Eye health changes
Hi all, wondering if anyone else has experienced deterioration or changes in eye health? I’ve recently been diagnosed with early macular degeneration and a slight worsening of pre-existing glaucoma (a condition in my family). But on a day to day basis I have noticed my eyes (over the last five months) have been consistently red, sore and very dry, even after sleep (Hylo Forte drops relieves them) and even when I take a break from Letrozole, the daily Aromatase Inhibitor medication I use. I wondered if weakening eye health is one of the longer term side effects of chemotherapy treatment. It’s about a year and a half since I completed the 17 month TCHP chemotherapy and immunosuppressants, surgery and radiation treatment for triple positive invasive lobular cancer (ILC). I’ve seen a couple of posts on this topic dating back to 2017 or 2018. I am conscious my mother developed macular but she was in her early 80s when it presented and it compounded her sight issues from glaucoma so she effectively couldn’t drive or see faces and images. Whereas I am about to turn 64 (happy days!) this weekend, I’m still in the active workforce and I hope to have more of a runway with my eyesight to enjoy the environment, the arts and the beauty of family and friends.
Are you a breast cancer survivor who happens to be childless?
I have been a member of this online network since 2014, just after my diagnosis. At a recent breast cancer seminar at a city near where I live, something hit me like it hasn't in all this time, the subject of survivors who happen to be childless. I thought to myself, "Noone talks about this. Why?" This has led me to do my research, as you do, I found this demographic of women are at higher risk of breast and ovarian cancer. It is explained this way, you are at a lower risk of diagnosis if you have children. Interesting I thought, Nuns are at a higher risk of breast cancer and ovarian, not that I am a Nun but an interesting statistic that gets me thinking. Which brings me to why I am posting. I am putting it out there in a courageous way to see if there is another like me. Courageous because for 30 years after my extensive efforts to go forth and multiply I walked away childless. The one thing I learned was to keep it to yourself as I found there were lots of people willing to give you their advice, just like they do with breast cancer 'cures', an emotive issue is best kept to yourself for your own emotional survival. I am running a personal survey just to see if there are other women within this network who are in the same boat as me. Does anyone else feel a little left out when sitting in a seminar and not to be included in the discussions? I tell ya, there is a real sense of alienation, but culturally we are told to, 'just get over it', which is fine and life for me has been fulfilling in spite of it all. My GP doesn't know of another single patient like me which isn't very encouraging in finding my tribe, my mother always said I am different when all you want to do is be like everyone else. So please step forward if you are like me or if you know someone who has a similar story. I feel it is a subject that needs discussion and inclusion because in society we, the childless women are 1 in 5, by choice or by circumstance. Cheers Janet
Dealing with unhelpful comments
Hello everyone I’m just reaching out to see if anyone has some wise words on how to deal with the less supportive people in your life. After a great day yesterday with amazing friends my in-laws decided to pay a visit. They come with their own issues and challenges which the family have grown to deal with in their own way (positive and negative). But today my father in law abruptly asked in front of the group (namely my husband and 7 year old daughter) “so what’s your prognosis?”. I’m not sure what I was expected to say. I’ve been diagnosed with metastatic IBC but have been responding really well to my therapy so far and we’re seeing results which we were happily chatting about. My daughter was upset by this discussion. Quite upset I just went up to bed claiming fatigue but cried for the rest of the visit. My husband who has been on the brunt of this for most of his life was very supportive thank god. I know everyone deals with things differently and we don’t always say the wrong things but this completely flawed me and put me back a few steps emotionally. Thanks for listening xo
I think, I hope I have learnt my lesson. NO is not a mean word
Its been quite some time since posting anything. I do get on and have a quick browse for inspiration. And insight into reminding that I’m not alone and that What’s happening etc someone else has something similar regarding my Life since BC, 4+ long years Back to my TITLE. I was doing alright saying no for a time but back to my old habits, someone asks and I say yes before realising what the impact on me will be. between work and my regular babysitter (grandkids) duties which I love doing. I have over committed myself again and have left myself so tired after the other requests I’ve said yes to, I waste one of my days off in bed after lunch and not able to get up till it’s time to get ready for work. As I’m having my 6 month Oncologist check up next week along with the usual tests before that. I said you are going to have to make other arrangements as I can’t fit it. Organise something else, quickly answered oh I’ll just go stay at ?! Place. Thats when I realised was being used by an 18 year old lazy brat that played on my generosity and sympathy. I’m determined to get my life back. Regular walks Get Back into my hobbies visiting my friends and family again back to healthy eating at regular times. Wish me luck getting it all to happen
Trying to cope day to day
the past few weeks have been a true roller coaster for me. I have found in the past few days, my emotions have hit a low with crying, a sense of anger at the unknown of what lays ahead and last night was particularly bad - I told my husband that I was truly afraid that I might not survive and what if this period of time was all I had to enjoy? I have surgery next week and as much as the medical team have given positivity - there is an element of fear which comes from the fact "a bloody lump is growing in me!" I know they will cut it out but who is to say it wont come back or turn up somewhere else that is not visible? My emotions are on hyper drive and I do feel incredibly lonely even with my family doing everything in their power to support me. There is almost a "need" to be positive for them and myself but some days I am so damn tired from doing so. Illogical I know and it is ok to say "Im not doing so well today". for the first time since I was told "It is Breast Cancer" - where my response was to go into "fight mode" and literally almost pretend it was merely a bump in my life. I woke up from a sound sleep - yelling "I have Cancer!" over and over. Then broke into a hysterical bout of crying, sobbing and quietly screaming as it hit me - I have bloody awful frightening Cancer. It is not a bump in my life - this bloody thing growing in me has the capacity to change everything. Some days, I think to myself - I will beat this into submission and the power of positivity thrives but in the quiet of night - a multitude of images and emotions hit me like a ton of bricks and I end up weeping. The pain radiating from the damn lump that has grown dramatically due to its aggressive behaviour is like an endless ache and as much as I know it is "part and parcel" of the cancer - is a constant reminder that this nasty little visitor in my body has taken some of my control. I am sorry this is a long chain of thoughts. I just needed to let it out somewhere. Lois.
My Otis Retreat
Hubby and I arrived back from Thredbo on Sunday - after 9 days away - including 5 days in Creekside, the Otis Foundation retreat in Thredbo. We stayed in Sydney for the first night with my brother & SIL, then down the coast to Batemans Bay with another friend ....who has just taken delivery of a gorgeous miniature schnauzer! Talk about drop dead gorgeous! Creekside is wonderful! A massive 4 bedroom home with 3 bathrooms, large lounge & dining rooms & gorgeous outlook to the mountains ..... it wasn't as cold as I thought it might be (that may be changing this weekend tho, with the big cold snap passing thru!) I scored the master bedroom on my own (as hubby snores & I figured I may as well sleep 'well'!) One of the guest bathrooms - There was even a Sauna! (We didn't use it tho!) The river (and golf course) was just a short walk away & I flicked some fluff, to no effect! (I am a better salt water fisho than fresh!) One day was a tad wet, so the boys went for a swim instead I found this game in the Sallies - and it was the HIT of the trip! Everyone wanted to play it!! The 6 piece lengths bend at specific spots & can be positioned in any way they bend, on the board! You try & match the pics below. Some were VERY easy - but when up in the Senior & Wizard puzzles - VERY tricky! This was where the Thredbo disaster was - when the hill gave way & 2 or more Lodges cascaded down the hill, killing 16. :( A very sobering moment. Nothing will be built here, ever. Stuart Diver still lives in Thredbo with his daughter. He lost his 1st wife in the avalanche - and his 2nd wife to Breast Cancer. He is a spokesperson for Breast Cancer. A solitary fly fisho!! The trout were just behind those rocks in the front! LOL We saw some thumpers in this run - my brother & SIL spotting them!! We saw a heap of animals - deer, goats, gorgeous mountain birds ... it was just lovely getting out & communing with nature We had a glorious time down there - and plan on going back to investigate it further, probably using Jindabyne as the base - as it is more reliable with the weather (and has the lake so I can put my kayak in for a fish instead of being shore based only!) I did lots of walking too, which surprised me! Tho the weather didn't allow us to go up & do the Kosciusko walk (thank GOD!) as the mountain tops were closed in every day. We saw a family of 6 coming down in the chairlift in the pouring rain one day - it didn't look like fun to me!! It is just wonderful that families like the Humphries make their 'holiday homes' available to us - and reading some of the comments from previous recipients - it was all very moving. If you haven't looked into an Otis Retreat - I would urge you to. It can be for you alone, or you & your family and/or friends .... they have retreats available in most states (except Tassie and NT.) I understand there are not many in WA :( The only cost to you is 'getting there' and providing your own food and drinks. Everything else is catered for. Take care xx
Are you childless ?
Some new members may not know there is a private Group on this site specifically for childless people. There are times when childless members have issues which are specific to people who do not have kids so perhaps you would like to join and chat to others who have been or are going through the same struggles as you. Contact @"Janet A" for more info. Discussions within this Group are not shown on the main pages of the site so are private. Look forward to seeing you there ! AnneHome from holiday
mixed emotions coming home. Whistler Canada was like a fairytale land. The cold agreed with me the lymphodema stayed under control and the swelling on the flight was no more than a hot day here at home I was certainly glad I didn’t have to suffer that lot. Left Sydney on a 45 degree day and arrived in. Whistler to a low of -3 to about 2 most days. The Wedding was spectacular seeing them marry where they met at the stone circle in a sprinkling of snow. And after the ceremony they snow boarded down the mountain in their wedding gear. If only I could afford to go back. I would spend every summer there. LA was different and Disney fun but was a bit disappointed the best parts were closed for maintenance. At least while I was away it was like the last few years hadn’t happened but now I’m back and nothing has changed. Same struggles. Oh well reality bites and I will soldier on. Next is to get some real hours back at work. If there are any available
