Hi im new to group

After a wonderful world cruise in 2008 i was diagnosed with breast cancer. I had 2 x lumpectomies, chemo, radiotherapy and herceptin therapy. My bug bear was being left with ME/cfs following treatment. I cant work and have limited energy, but have a wonderful husband and naughty but loveable springer spaniel. I live in Fife Scotland and love to travel, craft and family life. I recently had a mastectomy a shock at the time thinking oh no not again, but im recovering but need to learn to take it easy and be kind to myself. I would love to hear from anyone not to dwell but to hear all your dreams and ways forward.

16 Replies

  • Hi there Gypsywhyte. I was diagnosed on the 2nd Oct. 2015. I started with one chemo then had a double mastectomy on Jan 5th this year. Following that it was discovered that I had residual cancer and had a further six months of chemo and radiotherapy. Today I have been told that all visible cancer has been removed and that the tumor markers are within the norms at the moment. Due to the fact that I am triple neg a close eye is being kept on me due to the high chance of this cancer returning. I am opting for early retirement as my job comes with too much stress for either mine or my oncologists liking. I have taken up painting, writing for myself, blogging, charity fund raising and all things relaxing. I enjoy walking but end up totally exhausted. Same when I go swimming, but I try all the same. I do get very very tired and was hoping that this would have started reducing, however it does appear to be getting worse. After nearly a year following my mastectomy, I have only just started getting pains in the scarring sites, darting sharp pains. This was explained to me today to be the results of the radiotherapy and the tissue now repairing itself. I have slight lymphodema in my left arm and hand. I suffer joint pains but just try to ignore them. I am on anastrozole as an 'experiment' with calcium tablets. These cause hot flushes and further joint pain. I am being really well cared for both by the hospital, family and friends. This medication will be reviewed again in March. Moving on, I am booking myself in for a mastectomy tattoo and will be having a full chest tattoo early next year. Something I am looking forward to. I wish you well and hope aches and pains reduce for you. Take care and enjoy the run up to Christmas. I am thankfully in a much better position to enjoy Christmas this year than I was last year. Take care and all the best. Lainey66 xx

  • Boy youve been through the mill too. Im glad youve had some positive news and that your taking things easy amd looking forward to your tattoo. Not for me but have seen some works of art. I dont think i will go for reconstruction dont think my body needs anymore trauma especially that i have ME with very little energy. Im being kind to myself like you doing some craft stuff but im own worst enemy wanting the house tidy etc. But im learning ha ha. You keep well and enjoy your holidays. Are you from uk?

  • I am in Ireland 😀

  • Wow yes similar to me cheno mastectomy and now radiotherapy and had perjeta and herceptin but feel energised and very well no side effects everyone say I look 10 years younger would love to talk more I am on a new adventure having found a superfood pure gel that is curing cancer , heart semis ease , Alzheimer's , diabetes , high blood pressure and treating loads of conditions naturally and we should all be taking it as our foods can't fight the free radicals . Honestly I have 4 children single mum work four days a week in health service and since taking this 3 times a day I have a new lease of life eebergised , excited and want to travel the country spreading the word . Would love to chat more and get you to try it . I am now going to focus my career on this product as a preventative wonder superfood and when I am making a bit of money will be providing it for the vulnerable people who really need it but can't afford it . It's exciting , my body feels younger and my skin, hair, nails , digestion amazing like a miracle .

    But if it's not for you then just focus on keeping fit , Pilates great , eating well and avoiding free radicals but if you want me I have found it and it's taken someone 50 years of research to produce and it's all pure xx

  • Hi there glad youve found something that works for you and even better if you can make a job out of it. But for me wont take up your offer. At present im working through foods that work best for my ME which comes with whole load of food intolerances etc but thanks anyway.

  • Hi and welcome, that last reply is a bit strange from Maggie??? Is that someone trying to sell something or what?

    You mention a dog I help in dog rescue locally to where I live, as I am a dog behaviourist, I trained under Jan Fennell as a dog listener ( not like Cesar!!)

    If you have a lovely but a little naughty dog, read her book they will just open your eyes to dog behaviour, I have to the most wonderful dog pointer x springer, about 25 years ago had to naughtiest dog, and can see where I went wrong!!

    Helping dogs is just so rewarding, i help rescues doing home checks and dog assessments, transporting etc, a website covers the country called rescue helpers unite, so if anyone wants to join and help, they can in there area they live in.

    Back to cancer! I had mastectomy 2015 my cancer is ER+ now on letrozole and alendronic acid as I was also diagnosed with osteoporosis when they checked! Good job they did.

    Deb xx

    If you want advice regarding your dog just ask me xx

  • I was off same opinion of you hard sale? But hey ho. It was lovely to hear about your work with animals. Ours is my first dog and she is my shadow love her to bits. She isnt really too bad now, as a pup she was wicked but we channeled her energy doing agility classes. She did well at it too. She is typical spaniel need to keep close watch on her for pinching stuff and always mines ugh! Well best go feed her then will get some peace lol x

  • Hi. Book another holiday when you feel you are able. I have aches and pains and tiredness too. I have recently changed treatments and booked a late winter sun holiday in the canaries in between one treatment finishing and the other one starting. The weather was wonderful and the warmth and sunshine really did me good. My aches and pains reduced and I managed to do more walking which I love but can't manage very far at home. Unfortunately my aches and pains have started returning but not half as bad - I think some of that is I have stopped the treatment causing most of it.

    Try and do things when you feel you are able and rest at other times. You will find a happy medium. Like you I used to be on the go all the time but find I can't do it now. I am 68 so my age comes into it as well

    All the best to you and hope things improve xx

  • Thanks for your best wishes. Good to hear you have some winter sun to look forward too. I would be off in minute but fur baby cant be put in kennels and too many comitments here juat now as mum has dementia and just in respite. I might go beteeen xmas and new year somewhere just to chill. Hope you have a good time when you go. X

  • Hello Gypsywhyte

    Welcome to the Group 💐

    So sorry to hear about your diagnosis & that you've now had to have a Mastectomy.

    I finished my Chemo last November following a Mastectomy in August, as it was TNBC the only additional treatment is 6 monthly Zolendronic Acid Infusions in the hope of preventing any spread to the bones.

    I have an ongoing autoimmune disease, treated with steroids & Methotrexate. The Chemo actually 'dampened' it down for a while but gradually it manifested itself again with major muscle pain & fatigue, but with the reintroduction of Methotrexate & an increase in steroids it's slowly improving but I have to be careful not to overdo things. My knees have also been very badly affected by the Taxol.

    I could not have a reconstruction at the time because of the Meds l was already on & the subsequent risk of not healing well or rejection, my surgeon did a lot of research & took advice from other Consultants so I went with her advice & at the present am 'happy' with the prosthesis, when I'm dressed you'd never know!

    We love cruising too, wow a World Cruise must have been amazing, the longest we've been at sea was 28days Singapore to Sydney & around New Zealand. We had to cancel the Cruise for my 60th last year as the Chemo was in full swing! We've managed two Cruises this year from Southampton to the Canaries so no hassle with flying & l felt the benefit of them both!

    I hope you continue to do well following your surgery & there's always someone here you can talk to!

    Best Wishes 💐

    PS I live on the North Wales Border close to Chester.

  • Thank you for replying. Im glad youve managed your two cruises. How did you manage finding your clothes i suppose the stuff is out there when you look. With my ME ive not enough time to hunt. Got a whole new range of tops but dread the summer t shirts. Deal with that when it comes. Our cruise was 81 days and was fabulous. After treatment in 08 i bought a motorhome and we had an extended trip to europe it was amazing and i still thinl of it everday. Taking the dog was easy too. Nowadays its just uk but still have the van so its a good benefit. Hope you have a good week and your all set for xmas x

  • Hi

    I'm an expert On Line Shopper! Especially when I was on Dexamethasone with Chemo! I've had PMR for 5years so l just can't walk round the shops I'm afraid, Click n Collect or Home Delivery for me!

    The motor home sounds good, then you can do your own thing as & when you feel up to it.

    Pretty sorted for Christmas, planning Menus at the moment, our youngest son & his lovely wife are coming home for Christmas, they live in France, our eldest son will be returning from Honeymoon Part 2 on Christmas Eve so the Newly Weds won't be arriving until 27th.

    So very different from last year as l'd just finished Chemo so I'm looking forward to it, I have a wonderful husband who can cook, I'm on table laying & other decorative tasks! 🎄

    Take Care & don't try to do too much.

    Best Wishes 💐

  • Oh so glad your going to be able to have a good time this xmas and seems like there is going to be loads of family around. I am like you have a great supportive hubby - he likes to cook too but not always successful ha ha Enjoy the time with your family x

  • Hi Gypsywhite I live in Fife too! 2007 mastectomy, chemo, herceptin, tamoxifen now letrozole, alendrioic acid, Adcal-D, and I take glucosamine + cod liver oil capsule daily for joint pain. I still work 4 days a week. Will see if I can private message my contact details to you x

  • Yes that would be lovely. See u were the year before me but glad to see youve got something suitable to take. Im just ten weeks post surgery so still in recovery. Im really fine but just the ME puts a damper on things. Be good if you can pm me x

  • Hi there thank you for your contact i have noted it. Would it be ok to leave things till new year. I need to give myself a bit time (stupidly two weeks after op was trying to look after mum with dementia) so need a wee bit more recovery time. I am hoping her respite is going to lead to longterm care - positive it will. I will get in touch about meeting up and be sure to bring your photos of the new additions to the family. X bye for now

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