Giving Back

[stardust1965]

Hello everyone,

I’ve been regularly visiting this board for about 18 months and received some wonderful responses when I first posted. I wasn’t in the best place back then trying to cope with my MBC de novo diagnosis so I want to apologise to those lovely ladies who I never responded to. I felt bad about that (must be my Catholic upbringing).

From the shadows it has been amazing to read the posts here and it has made my MBC journey that bit easier. Thank you.

It is now 20 months since my diagnosis and like most of you I have had my ups and downs.

Yesterday I received my latest scan results. It had been six months since my last scans due to Covid delays and I have been on 75mg Ibrance (due to low neutrophils) during that time, so I was worried. Thankfully they came back stable. I am relieved and happy with that and so today is a good day!

I didn’t know what to expect 20 months ago. I was reeling from my diagnosis and my future looked bleak.

In those 20 months my back pain has been treated, I got a (mad) cat, visited California, spent a month in beautiful New Zealand and been supported by lovely friends. I’ve also learnt to navigate the NHS system and become my own advocate. I have just spent the last four months shielding at home with my husband (and best friend) and two of my three lovely daughters. This has given us unexpected precious time together. I have been able to enjoy gardening again and got myself a bike. I feel well and am really appreciating my life.

I could not have imagined any of this on that crisp, clear day back in November 2018 when my life turned upside down. I am not delusional, I have just learnt to enjoy every moment and love life, especially on the good days.

I hope this gives hope to the newly diagnosed women that find them self visiting this amazingly supportive board.

I’m now off to get my Zometa infusion. Ho hum 😁

[MyMiracle13]

This is a lovely post and thank you for sharing, I’m happy to hear you have stable results. We all have been in that dark place but all of us have also found peace and healing after. Good wishes for more stable scans.

[stardust1965 in reply to MyMiracle13]

Thank you, I was long overdue in posting my thanks to this board.

I wish you all the best with your treatment and the changes you are currently going through.

[JoolzD]

Lovely to read this very heartening story. I am just about ten months down the line and when I was first diagnosed thought it was a very short death sentence. But I am really encouraged by your story, along with some good scan results myself. Thank goodness for Ibrance. We are lucky to have these modern drugs.

Good luck with your next steps.

[stardust1965 in reply to JoolzD]

Thank you for your kind words.

I felt the same and was ignorant of the advancement in drugs like Ibrance. It was only approved in the UK about a year before I was diagnosed. I think there is a lot to be done in educating people on the fairly recent advancements in treatment for MBC. Having said that I do now quickly swipe up on my FB page of other people’s stories constantly told by cancer charities. I don’t need to read them.

May your good scan results continue too.

[JoolzD in reply to stardust1965]

I am the same. I am not interested in what Facebook posts say about cancer. It is so often depressing or just nonsense. We can do without that in our lives.

[Hidden]

Hi,

Thanks for your encouraging post! I'm pleased to hear about your stable scan results. That's always a relief, isn't it? You sound like you have turned a corner and are embracing the support of family and friends. That can make such a difference.

My treatment is not quite the same as yours (letrozole, zoladex and zometa every 12 weeks) but it is working to keep me stable. I was also diagnosed in 2018, but earlier in the year, so I have already passed my two year point.

I hope your zometa infusion went well!

Take care,

Sophie

[stardust1965 in reply to Hidden]

Sophie

Thank you for your reply. Yes, it was a relief especially after a three week wait after having the scan. I think you are right in saying I have turned a corner. I’ve never though of it like that. When I don’t know how many good days are ahead I just have to enjoy them while I can. Having a positive attitude is definitely good for our health.

You must be content with being stable beyond your two year milestone.

My Zometa Infusion was fine and is done in a cold zone hospital (avoiding my usual hospital that is treating Covid patients). I had my scan at my usual hospital and asked how many Covid patients they were treating and was told it was 33. They use the same department but different scanners so that’s not too bad. As I've only been going out to hospital appointment over the last 4 months I was a little nervous but it had been six months since my last scans so just went for it. My first trip out was to have a Covid test before I could have my Zometa infusion last month. It was negative! 😁

Take care.

[Hidden in reply to stardust1965]

Hi,

You’re welcome. Waiting three weeks for your scan results must have been hard. Two weeks is bad enough! Although I was able to get the last one down to a week.

I agree that a positive attitude (and plenty of laughter) helps a lot with this disease.

While I am happy to have had eight consecutive stable scan results since starting treatment I want more than that. The breast tumour is almost gone and I feel very well. But I want to go even further.

I’m glad your infusion went well and that you tested negative for covid-19. It must have been a bit daunting going out after so long. I can’t imagine how hard it must be for you and others in that situation having to stay indoors . I have carried on working through lockdown, which has been great in some ways. But I’m off work this week and so is my husband. We’ve been enjoying an anniversary staycation, rather than risk going away for the occasion.

Take care,

Sophie

[stardust1965 in reply to Hidden]

Sophie

I hope you have many more good scan results 🤞

Shielding hasn’t been too bad. My garden looks much improved and it’s been good for our family.

Enjoy your staycation. I think that is sensible. We are not planning a holiday this summer. I did have the most wonderful trip to NZ in March before the world turned to custard. That will keep me going for a while 😁

[Hidden in reply to stardust1965]

Thank you!

It sounds like there have been some benefits to shielding for you. Getting out in the garden is so satisfying.

I've been enjoying my week off so far. I think I'll stay home on Friday though, as it's going to be hot again then! I bet the trip to New Zealand was amazing. You can reminisce over those wonderful memories. My husband and I enjoyed our trip to Iceland in January, so I'm glad we got to go again before lockdown. I won't be flying anywhere again anytime soon.

Sophie

[stardust1965 in reply to Hidden]

I’ve never been to Iceland but it is on my travel list.

This time last year we were on a four day canal boat trip on the Fens which is in your part of the world. It was the most amazing trip with so much wildlife. We saw big blue dragonflies, a barn owl, all sorts of water fowl, horses and a few cows grazing at the waters edge. On our last evening even an otter made an appearance. We half expected David Attenborough to appear round each bend of the canal! It was the hottest day of the year in Cambridge and we loved being on the water with the gentle breeze. I can highly recommend it. There are some amazing places to holiday in the UK so for a year or two I don’t know why people aren’t content to explore here, except of course that the good weather is never guaranteed!!

[Hidden in reply to stardust1965]

I'm glad you liked the Fens and had a good time on your canal boat holiday. We do have lots of great wildlife around here! I love it. If you're ever in my neck of the woods again let me know and we can meet up. I agree that we have plenty of great places to explore in the UK. We've been taking day trips this week, as it was our wedding anniversary on Monday. Tomorrow we're heading into Cambridge. I don't think I'll want to do anything on Friday, as it's supposed to get back up into the 30s again.

Sophie

[Teddielottie in reply to Hidden]

Happy Anniversary week ! x 💐

[Hidden in reply to Teddielottie]

Thank you, Teddie! We have had a lovely time so far this week. We've combined a bit of what we both like such as foraging, eating out, and visiting different places, so it's been fun. My husband is a keen golfer. I went with him on Tuesday and drove the golf cart around and tried to learn the rules of the game! We're off to Cambridge today. Hopefully it won't be too busy.

Sophie x

[stardust1965 in reply to Hidden]

It was our 29th wedding anniversary the Monday before (27 July)! It was very low key but we plan on celebrating next year for our 30th.

I don’t have any plans to visit anywhere right now but it would be lovely to meet if I do make it back to your area.

We loved the Fens but I don’t think we saw Cambridge at its best as it seemed to be a graduation weekend and it was so over crowded, and hot. My husband is an Oxford graduate so perhaps we were biased!

Enjoy the rest of your week off with your husband. x

[Hidden in reply to stardust1965]

Congratulations on your 29th wedding anniversary! We celebrated our 18th on 3rd August. Like you, our celebration was pretty low key, although we had a lovely cake made. We have taken this week off as our anniversary staycation, as we would normally go away for the occasion. A meet-up would be lovely if it works out.

Cambridge can get very busy and overcrowded during graduations and the summertime, as it's peak tourist season. But there is also another side to it. It's a bustling city, but you still have the parks (Parker's Piece, Midsummer Common etc) where you can take it easy, sit and relax and watch the world go by. Or just stop by the River Cam for lunch in one of the pubs, punting, or just enjoying the views. There are some really quiet, lovely parts of the city where you feel like you are out in the country, as there are cows by the River Cam! You're entitled to a little bias though. I love Cambridge as I studied in the city so have fond memories of living and studying there when I was younger.

Take care,

Sophie x

[stardust1965 in reply to Hidden]

Thank you and congratulations on your 18th anniversary!

Thanks for the local tips on Cambridge. I am a country girl at heart even though I’ve spent most of my adult life in big cities, so I much prefer avoiding crowds and finding those quiet spots you mention.

I envy you your beautiful and quiet location, especially in these Covid times.

Enjoy the rest of your week off. 😊

[Hidden in reply to stardust1965]

Thank you!

We just got back from Cambridge. It wasn't as busy as you would expect this time of year. The last time I was there was in December during the annual winter fair on Mill Road. I think people are staying away due to the pandemic. Everywhere you go now you have to wear a mask, including the buses, and shops can turn you away if you are not wearing a face covering. But having said that, we saw lots of people at Christ's Pieces (a lovely park near the bus station on Drummer Street). So it's basically the same rules in the city as everywhere else. I'm a country girl at heart too, but Cambridge is a very accessible city, with plenty of parks, and it doesn't have that large city feel like London.

Sophie ☺️

[hdhonda]

Hello,

Glad to hear that you are doing good. Drop in more often and let us know how you are doing. Thanks for the update. Blessings, Hannah

[stardust1965 in reply to hdhonda]

Hannah

Thank you, and I will. We are in for a bit of a heatwave in the South East of England over the next week so I will slow down then. I’ve been enjoying some gardening today.

Take care

[pollymacchili]

Thank you for your post and your great example of power of positive, but realistic thinking. I too was dx with MBC in November of 2018 and am currently “ doing well”. Am on a 3 month cycle of scans , last 2 were good news! Also on a “vacation“ til October from Kisqali which caused a rash and So now just Letrasol. Since we are date mates on this unexpected journey, I am happy to follow in your footsteps and copy your attitude. This site is full of positive thinkers with positive stories! Thank you ALL, each single one of you for helping us remember to actually do some living every day....fully as we can, with hope from each other’s stories.

[stardust1965 in reply to pollymacchili]

Hi pollymacchili

Thank you for your lovely response and for sharing your journey so far. Doing well and good scans is a reason to celebrate.

I like the term “date mates”!😁

Take care

[Teddielottie]

So happy for you with your most recent stable scan , and especially since you had dropped to 75mg Ibrance , due to low neutrophyls. I’m glad you are enjoying life and have such a positive attitude . Keep it up ! Thanks for posting ! x

[stardust1965 in reply to Teddielottie]

Teddielottie

Thank you. My neutrophil count scraped in at 1 this month so I’m just hanging in there! 😊 My oncologist says I won’t need another scan for 6 months. I’m not sure how I feel about that as they were always about every 3-4 months before Covid. I was told that if I feel unwell or my markers start rising I could have one earlier 🤔

I’ve spent the day gardening before the hot weather arrives tomorrow and hope you are managing to enjoy your allotment. 😁 🌷

[Teddielottie in reply to stardust1965]

I too am on 6 monthly scans (the last was actually 8 months !) due to being stable and having no pain , for some time now , but I know how you feel , as I do sometimes wonder whether something could be missed if scans are less frequent ? But I put my trust in my onc and hope all stays good .

I have also been busy gardening , both at home, and also looking after my mum’s higher maintenance garden (while she stays with my brother during the pandemic), as well as helping out redecorating/ refurbishing her home .Enjoy the good weather ! x 😎

[stardust1965 in reply to Teddielottie]

It’s reassuring to know I’m not the only one on six-monthly scans.

Your mother is lucky to have you nearby and I am sure she will be so grateful when she eventually returns home. Mine is a low maintenance garden which was neglected so it’s been fun growing herbs, a few vegetables and my favourite sweet pea flowers which smell gorgeous and I can cut fresh ones every day. Sometimes it’s the small things that give us the most pleasure. They also remind me of my mum (she was an amazing gardener) who passed away the same year my youngest was born. In fact it is her 18th anniversary today.

Happy gardening.

[Teddielottie in reply to stardust1965]

Fond memories... my dad , who passed away nearly 5 years ago ( at 88 ) was a keen gardener and their garden remains well stocked throughout the seasons . He used to grow sweet peas for me too from seeds in his greenhouse and I love their scent too. Mum still has annuals like dahlias too .She lives a 40 minute car journey away but it’s not too far to visit . She is in her mid eighties but still normally quite independent , so the house refurb ( all now designed with easy living in mind ) will be lovely for her to return to . It has kept us occupied over the past four months too , as well as my newfound e- bike hobby ! x

[stardust1965 in reply to Teddielottie]

Wow that’s amazing that you have achieved all that during lockdown! I potter around and get tired easily but it’s hard to tell if it’s the Ibrance or the gardening! I’m 55 so I’ll blame the meds. My father in law was fiercely independent and living in his own home until he passed away last year at 91. My sister in law lived very near him so it made it possible. Gardening, and DIY, can be so therapeutic. I hope your mother loves the refurb on her return.

[Teddielottie in reply to stardust1965]

It’s probably a mix of Ibrance , manual work and our age ! Most days I am fine and can do quite a bit , but I do pace myself and rest when my body tells me to ! ... I do have days in my cycle when I’m more tired so I just take it easy for a few hours when lethargy hits , but it is unpredictable . I am also always careful not to overdo things like lifting anything heavy on my right side . I am right handed and had a right mastectomy / axillary clearance , so don’t want to risk lymphodema .

But I count myself ‘ lucky ‘ to be able to do what I currently do ,and I am not in pain . I wish this for all the ladies on here as quality of life is so important for us all . x

[stardust1965 in reply to Teddielottie]

I totally agree with you and could have written that myself, except for the right mastectomy. Nothing was ever found in my breasts even with a mammogram taken 7 weeks before my MBC diagnosis.

I wish the same pain free future for us all.

[Iwasborntodothis]

This is lovely - thank you!

[mariootsi]

Celebrate your stable scan with your family around you. Hold them close.