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Breast Cancer Haven
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Hello ...how is everyone ?

Morning everyone .....i was just taking a look on here to see how everyone is doing ....My last chemo was 10 months ago now. I have to admit it feels like something that didn't happen to me, although i went to the pub a few weeks ago and had a complete melt down ....Laughing hysterically and then crying like a baby ...i don't think it was all about what i had been through ...i think it was losing my mum before i got diagnosed as well as that was equally a massive shock ..I am also not good at being intimate with my husband ..I really don't understand i had a lumpectomy so it shouldn't make a huge difference..anyone else been through this ? ...be nice to hear from you all ....lots of love Jane xxxx

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Hi Jane, i finished my chemo, radiotherapy and had my double mastectomy in 2016 and yes... I still have 'moments' . I lost my Father on the 1st of May this year which was so utterly unexpected. Intemacy has gone out of the window for me. I suffer bad joint pain, terrible pains in my feet and a constant pins and needles/numbness in hands, fingers and toes. However, despite this and for my own sanity, I try (and it is not always easy) to look on the brighter side of life. I go to meditation, I paint, read, write, I travel as much as I can, even if it is hopping in the car and going to parts of this country that I havent been to before. I walk the beaches, collect stones. I visit antique shops. I go to the museums and I am tracing the family tree. I have to keep busy or my over active imagination takes over and has me thinking that every ache and pain is the cancer returning. I still have to nap in the day as fatigue is a nightmare. I met a number of lovely ladies who had similar diagnosises as I have, sadly 3 have since passed as their cancers returned in their brains, so every headache has me wanting a brain scan. Two lived locally to me and one I met on this site, we met up an hit it off. Do you remember BernieM56? (M59?) Well it is nearly a year since she died. So I live my life as fully as I can, I have learned to shed fear through meditation and to do as much as I can as none of us know what is around the corner. Right now,, Despite the aches and pains I consider myself very lucky to be here. I hope to be here for a lot longer too. Take care and look on the bright side. Sending hugs and positivity Lainey66 xx

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Hi Lainey

When you lose those you love and cancer returns for those around you its particularly hard to keep the demon thoughts out of your head. The fear never really goes no matter how well you are doing. You have had a particularly hard time and you have been a really strong support for lots of us on here with your encouraging comments and up beat messages. I hope you continue to keep well and enjoy life. Love Caroline xx

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Thank you Caroline, yes it can be very hard. Thank you for your lively words and support. Love Lainey xxx

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Dear Lainey

Even now you are inspiring. Thank you for so much, your honesty, your experiences, most especially your continued and brilliant support. I am sad for everyone that has lost to cancer. I really do wish you were in better health and less pain.

Sending love and hugs xxxxxxx

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Thank you Debster2016, you have all been a huge support and inspiration to me for the past 3 years. We are all travelling a tough road, yes we have family and friends but none who understand like you all do on here.

Thank you so much

Sending love and hugs too xxxx

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Hello Lainey ..Im so sorry to hear your sad news ....its horrible to lose a parent ...I lost my mum and also my family at the same time due to family rifts ...long story ...but you know ...your dad got to see what a brave loving daughter he has ....and that is something to stand with pride ....you are a trouper and such a support and inspiration to many people ...and I know your friends whom also have passed at least had your love and support ....life can be cruel but also its our duty to make the most out of every single day ...for those who dont make it ....lots of love Jane xxxx

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Hello Lainey

How are you doing? You sound amazing as always despite everything.

Did you get your tattoo done?

We’ve moved house & now have a Baby Granddaughter who is four n half months old, she is a true delight.

I now have NAFLD - Fatty Liver Disease (not caused by alcohol) 🥂 it’s pretty severe & it was caused by long term Steroids for my PMR so that’s a bit of a blow!

But we carry on, don’t we? I have the fatigue cause by my Adrenal Glands not working so well, actually not at all really, again due to the Steroids & the cure, more Steroids!

Good to hear you’re keeping busy, you’re an inspiration to us all.

I’m glad Jane wrote the post & chivvied us all up into saying Hello & touching base.

Take Care 🌺

Love

Angela xx

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Hi Jane

I know what you mean when you say it feels like it happened to someone else. Its all a bit surreal. I am a year post the completion of treatment and at annual anniversaries of the sillest things - last radiotherapy, last outing of the wig etc - I look back with disbelief that it did all happen to me. I am very lucky in being so well, in fact I start work again this week after a 2 year break. Despite that I still think about cancer a lot and especially about those around me who are still going through treatment. I dont think you are ever the same person after cancer. I too had a lumpectomy and the scars are nothing to what many people go through, I still feel awkward for my husband to touch me. I am happy that your treatment is behind you and you are doing well. Keep strong Caroline xx

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Keep looking forward Caroline ...soon this will be a distant memory ...I am such a sap ...i find myself crying with the carols Im hearing at the mo and the xmas ads i have to leave the room lol ....xxxx

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Hi Jane

This site used to be pretty busy but seems to have tailed off, l think there was a lot of us diagnosed around the same time.

I’ve had my 3rd annual follow up & mammogram on the other breast but l find it odd as l had a Mastectomy & think shouldn’t this side be scanned or something?

My BC was in the middle of my journey with PMR (an auto immune disease) so that’s continuing; the Chemo affected by knees badly so l have terrible issues going downstairs! In August l had a phone call from the Rheumatology Team to stop my Meds as it was affecting my Liver & unfortunately l now have serious Fatty Liver Disease (NAFLD) caused by the drugs!........

I didn’t have a meltdown as such but l was out with my ‘friend’ who dropped me completely during the Cancer & Chemotherapy (as is common) but she told me about her other friend who had Breast Cancer & she was going to take her for her daily Radiotherapy, well l was poleaxed to say the least. It really, really upset me & set off a chain reaction which eventually brought the whole trauma of the past few years out! Luckily for me l had a new GP who picked up on it straight away & prescribed me an antidepressant, which l was reluctant to take but did & to be honest it was just what l needed.

My Oncologist told me l’d never be the same after the Chemotherapy & he was right but there’s a ‘New Me’ l’m a bit devastated by this latest diagnosis but it is what it is!

We’ve moved house & now have a beautiful Granddaughter, she’s four months old & gives me a purpose in life, they are coming for lunch today so l can have some Nana Time!

Sorry, l really didn’t mean this to be about me.

We’ve all been through a lot & losing your Mum is very difficult but combined with the Cancer makes it exceptionally difficult.

I’m keeping busy (at my pace) with the new house & try to see our Granddaughter as much as possible. I’m now doing things at my pace as the steroids have affected my Adrenal System too so l get terrible fatigue! But we’re here, we made it through & many of us don’t, so really that’s what l think about & it’s Onward & Upward!

Very Best Wishes Jane 🌺

Love Angela xx

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Hello Mrs Nails, Angela

You too have been so lovely and supportive, it is lovely to hear you are taking life at your pace and enjoying your granddaughter.

Wishing you better health too.

Love Debbie xxxxx

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Oh how lovely a granddaughter ....she will keep you busy ....enjoy and spoil her xxxx

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Hi Ladies

Nice to read updates! I'm 3 years on from chemo now, and I have my 3rd annual mammogram in December, always a nail biting time!

I'm 6 months on from a total hysterectomy and ovaries removed due to tamoxifen causing mischief! I'm nearly 38 and menopause is in full swing, bone aches, hot flashes, restless nights and tamoxifen at moment is giving me rib pain and upset tummy, 8 more years to go of it though.

Sorry to read about those that have lost someone.

Take care all x

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Keep going ...and try to enjoy your days ...lovely to hear from you xxx

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Hello Jane

I agree with so much of what the ladies say above and am grateful to them all while I was going through some pretty hard times during treatment early last year.

I too have gone back to work a couple of months ago after nearly 2 years and I had to fight for it taking my employer to court. I am both lucky and relieved to be well enough to do so because it has really made me feel so much better despite it being 2 years after my initial diagnosis - Oct 2016 - and me feeling so much better in many ways after treatment ended over a year ago June 2017. I find work gives me such a sense of purpose and it really has closed the cancer chapter of my life.

But........yes there are still anniversaries and yes I definitely get caught out by a memory suddenly hitting me out of the blue for no apparent reason other than that’s the way my thoughts were going and I wasn’t ready for the memory and I still cry.

I don’t feel that cancer has changed me in a big way but one thing I do now that I didn’t before so much is tell my family I love them much more often, every time we speak.

I do consider myself lucky every day and each evening my husband and I chink glasses and celebrate the day just gone and say here’s to tomorrow.

Thank you for all of your posts too Jane, I was pleased to be able to provide support when I could after having received so much help when I needed it.

Sending lots of love and hugs xxxxxxxx

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Really lovely to hear from you all ...I wasn't expecting such a massoooove response ....love and respect to you all ..and may i wish you all ...a very Happy Christmas ...and a fabulous New Year ...lots of love xxx

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All famiar names here hi, second mammo due december. Returned to artcourse with Edinburgh Botanical Gardens but can do little now. Life turned, hubbys turn, he just had a hip operation, meds given upset stomach like the chemo injections did me. Some days I think its all too much, I can bearly look after me and now must force myself to do everything. I still feel tired and walking has its limits as arthritus in feet that wasnt there before chemo. Everything seems a challenge because he was the driver and being located a mile from everything too, it can be hard. Hair is more 90 year old, white curly thinning and untidy, skin in places like sandpaper with itchy scar moments in the evenings. Steroids did so much damage to my health diabetic wise and the extra meds also have their side effects. But we pick up, struggle on and do what we can. Once awake, stay awake until bedtime but many rests, no stamina. Lost the cat, poor thing was a bit neglected at the end, neither of us tolerating the extra weight on our bones. It was 17! The children take in turns to help me with the shopping, which hubby always did. At least I can still kneel and bend, but I never imagined 65 like this, 80 yes. Really could do with help to clean bathroom, and hovering so house is still waiting spring clean. I would like energy back but I guess its about as good as it gets. I feel more housebound than ever, art keeps me in a bubble but for three weeks now, that bubble hasnt been there. I have to be the strong one yet I fail. Tried the leaf clearance on the footpath, afraid I or hubby would slip if it turned cold but 15 mins in, back had enough. Neighbour finished job at weekend!

We tick over, for a short while joined a Triple negative group on facebook...then deleted. Negativity seeped in, its better to forget, scary place. Dont visit. We are safer here. In a way its the most supportive group I found long may it continue for the newbies that have to go through it.

We may appear silent but were happy to support. Long may we remain cancer free, we had that experience, learnt from it, and need new positive more interesting experiences now in our survival.

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Dear Berylynn, it sounds very tough for you at the moment and I am sad to hear that. Its good that you have support from family and neighbours. You say you could do with some help with housework. I am not sure what you have tried or what your circumstances are like. When I was at my weakest we got a cleaner in. It doesnt have to cost the earth. Even an hour once a fortnight made a huge difference to how I felt. I knew someone was coming to scoot round with the hoover and wash over the bathroom so I didnt feel so pressured.

Hip ops seem to be amazing, so hopefully in a couple of months hubby will be much more mobile and pain free. He may feel stronger to help a bit more around the house.

Macmillan might be able to help, they have a buddy scheme which might be able to help you for a couple of months whilst things are particularly tough for you. Good luck.

I hope you feel strong enough to do a bit of drawing over the next few weeks, even a small sketch. It sounds as if art has been very helpful in the past and hopefully it can be so again. Hugs xx

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At least the house is small to clean but I really think if it was with more space it would be easier than all the stretching. Have we ever known a tidy artist or a student?...we are too busy chasing deadlines in our heads. Nice to hear from others and I wish us all a healthy lifetime ahead. Now I might be difficult but things change.

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Oh Berylynn

I’m so sorry to read life is so challenging for you at the moment, as you say you never imagined this at 65

I do hope your husband improves soon, just a thought perhaps you could do the bulk of your food shopping online & then that wouldn’t be such a trial, then just maybe shop from the fresh things, fruit, veg & meat.

Maybe you could consider one of the House Cleaning Services just a one off to give everywhere a Pre Christmas Clean & that would help lift your spirits.

I also had TBNC & gave that Website a Wide Birth as you say much more helpful & friendly on here.

I can empathise with you the the Steroids & the hair as I’m still sporting a wig three years after finishing Chemo, it’ll grow but it’s so thin at the front, Steroids & Methotrexate but l love my wig(s) & never have a bad hair day any more 🧑🏻

I think Jackearls1000 Post was good as it’s put us all back in touch & really l think the support is just as important further along the road.

Take Good Care

Don’t forget to post if you need a little support.

Best Wishes 🌺

MrsN x

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Just returned from the round trip to town, feet behaved themselves this time, bank stuff sorted for November. All this walking must be helping, last week was challenging as I stubbed my toes due to patient sitting behind door. Lost a nail too after all the hard work to keep them during treatment.

Online shopping...Sainsburys website I dont like, but Waitrose seems laid out better... its the emergency step but so far kids help. I am thankful for the lifts even if its empty shelf tour late Saturday and I come back with strange replacements. On the upside we do have a wedding to plan for in 2019, my son got engaged recently, hopefully Dad will be without sticks by then unless his returned for the knee. I doubt he will be in a hurry for another dose of bloodthinners. I am sketching dendrobiums, flowers, buds, canes, roots, half cut flowers and still need to make a composition. Since I ended my Chemo I have finished two really large complex botanical studies that I never imagined I could do but I am relieved there are no near deadlines for year three. Exhibition due a year from now in Edinburgh, 5 paintings! Others did really well.

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oh im so sorry life is such a challenge ....is there no help out there for you? ....i dont know where you live but i would be happy to come and help ....maybe a chat with your nurse or macmillan nurse might put you in the right direction ....dont suffer in silence ...xxxxx

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Hi Debbie

How’s things? Good to hear from you 💕 l see you’re back at work, good for you & hope you’re enjoying it.

Terry & l are living the life of The Retirees, which we are both enjoying, the new house has kept us busy & Baby Charlotte is a delight!!!

Take Care & Keep In Touch

Angela xx

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I know exactly what you mean! I feel like I mostly suppress emotions, so it's hard to know what is triggering the events when I feel down. Most of the time I feel strong and once and a while I lose it.

I am so sorry you had to deal with a loss like that at the same time you had to get treatment! Must have given you another perspective.

I haven't had issues with intimacy, but I know the hormone-related medications we take after (e.g. Tamoxifen) can have an impact, might be worth looking into?

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