Cancer Support thread 86 - Stay Positive

[LemonDrizzle10]

New thread as other one nearly full.

@FangedFrisbee thanks, I love my little patio. I definitely would get a gardener in this year because seeing it all done will cheer you up. Seeing the carnage and the horrors winter frost had done to my poor plants motivated me to spruce mine up. It really tired me out though and made me realise I’ve a long way to go in getting my fitness back.

I’m really sorry you’re having problems with your arm and I hope you get some medication to help with the nerve pain.

The cat photos and stories have really cheered me up today. My cat has taken up her favourite sleeping position on top of the wardrobe so I know she’ll wake me up at some ungodly hour. However, my sleeping is generally much improved after seeing a podcast recommendation on another mumsnet thread. It’s called Nothing much happens- bedtime stories for adults. It works a treat soothing me back to sleep. I’m feeling particularly anxious at the moment waiting for mammogram results. Anyway, that podcast has been a blessing

I’m back from phase One of my sailing adventure. It did me a lot of good and I met my new great nephew. Back for phase Two next weekend.
Interestingly despite going through hell and two cycles of full on cancer treatment in three years I realised that I am still doing better than my younger brothers. They both have heart problems and one has just caught Covid too. I may be battered and bald but I am still healthy and expect to regain my strength and fitness. I suddenly saw my DB1 looking frail and anxious and my heart went out to him. It stopped me being quite so self-centred thinking I am the only one having a tough time.
The really good news is that I am now halfway through the first cycle of Cape and it’s not too bad. I am still queasy on exertion and easily tired but with planning I can get things done and I may even lose some weight.
No cats in our house. Just other people’s roaming round our garden. I’m very good at houseplants though, mine grow enormous!
Sending spring greetings to all. It’s lovely here today. I may get out and plant up some tubs inspired by @Mycatispretty
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Hey. I had a breast cancer dx five ago. Best outcome possible at the time - DCIS, low grade, stage zero, non invasive. Prob not even radiotherapy. I had a lumpectomy and was feeling really positive.

A couple of weeks ago I paid for a private pelvic ultrasound. I’d had period type pains - I’m post menopause, and was concerned. Pelvic scan didn’t show anything however they also did ca125 blood test as part of same package and that came back high.

GP retested ca125. Was 158 on Monday when I had done privately and then 170 on Friday at GPs. GP just rung to say he’s putting me on gynae fast track referral.

On top of this, I saw surgeon who did lumpectomy last week. It was my first appointment after the operation. She said that they’d found a couple of other very small areas of DCIS in breast and she’s concerned there’s more cancer that isn’t getting picked up on. They hadn’t reviewed my case at MDT so came away from appointment without any next steps.

Just so much waiting and ambiguity.

And my job is so shit, and my parents are really ill and I’m the only person who can help. And my left hip is now swollen and all I can think is that it’s all cancer.

Im sorry - thanks for reading.

5 weeks ago for breast cancer dx that should say

That's really rough @lowlythirdremove - especially as you no doubt hoped everything was 'dealt with'.

I can share your pain - although there is no suggestion of more cancer - my wound from surgery last September has still not healed. What should have been a small blip is turning out to be 12 months of shit.

I really hope that you can get the treatment you need quickly - maybe you need to concentrate more on yourself and get in help for your DP. You're dealing with such a lot.

Sorry to hear that @lowlythirdremove - it was named the low odds bin by someone on these threads (can’t remember who) when you’re told one thing and feel reassured and then something else happens that they weren’t expecting - happened to me twice, once they found my original cancer had spread further than they’d thought and then on second opinion a new cancer was found. I’m also in the same position as you with parent care, but you have to put yourself first, tough though it seems. What would they do if you weren’t there?

I’m struggling with anxiety at the moment. I have low iron, though not anaemic, and still have some of the symptoms I had before I was diagnosed. I don’t know whether it’s just taking a long time to pick up again from chemo (six months ago) combined with an almost vegan diet, but I’m worried it could indicate I’ve still got cancer in my body. My CRP levels are low but my white blood cells are also still struggling a bit, though again I did have Covid over Christmas and then another couple of infections. I’m due a scan in a month or so, and neither the GP nor the oncologist is bothered, but I’m failing to put it out of my mind. It’s so miserable. I’m away next week and I will follow up with the GP when I’m back. I’m trying to eat more meat / fish / eggs in the meantime.

Hi All, I'm hoping I can join you on this thread. I've read through the previous pages and you are all so inspiratonal and supportive, just the type of people I need to surround myself with.

A few weeks ago I was diagnosed with Grade 1 DCIS. On Mammogram it was showing as 5cm and on Ultrasound as 3cm, no lymph node involvement was seen on ultrasound. I had to have staging investigations due to size Mammogram showed. I had a CT Scan, Bone Scan and a breast MRI to check size discrepancy. MRI showed cancer to be smaller than Mammogram and CT Scan and Bone Scan thankfully showed no evidence of metastatic disease. I can honestly say the wait for the scans and then the scan results was the most horrendous time I have encountered in my life. I felt so out of control and a complete nervous wreck. My whole body was aching and painful and everywhere I turned cancer seemed to be there, I suppose it was just my heightened awareness of me having cancer and my brain being more attuned to anything cancer related.

I am currently recovering from lumpectomy and sentinel lymph node biopsy. I'm anxiously awaiting my follow-up appointment in breast clinic to see if I need further tissue removed or if the operation removed all the cancer and pre-cancerous cells. Then I believe the plan will be for me to have Radiotherapy as my cancer is ER and PR positive and HER2 Negative. I will then be commenced on medication for at least 5 years, with yearly Mammograms until I am 50.

What I am struggling with now is people telling me to stay strong, stay positive, kick cancers arse, and my absolute favourite, you've got this! I want to bloody scream. How can I deal with people's well-meaning platitiudes without swearing at them?! Other people are frustrating me too as they now think since my operation I am miraculously cured and forget about the further treatment I need to have. I don't think this is something you ever get over is it ladies? I just have to do all I can to be positive and live as healthily as I can. I'm so fearful I will never be able to live without the shadow of cancer looming over me and being continually worried about recurrance.

I am sorry my post is so long and I must apologise if I come across as self-pitying as this wasn't my intention. I know I've vented a lot and I think that is what I needed to do in an environment where I won't be judged for not always being strong and being allowed to be upset if needed. I'm happy to support any of you too if I can and hope my post hasn't been insensitive at all.

Many thanks MLB x

Welcome to the thread @lowlythirdremove . The waiting and uncertainty is the hardest part of cancer treatment. Just hang on to the positives. Your DCIS was non invasive and stage zero. If there is more DCIS you may need another op but they would have found a tumour if there was one. The pelvic scan was normal so the Ca125 must be raised for another reason. It’s not always cancer. Try to keep busy and distracted while you wait. The Calm app helped me. Also try to keep off Google and just stick to NHS and Macmillan sites if you can. It will all be fine! And if not, there is always somebody here to rant to.

@SierraSapphire have a lovely time away and try to forget all about Cancerland. I’m going to be at sea and miss the whole Coronation hoo ha which I am quite pleased about.
Sending strength to all
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Welcome @MyLeftBoobie and sorry you’re here. I think we’ve all had experience of people saying stupid things, I completely lost it with a friend, who said to me “I’m sure it’ll be fine” just before I went for a second opinion where actually they found a second cancer that my first hospital had missed. But in any case, it was already not fine! It’s easy for people for whom things have turned out okay on the whole in their lives to feel positive. She is also somebody who looks at a lot of alternative health stuff, which I do too, but she only sees the promotion of success stories, whereas once you’re in the cancer world you see a whole range of outcomes no matter what people have done. If you’ve already seen the mountain lion link, further up thread, it was the bit about rubbing the lion with kale, or whatever it was that made me laugh! The risk of recurrence for my cancer is more in the first two or three years, so I am feeling anxious at the moment, but I do hope I get to a place where it hasn’t come back and I start to relax a little bit more. I’d probably just say something along the lines of “I don’t think it works like that” when people say stupid things to me, or just leave it, and save your energy for other things! But it is frustrating, because you feel as though you’re not actually being heard and seen as you are.

@MyLeftBoobie you have hit the nail on the head with everything you say! I’m sorry you find yourself here but you will at least find people who get it. I am sick to death of people telling me to stay positive or (though I know they mean well): my aunt/mother/friend’s cousin had breast cancer x years ago and she’s completely fine….Feel free to ask questions or just vent. We’re here for you.

I’m in the hospital car park waiting for my 7th RT treatment. Still 12 more to go. It feels such a slog. On the plus side, beautiful drive over in the early morning sun today.

@Mycatispretty thank you for the podcast recommendation. I tried it last night and it seemed to work. I’ve relied on podcasts to stop me worrying when I wake up at night for ages now but I sometimes get too absorbed in the content. That worked nearly perfectly although I listened to the latest one about a garden and I did find myself worrying about the weeds in mine at one point…

@MyLeftBoobie I'm so with you on the kick cancers arse sentiments, very annoying. And definitely agree with the wait for results being horrific.

I get to find out whether my second tnbc is locally advanced or if it has spread or not today. And what the plan is for with of those. I thought I'd ask on here seeing as you all seem to know so much about it all, is there anything specific I should ask beyond the obvious. Any help would be appreciated - I do if course read up on things, I just can't articulate myself properly

I’ve not told that many people, only the ones that would help me with day to day stuff and be supportive. I’ve not told my Aunt - she’s the sort of person who would be really dramatic and get upset: I just can’t handle that. Just tell who you want, see the people who don’t trot out the corny statements. A neighbour has just started her chemo and is so negative about everything- I’m finding I have to limit my time with her to preserve my mental health.

hi @MyLeftBoobie I feel the same as you regarding the “positivity”. I absolutely hate it. I know it’s well meaning but it stokes the ridiculous amount of rage I have burning inside of me at the best of times. I found it the worst immediately after my last chemo when people were acting like it was all over, asking me how I was going to celebrate! A couple of days after that last chemo all my eyelashes and hair fell out, the last thing I wanted to bloody do is celebrate. Now I have three radiotherapies left and people are like “almost doneeeee!” and I want to scream NO! I WILL NEVER BE DONE! EVER! If I take the Tamoxifen they want me on for 10 years that’ll be a daily reminder, and if I decide not to there will be the heightened fear of recurrence to deal with. I look so ugly I won’t even get changed in front of DH, that’s not going to magically change the day after my last radiotherapy either. Also don’t get me started on the “warrior” shite. I’m not a warrior or anybody’s hero, I went to the doctors about a lump and from that point onwards I did what I was told because I didn’t really have much choice.

I use this thread as a personal Rage Room 😂 it’s actually the only place I feel comfortable to talk about how I feel and everyone has always been very supportive. There’s always room for others in the Rage Room and we have plenty of virtual crockery to smash.

Welcome @MyLeftBoobie to the thread nobody wants to join. It is such a trauma being told you have cancer. I’m still a bit phobic about going into that nasty little clinic room where they keep giving me bad news. Do you have sensible family who let you rant on and reassure you? It’s hard when they get so upset you have to protect them instead of leaning on them. We can book you an hour in our special virtual Rage Room where you can wear protective gear and smash up old crockery and electronic equipment with hammers. I think it’s free currently.
I’m a bit puzzled by what you said. Have you got an Invasive Ductal Carcinoma as well as DCIS? Because DCIS is non invasive and is technically not a cancer but 50 percent progress to cancer. If it’s “just” DCIS, (and I don’t mean that in any way belittling the experience) then the treatment will be very different to having an IDC which has the potential to spread. At your results appointment they should be able to tell you exactly what they have taken out and what the scans all showed. The MDT will have considered everything and come up with a plan for you. The likely plan is what you said, radiotherapy and hormone blockers, unless they have found anything more worrying in the tissue removed. Then they will be weighing up whether to give you chemotherapy or not. In general the ER+ HER2 - cancers are less aggressive than HER2 + or Triple negative BC and they base the decision on an oncotype test which can take weeks to come back. All this is on the Breast Care Now or Macmillan sites if you want to read it up, but keep away from Google or you will freak out.
Here’s wishing you a trouble free recovery from surgery and swift results without delays. We wish!
Sending strength
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@Chocolateismyfavourite thinking of you today and hoping for positive news. I usually take a pen and notebook in and then think of the questions later! 🤦🏻‍♀️

That's what usually happens to me too lol.
I may need the rage room later.
@

Could I just have a 5 minute slot in the rage room? My RT treatment was an hour late as the machines weren't working, and I hadn't taken my laptop as I thought there was no chance of delay as I was first. And then the hospital car park barriers were broken, and no one could get in or out and there were a whole load of stressed and anxious people getting cross with each other and the poor car park attendant. All very trivial in the grand scheme of things but my tolerance for trivial shit is low at the moment.

@TopOfTheCliff - I'm so pleased you got your sailing trip and hope you have a lovely time this weekend too. You are so kind to everyone on here - you deserve a magical few days to refresh your energy levels.

@Chocolateismyfavourite - thinking of you. You will never think of all the right questions at the time, in my experience. If your BCN is any good, a follow up call with her might be the best plan.

@Chocolateismyfavourite thinking of you today and willing the best outcome.

Thanks @dotty2 I was reflecting on the Brave Warrior Schtick. It really used to wind me up. Cancer isn’t a round of Gladiators it’s an illness. Nobody says “ooh fight harder and your arthritis will get better”. But after three years of this wearying process and 29 rounds of chemotherapy, two operations and a dislocated ankle, two courses of radiotherapy and innumerable infusions and vile tablets I am battle hardened. I am astonished that I am still cheerful and upright and looking forward to the future. I have been down to the depths and come back up again several times. I am amazing! If somebody want to acknowledge that I am brave and inspiring that is a nice compliment if meaningless. But I no longer care about my short hair, I am just grateful to have it back again, and if I am a bit fat and unfit compared to my usual Tiggerishness well at least I am back out there enjoying my life. It seems to me that if the treatment is curative and the prognosis is reasonable then it is a matter of enduring whatever they throw at us to get through it. I don’t know how I would feel if I had stage 4 cancer but I suspect my ever optimistic brain would find a way to spin it to make a positive. I hope I don’t find out too soon anyway.
Now today I am frustrated by my stupid brain that doesn’t work properly. I ordered MILs online shopping and forgot to save the final version so now I have to go to Sainsbury’s and pick up all the stuff I meant to add to her basket. I leave doors open, lose keys and forget things and can’t remember names. Nobody said “we can save you from cancer but you will have to give up your career as your brain will be fried” but that’s the truth of it. I’m a dotty old lady now. At least I can’t remember what I was worrying about.
Love to all
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I have an ex colleague who has a small business designing and selling cards. She is married to a dhead who she moans about neverendingly but at the same time enables him so her problems in my mind are within her control really. Anyway, she posts endless affirmation shite on Insta, you are strong, you can handle it, love your journey, I'm coming off of FB cos I can't bear to see other peoples happiness etc etc, you get the drift. Really really fcks me off but I can't unfollow her as its sooooo shite I might miss the next bit of shite to come out of her mouth.
I have been optimistic on my cancer ride so far - its very new for me, diagnosed 20th Apr with IDC, ER+, waiting on HER and MRI results - get them tomorrow - and I've been positive with my early twenties children because I think they are looking to me to set the tone and I don't want them to crumble and think the worst (they lost their Dad to cancer many years ago). But I spoke to my Brother and SIL last weekend and their reaction really shocked me, they were so down about it, telling me I didn't need to be strong, I could show them my true feelings about it😯etc, I was trying to reassure them that BC treatment has come a long way but it made me wonder if I was kidding myself with my positive outlook on it.
I think what I am trying to say is that I think I prefer the positive affirmation stuff over the commiserations because I can angry about the former instead of getting depressed over the latter.

@SierraSapphire I lost it with my poor Husband too whose go to phrase for anything is that it will be fine, so incredibly frustrating isn't it? I have friend who is a little too opinionated and tries to force ideas for alternative therapies on you, I'm sure she will have me eating some type of animal poo before the year is out! I do love a spot of reiki though and will be going for some of that in the coming weeks. I did read the moutain lion link and it made me laugh as well. I can totally understand you feeling more anxious about the chances of recurrance for your cancer over the next couple of years, I'm here if you ever need to vent. It's so true what you said about feeling like not being heard or seen properly. Thank you for your support.

@dotty2 Thank you for understanding where I'm coming from. Ah yes, being told people are fine years and decades later, when all you can focus on sometimes is one day at a time or even one hour at a time. I hope your RT treatment was okay this morning, I'm not sure how much I will need yet but have been warned by two friends that it made them feel fatigued so I hope you don't feel too bad this afternoon.

@Chocolateismyfavourite The cancer sentiments are very annoying and the wait for results is just torturous. I'm thinking of you and your results appointment. I hope for as positive an outcome as possible for you, I'm here if you need to vent later. I'm similar to you when it comes to appointments I can't always express myself properly and return home thinking of several things I should have asked.

@LemonDrizzle10 I too have only informed certain people of my diagnosis for the same reasons as you. I have an Aunt who is very melodramatic and would make my diagnosis all about her so my Mother and I have chosen not to tell her at present. Negativity is so hard to cope with, I agree with limiting your time with your neighbour in order to protect yourself.

@WorryMcGee Oh my goodness rage is a good word to describe how I feel when people are banging on with their silly sayings. I know people are trying to be well-intentioned but their comments come across as dismissive and insensitve at times. Like you say, after finishing chemo the last thing you wanted to do was celebrate, your body is changing and has been through such a gruelling ordeal you don't want to have party. I'm sorry to hear that people are saying the same things about your radiotherapy sessions. As you say ten years of taking Tamoxifen will be a daily reminder of what you have been through and are going through and not taking it will cause a lot of fear and worry about recurrance. People just do not understand how scary it all is. Oh yes, being called a warrior, I feel the same as you, I had pain, found a lump and since that time I have been obeying doctors orders as I had no choice. Thank you for being so supportive when you have so much happening, I really appreciate it and I think I will be in the Rage Room soon.

@TopOfTheCliff Thank you for the warm welcome. I hate the clinic room too and waiting for my Consultant to come in from his adjoining office. I do have sensible family and two wonderful best friends who let me moan and then provide much needed reassurance. The Rage Room sounds ideal for me although I'm fearful once I'm allowed in there I will not want to leave as I have a lot of pent up emotions.
I'm sorry for any confusion caused by my post, I believe I have DCIS, I looked at my clinic letter and it stated I have a grade 1 no special type cancer with intermediate grade ductal carcinoma insitu. ER+ PR+ and HER2-. I remember my Consultant saying the biopsy showed the lump was cancer and that the surrounding tissue showed pre-cancerous cells. My surgery options were lumpectomy or mastectomy and I opted for the lumpectomy and sentinal lymph node biospy. All that you have said about treatment is what I have been advised by my consultant, he said I will have radiotherapy and hormone blockers unless the histology results show anything else to be concerned about and then I may need chemotherapy as well.
Thank you so much for the addtional information, the support and well wishes, I really value it. I have been on the sites you have mentioned and have kept away from Dr Google as it terrifies me. I feel a bit of a fraud being here as my diagnosis does not seem as difficult to manage as some of yours. I hope I can stay and offer support to others x

@SierraSapphire

The risk of recurrence for my cancer is more in the first two or three years, so I am feeling anxious at the moment, but I do hope I get to a place where it hasn’t come back and I start to relax a little bit more

My MOC has a 60 percent recurrence rate in the first 2 years even at my stage 1a and those 2 years were horrendous. A nightmare made all the worse by knowing treatment options are extremely limited although medics can have a stab at it with bowel cancer chemotherapy whilst crossing their fingers behind their back. In fact the treatment options are so few and the outcome so bleak that I doubt I’d have any treatment. What I would more than likely get out of it just wouldn’t be worth being so unwell. I think I would want quality of life for a shorter time rather than an extra few months after 6 months of chemotherapy.

Thankfully I’m now 7 months into year 3 and I’m like a different woman. My chances of reoccurrence are down to 10 percent and there are days I can believe the chances of it coming back are very low. I really would have to be very unlucky for it to come back but one thing I’ve learned is that a stage 1a cancer diagnosis is as real and as awful as any other diagnosis and I should never have been apologizing to people in the horrible world of cancer for ‘only having stage 1a’ but neither should I have been thinking I’d dodged some kind of cancer bullet either with my stage 1a.

I’m now on to annual check ups, my peace of mind and heart is huge and I hope the same for you.

Hiya everyone. Well it's in my liver. They're doing tests on my biopsy sample, and if it responds, I'm going to be having a new immuno therapy drug that's apparently only been used the last three months, if not theres other chemo they can give me. Obviously it's stage four.

If anyone can give me any...hope or information that they know, because they know or have experienced I'd appreciate it very much.

I’m very sorry to hear that @Chocolateismyfavourite That’s so fucking unfair. I don’t have any real insight so am offering swearing instead. Thinking of you. But ‘good’ that there is a new treatment option. (Good obviously not quite the right word in this context.)

It is unfair. Don't worry, I know what you mean, and yes it's good there's a new option. Thank you..xxx