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Afraser
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Joined 11 years ago
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Re: Frustrated by Perfect Survirors
Kyra I am not a fan of the 'survivor' tag - people who've had heart attacks, broken hips, or other painful ailments with long term implications don't seem to need the tag. Ditto 'battler' or 'warrior'. Just as cancer is not one thing, recovery isn't either. The intention of the tag may be pure, a pat on the back, we've all done a great job. But sometimes you really don't feel great at all. I am one of those who did do well. But this site is the only place I (irregularly) talk about cancer. One of the things I do say is that trying to get back to your 'old self' isn't possible. Not for any doom or gloom reason, simply that while there may be somewhere in this vast universe where time runs in different directions, we live on a planet where it doesn't. We can't actually go back to anything - not our childhood, a happier time, not even a holiday. We go forward. I didn't go back to my old self - I found counselling very useful. It was only a short time, but it focussed me on what I wanted to do in the future, better, more satisfyingly rather than continuing everything I was before. I started a new job (68), with a compressed week so I had a three day weekend and the same income. Like you, I joined a gym (never too late). Started some philosophy courses. I live with peripheral neuropathy, lymphoedema, an arrythmia and one boob, but it's the only body I have and most of the time it does me proud. The person you are now sounds pretty gutsy to me, perhaps she just needs more time in the sun. Very best wishes.9Views2likes0CommentsRe: Suffering with Letrozole side-effects weeks after coming off it…
Unfortunately experiences are highly individual and varied. What works for one doesn’t work for another. I was on letrozole for a full ten years. It ate into my bone density (which happily was very good before I started) but no aches, pains, flushes or anything of the kind. It’s neither fair nor unfair. You are doing everything you can. It’s worth sticking it out for another month or two, it may take that long for your body to adjust. Then you go back to your oncologist and ask for other options. Letrozole can be part of recovery (I am fourteen years NED) but it can also make your life miserable. Look for some light in your tunnel. Best wishes.27Views2likes0CommentsRe: surgery loomimg
It rather depends on what your surgery is (lumpectomy, mastectomy) - I am assuming a lumpectomy with only one night in hospital. I had a mastectomy and found it all very straight forward. Drains were removed before I went home (with a lumpectomy drains are unlikely), I had no pain, my arm mobility recoved very quickly and I took only one week off work. However.... it all depends on how quickly your body heals (I have always been a quick healer), how you feel emotionally as well as physically and what preparation you may want for further treatment (if any). Leaving yourself time and space to encompass any outcome is always sensible if you can do it. Best wishes.41Views0likes0CommentsRe: surgery question
I had two drains for about three days, but I had a mastectomy. The drains were removed before I left hospital and were a slight nuisance but nothing more. If you have a lumpectomy, chances are no drains. But it's always best to speak to a professional - a breast care nurse if you have one, your GP or the helpline, as suggested, rather than worry. One of the early learnings about cancer is to avoid worrying about something you may never have! Best wishes.72Views2likes0CommentsRe: Working through Chemo
I had much the same chemo treatment - 4 x AC but three weeks apart and 12 x Paclitaxel weekly. I worked throughout. I took a day off for the AC but only as long as it took for the Paclitaxel - luckily I worked near day oncology. I was fine, no nausea, fatigue or brain fog. I was working in events - in offices, outdoors, with lots of people and didn’t catch as much as a cold. But - and it’s a big but - what one person experiences, even on what seems the same treatment, can be radically different from another. So it’s wise to have a plan B. You will probably be able to tell, within a couple of weeks or so, what your reaction to each treatment (the two may be very different) is likely to be, plan for some down time if you can. I did of course have other side effects - occasional nose bleeds and lost my taste buds on Paclitaxel, for example. Fatigue or nausea can be exhausting and make working very difficult. Unfortunately it seems you can’t know until you try. Best wishes.31Views3likes1CommentRe: Inoperable
Dear Nightsky I was diagnosed a long time ago - 14 years - and had surgery (a mastectomy) first, then chemo, then herceptin and finally hormonal treatment. But in the intervening time, it has become quite common for treatment to shrink the cancer first, and surgery second. It sounds a bit backwards, but the intention is to reduce the degree of surgery ultimately required. Which may be what is happening in your case. Make a list of things you want to ask your oncologist - or take a trusted friend or relative with you to do so - when you know what is being planned and can discuss it with some knowledge, it actually does help. My oncologist provided me with written information about treatment and medication, which I found really useful to refer back to. There are no silly or irrelevant questions at this point - you have every right to ask why a particular course is being recommended, cancer is confusing enough, it's fair to expect your medical team to shed as much light as they reasonably can! Best wishes for your appointment.70Views1like0CommentsRe: Fear of the unknown
Dear Collette That's a pretty rational feeling - you've got through the surgery but now feel really concerned about what's next. You're not being an ostrich, just honest. Everyone who has been diagnosed with cancer probably has had at least one, if not a lot more, profound wish that it would all go away. And there is an outside chance that's what will happen. No problem with nodes, no problem with margins! But your medical team wants to try and give you the best chance of never having to face this again. So if they have any doubts, or if there are still some lingering problems, they are going to suggest further treatment. That will vary. So will your physical and emotional reactions to those treatments. It's worth remembering that your experience may be entirely different from that of others having apparently the same treatment. Cancer isn't one thing - and treatments vary too, especially in how people react. Make a list of things you want to ask at your appointment, or take a trusted friend or relative with you to do this. Just as with the BCNA, there are no silly questions. Anything you don't know and/or want to know is worth an answer. If your follow up is with your surgeon, ask about a referral to an oncologist, whch is the next step if there is further treatment. It helps to be active in your treatment - your medical team know about how to treat your body, but you know about treating your mind. A good counsellor, even for a short time, can be really helpful in settling your anxiety and planning ahead. Your GP can assist with a referral. Best wishes for your next appointment.19Views2likes1CommentRe: Write off 6 to 12 months?
I was diagnosed just before Christmas - not a problem, we don’t do the 40 people event, but just before my biggest event (event organiser) of the year! We worked around it! As you haven’t got details of treatment and as it’s hard to know ahead of time how you will react, it’s a plan A and B scenario. Your surgeon can answer some questions but others will require an oncologist. Sons will graduate and you will do what you can. Weddings and anniversaries are likely to go ahead too. But a road trip, however desired, might be put in the maybe later category. It may end up being a great end of treatment celebration, but if you don’t need to commit to it now, it might be in the tbc category - only as to timing. Things to ask include optimum timing for treatment - how soon, how long, what order. I found a list of possible treatment side effects useful for reference, but remember you won’t get them all and might get almost none. What treatments require hospital, or day oncology, what will be pills you can take anywhere? It will take some time to get all the information you want, so be as patient as possible. You are on the road to recovery , that’s the main thing. Best wishes.29Views0likes0CommentsRe: Devastated and confused
Dearpjaz Waiting is one of the most difficult times but while you are experiencing shock and disbelief, it may actually help to remember that breast cancer is hardly uncommon (sadly), that treatment has improved over the years and an early diagnosis is a terrific start. It’s also too easy, particularly in the absence of firm details, to imagine one horrible outcome over another. Try as hard as you can to only worry about what you know. The world is full of things that might happen, we would all be paralysed into total inaction if we acted on every possible fear. Keep ‘helpful’ people who want to tell you about their aunt’s illness or the website they found, at bay. They may mean well but can do real harm. Remember that reactions to treatment vary wildly - I had six months of chemo (much more developed cancer) and never as much as felt remotely sick. Ditto fatigue and brain fog. It will help when you know what your treatment is - a breast care nurse may help a lot too, talk to your surgeon or GP. Do whatever it takes to calm your mind and heart in the meantime. Walk in fresh air, breathe deeply, listen to music, whatever. Best wishes.43Views3likes1Comment
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Let's talk: vaginas, menopause & me
PRIVATE GROUP. This group is a safe, supportive space to talk about sexual health and emotional wellbeing during and after breast cancer. We discuss topics like menopause, vaginal dryness, pain during sex, UTIs, and changes in libido, and share ideas and products that may help. Whether you're navigating intimacy with a partner or reconnecting with yourself, you're not alone here. This is a place for open, respectful conversations and shared understanding.Flat Chat - no breast reconstruction
PRIVATE GROUP. This group is a safe space for those considering, actively choosing or not have had a choice to stay flat after a mastectomy. Whether personal decision or one shaped by circumstance, you're invited to connect and share your experience and images with others on a similar path. Information shared is based on personal experience and not intended as medical advice; always consult your healthcare team for guidance. ⚠️CONTENT WARNING⚠️Posts may include images of surgical outcomes, which some may find distressing. If you need support, please contact the BCNA Helpline—we’re here for you.
