities looking after RN Students,  although I feel tired all the time. I still ride my motorbike, hubby and I brought a Motorhome to start going away,. 

In 2018 I did a Cert IV in Celebrancy and became a Marriage Celebrant in March 2019 and I am about to go down the pathway of learning how to be a Funeral Planner/Director. I am currently a Funeral Celebrant. This is my business and I love what I do. I am also a Justice of the Peace now. So yes life is somewhat busy.... hahahaha... well totally busy but I love it and it will keep going as long as I can keep going. 

I am in the process (slowly) of planning my own funeral. It is not morbid, it is reality and I want to go out the way I want. My family will just follow my lead and plans. All going well, I hope to have a pre Funeral party and have all my friends and family there to see me before I kick the bucket, but I am also very much aware of living while I can. 

www.lovelisallaroundus.com.au
This is my website and it means I get to share my love, friendship and hope with everyone.