Cancer Support Thread 89 - the best thread that no one wants to be on.

[LemonDrizzle10]

New page

I didn't have any pain at all from radio and mastectomy was about a weeks pain, and full lymph node clearance maybe 2 weeks and nothing since though maybe I was lucky with that. I also suspect I can't feel pain that much as never felt any of the cannulas much and one nurse said you should be screaming in pain with that when one went a bit wrong and I had hardly felt it.

@TopOfTheCliff I also would like to hear the painting story!

After the events of this year I’ve decided to just bring all plans forward. I’ve always said to other people to not put anything off until they retire, if you want to do it just do it - don’t wait. I need to listen to my own advice. This is why DD and I are going on a horse riding holiday next year.

Saw my oncologist yesterday- said it was ok to dye my hair now 🎉. Did a patch test yesterday and my hair is now just brown: rather than white, brown, grey and blond!

@dotty2 I have a plan for the arm and shoulder pain which I have on both sides. Once I’ve had the dreaded bone scan and assuming it is clear of cancer I shall book in with my favourite PT and get my shoulder sorted. I need to be able to lift light weights so I think with his help with ultrasound and laser treatment we can get it moving again. Then yoga and Pilates is good for stretching out the poor scarred pec muscles. I take amitriptyline at night for the nerve pain which helps me sleep.
I will tell the story about the £7m painting but altered to protect the privacy of the ExH.

On the subject of random scans, my liver MRI has come back showing a few lesions and a liver adenoma which are apparently fairly rare! All benign they think and nothing that needs treating so just another scan in six months to see what's changed.

I'm not sure it's reassuring or not sometimes! Logically I suppose at least they'll catch anything earlier than they might have done but gosh it doesn't half add to the stress.

I have a bone density scan booked in for Oct, but I also have my post treatment pet in Oct (no date yet) so need to check because I think there are rules as to how close to other scans you can have them...

@ClashCityRocker I had to cancel my bone density as it couldn’t be within 6 weeks of a CT (after). I’m now awaiting a PET to confirm recurrence so if you find out how long it has to be after a PET before a DXA let me know!

Hello all, I fell off the thread. I also feel, when reading everyone's stories and also those of friends, that I really am very lucky in that this is only stage 1 and double positive.

I've had surgery to remove one cancer and one suspicious area and a symmetrical re do on both sides.

I'm also coming off hrt in preparation for tamoxifen.

I've been feeling so strong, capable, positive and fortunate. That all came crashing down two week post op, (but also coincided with a period.) I've the results app next week - all being well it's tamoxifen and radio therapy.

I'm arranging some counselling (though also suspect it's the hormone drop) Macmillian said today it's common for an emotional slump post treatment. Is this true?

I did a couple of weeks of terror when first diagnosed but found good supportive info and felt capable.

I don't think it helps that the whole psych thing surrounding breasts for women triggered some deeply personal emotional shit from the past.

Nor that DH cannot support me emotionally, though is good practically. And we've young children so everything is busy busy and stretched.

Ikea I think people who cope well in treatment can crash at the end, maybe they keep strong through treatment and then all the emotion appears. I was a nervous wreck in treatment so I improved a lot when treatment was over, I was far more scared of treatment than cancer. Hope you can get some good support.

Maybe.

I suppose I felt I had a practical plan and was glad to see the back of the cancer. I was lucky to be able to have time before to focus on some weight training and I was feeling good.

It has been a week without any hrt though now so that could be it too. And lack of exercise, though I've been increasing walking a lot with the dog.

It was also specifically seeing my "new breasts" which triggered something. Though they're looking a lot better now.

The only treatment I've had is surgery; I'm terrified of tamoxifen and naive about radio therapy. Though yet to have the appt to discuss everything.

I feel I need to be mentally and physically ready for both and I'm just not right now.

I found radio pretty easy, was just lying on a bed like thing and it whirrs round you for 5 minutes then its over. The weird thing about it was they seemed to expect you to be topless infront of the young male staff. I didn't get any side effects at all. Felt slightly sick but think that was nerves. Tamoxifen I've been on for over a year, I'ld prefer not to have to take it but got a few symptoms when I first started but now not much - its not great for teeth and I get odd ache and odd hot flush but nothing much. Can't sleep on it. I think a lot of it is menopause though. And if you really don't get on they can switch meds. It was chemo that made me super anxious and gave me masses of side effects.

Best way I found when really stressed is just think about getting through that day. Also days out when you get chance. And distraction like tv like below deck or anything light.

After being a brave little soldier all through treatment I had my lowest points just after it finished, a proper emotional wreck. I thought it was maybe the Meno starting up but it did calm down again.

Radiotherapy was much of a muchness for me - although mine was pelvic and 25 sessions I didn't have any side effects to speak of and the actual radiotherapy was done very quickly.

Thanks for perspectives. It's more overwhelming sadness than stress.

I did feel positive first thing today, ready to Do Stuff but had a smear test and ended up talking too much to the nurse who urged me to seek counselling. When has then opened the floodgates again.

I'm clearly still healing though. An annoying seroma has shrunk considerably today.

I'm also annoyed as I've got so many things to do and things I want to do. Right now I'm not in the situation many here are.

Regarding pain, it isn't something I've had much of. I do have peripheral neuropathy, but more the tingling and numbness type than painful although it sometimes jabs. My left shoulder cramps up if I carry a bag, so similar to a someone here - it's a nuisance and I'm currently trying to find a solution for when I walk and need a bag. Even the enormous seroma I had for weeks on end didn't hurt, but it certainly made me extremely anxious because every time the hospital drained it, it filled right up again.

@AGreatUsername

I've sent you a PM x

@Ikeameatballlunch

I agree with the others - radiotherapy is fine. No need to worry. You lie down on a bed and then however much later you get up again! I had to do breath holds, but despite having asthma (under hospital respiratory so not minimal asthma) that was fine too.

Honestly, it's literally really nothing in comparison to the horror show that is chemo. An exception I think is if you need a face / head mask because that is claustrophobic eg head / neck cancer or cyberknife etc, but for an early stage BC you won't need that. You'll be in and out of the room before you know it.

I was lucky in that my skin was totally fine; I've heard that some people can get skin issues, so it's probably a good idea to buy some hydrating cream before you start eg Aveeno Blue I found really nice. Something gentle, no SPF and apply it after the session each day.

About the length of each session, my treatments were on several different areas and my neck, so lasted a bit longer than Silkie's 5 minutes - I think mine took about 20 mins. What was also different to Silkie is that my radio team were all female; they were really sweet people. That was Royal Marsden and I had it daily for 3 weeks with weekends off. How many days have they booked you in for?

@TopOfTheCliff

Thanks for the tip about amitryptaline, I might ask about that.

I hope you do tell us about the £7m picture!

@Silkierabbit

Thanks for posting your wonderful photos of Mauritius! Such wonderful birds, cocktails and scenery at the beach etc

Thank you summer - I have no concerns about radio therapy, just know nothing about it bar I may have to wait a lot (a friend said she often had to wait ages at appts.)

And I know chemo is so much harder. A colleague went through it last year. So it really doesn't feel right to feel low. She's doing the GNR this weekend.

This is a post treatment emotional slump that has come over me. But macmillian said was quite common. I suppose i just wondered if it is?

@Ikeameatballlunch

I didn't actually have to wait much at all at radio, unlike when I had to wait hours (3-4) to see my oncologist. It depends on the hospital I suppose. Hopefully your hospital won't keep you hanging around waiting.

I do think a post treatment emotional slump is probably common.

I have personally almost forgotten what life outside Cancerland feels like. I have been on all these treatments (4 types of chemo, surgery incl mastectomy and lymph node clearance, radio, and a year of MABs) since early summer 2022. I finish soon, and am too shell shocked to even be able to imagine how I'll be feeling after my final cycle of immunotherapies. I suffered a lot during the past year + few months, so I guess it can't be as bad as it has been, although the monstrous thing could return... that will be my fear.

I imagine it's a good idea to have someone you can contact to get support. I felt abandoned sometimes by the cancer team during treatment which is a bad thing to feel, so if you have a counsellor or someone that's maybe a good idea.

My pt warned me about those feelings ”when the circus leaves town” and every one else thinks it’s all over. Apparently extremely common.

Spent today on hospital having a port fitted. My hair has been falling out since my last chemo and I’m now learning how to tie scarves artistically.
Having terrible hot flushes and sleeping badly. Was prescribed something beginning with Z but it’s pretty useless as it doesn’t stop me waking at 3 or 4. My oncologist’s advice was not to sleep during the day. I didn’t have the heart to tell him that I don’t unless I literally can’t keep my eyes open.
Have reached a place where being a cancer patient is who I am and what I do. Not sure that this is a good thing.
Something this thread has taught me is how different everyone’s experience of cancer is and how varied the challenges everyone faces. I do feel held back from posting sometimes how trivial my issues seem compared with some of the people on here.

Hello all I’ve been lurking for several weeks now. I’ve finished chemo and have had a follow up CT scan and blood test. I am seeing my oncologist today to find out the results.

I’m going back to work next week for the first time in 7 months. I’m not feeling very enthusiastic about it tbh. I think I’m ready for a new job but it seems sensible to stay where I am while I get back on my feet physically and emotionally.

A friend who went through cancer treatment messaged me last week about the post-treatment blues which I really appreciated. I notice everyone is desperate for me to say how happy and well I feel. They don’t want to know about the ways I’ve been changed by this experience.

@Ikeameatballlunch Have you considered taking an anti-depressant to act as a cushion once you stop taking HRT? I ask because I have/had an ER+ IDC and opted to stop HRT immediately on diagnosis, although initially, I was going to taper down my dose until surgery and then stop. However, I had a chat with my GP who suggested that if I was going to trial an anti-depressant, in order to evaluate it properly, I really needed to just stop the HRT, which I did. I was really nervous about doing so as I had the most god-awful, debilitating perimenopause and HRT was the only thing that worked eradicating all the many symptoms and made my life liveable. It is now almost three months since I stopped HRT and have been amazed at how few issues there has been. Yes, I wake up a few times a night, but nothing I can't deal with. And the only hot flashes and sweats I have really had has been this week due to the 30ºC heat. Am also allowed to continue with Vagifem which I am really thankful for. Best of all, the anti-depressant has really stabilised my mood, much like HRT did, and I guess the main reason I was so upset at having to stop it. I think I was actually more upset about this than the cancer.

Regrettably, I can't share any experience of radiotherapy as I opted to have a mastectomy in a bid to escape it. I have a problem with both rotator cuffs, and was worried that radiotherapy would exacerbate it. What I do know is to be sure to continue your shoulder exercises and look after your skin.

@Florabritannica you should post about your worries/ issues.
We have cancer - any extra issue should be shared so it doesn’t add to our stress.

Much better to air it in the open (even if we forget to reply), I certainly have found that ‘talking’ does ease problems even if it doesn’t sort them.

@Florabritannica

Whatever situation we might be in, I bet there's someone in a worse situation. I don't think much or anything is trivial in Cancerland really though anyway.

But I know what you mean - when I read about people whose cancer has returned I feel I shouldn't moan about my problems because I have a primary diagnosis (or at least no evidence of metastatic disease on the scans so far).

When I read or hear someone didn't need chemo, has a low grade cancer, or got away with a lumpectomy, I do think lucky them. But at the same time, people with residual disease after chemo probably think lucky SummerCycling for getting pathological complete response.

I totally agree with @RedRosesPinkLilies that talking eases problems. I find that crying can help too, although I could do with more ability to hold back the tears sometimes.

Earlier in the thread someone - was it @RedRosesPinkLilies or @Lisdeflores ? - said they have a master's in cancer patient. I found that hilarious, but so true. I think I've got a bachelor's in cancer patient, with extra assignments forced on me at random times by some sort of evil lecturer who likes to be a harsh marker. Just really hoping my undergrad degree in cancer patient is considered sufficient by the Cancerland authorities and they don't call me back.

Love to all on this thread x

Ha! @SummerCycling I must be the Professor of Cancerland after three years of studying every type of chemo going through two bouts of treatment.

SO here is the story of the picture.
I was married to XH for 25 years. We started out poor but happy with nothing. We scrimped and saved and scrounged to buy our first house in the 1980s. We had kids and prospered. After about 15 years together XFIL wanted to help BIL1 buy a house. He gave him £5000 and gave BIL2 the same. XH said he didn’t need the money so FIL said he would give him a painting he had bought for £4000 to be passed on after FIL died.
After 25 years I left XH and we divorced. There were about ten paintings we owned jointly that were valued but not That One. We forgot about it.
During Covid FIL died. The painting was delivered to XH who thought he had better get it valued. To his amazement it was valued at £1million. This freaked him out so he decided to sell it. Because he had been given it at least ten years earlier no death duties were payable. It went for auction and all the DC and XHs family went along. It sold for £7million! After XH had paid all the fees and taxes he gave £1million to each of his DBs and his DM and £50000 to each of our DC. Allegedly he gave away the rest to charity ( but you would say that wouldn’t you!)
I found the whole thing hilarious. DH was very worried I should have stayed with XH and had a share but I would rather have DH than £1 million any day.
I occasionally rib XH about the £3 million he owes me but he doesn’t think I’m funny. Money hasn’t made him any happier but he has managed to avoid falling out with his family over it all. The story is well known in our little town and he gets his leg pulled.
What pleases me is how my DC can see their DF being showered in money while their DM gets a double dose of cancer, and I am still cheerful and brave and not bitter ( much!) because happiness is not measured by your bank balance. It is almost beyond thought.

Had a good day out today. Went briefly to see DM who is fine and on good form looking through old Polaroid photos from the 60s 70s and 80s. Also I bought DH our favourite cheese which is Baron Bigod Brie from the Fenland Dairy. Yum!! Next time I will message you @Florabritannica and maybe we could meet up at the Poundbury garden centre?
Wishing you all fortitude xx
Top

Beyond belief FFS!