Cancer support thread # 75 - come on in!

[Bloodybridget]

This is the new thread for anyone at any stage of cancer, from noticing a possibly warning sign, through tests and scans, diagnosis, treatment and beyond. Come on in for advice, sympathy and support.
The last thread is here.

If you've been on a previous thread, please come and say hello and introduce yourself!

If you are a relative or friend of someone with cancer and looking for support, there are other threads on this topic - this one is for cancer patients ourselves.

@balkanscot hi and yes it is a bit crap! It is a lot to take in hence being awake at 3.55! I go from calm to getting into a bit of a panic too! Yep I have to thank my DF for the gene!

It’s hard waiting - so hoping your consultant contacts you with good news before Tuesday

I start chemo {Pacitaxel and Carboplatin) on Tuesday. Feeling very anxious and tearful I've convinced myself that I will get all the side effects going. I've decided not to use the cooling cap so I need to sort my hair out this weekend. I also met with some friends yesterday which was lovely, but it also brought it home that I won't be seeing them for a long while due to shielding. I was already feeling fragile because I have been shielding since March due to underlying health conditions, its hard seeing people going back to 'normal'

Hi all

I bring tidings of joy! Despite still feeling bloody awful I found out this morning that I'm in remission. 🙌

I still have to finish treatment (one more chemo & transplant) but Doc says I should be good for a number of years. (Hopefully by then they will find nicer treatment/cure)

Lots of snotty tears from me today - more than I when I was diagnosed and I'm ready for a lie down - but I think I now have genuine hope that I can beat this one day.

@InOtterNews I am so happy for you!

@InOtterNews good news, congratulations x

inotternews fantastic news! I'm so pleased for you.

Brilliant news @InOtterNews.

@InOtterNews - good for a number of years deserves tears of joy!

I hope you don’t mind but its also spurred me on to hang on to some of that hope too!

Morning all! Lots of posts here since I last checked in.
Firstly hello and welcome to @MackemLass79 and @zzhallk5, Mackem it's horrible waiting for tests and results, crossing fingers for you that you'll be fine. zzhallk5 I am so sorry, what a very hard place you are in. I hope you have lots of support IRL, there will be plenty for you here.
@InOtterNews that is brilliant news, I could almost cry for joy with you! I reckon it gives us all a boost to hear that there's a good prognosis for one of ours!
@ElaineMarieBenes glad you won't have to wait long for surgery, it's good to get it over with. Do you have a partner or close friends nearby who can give you TLC?
@Lurkeycakewoman good luck with the new drug. I was bald too, it took about four months before I stopped looking like someone who'd had chemo!
@Trumpton I hope ibuprofen and Voltarol help with the pain and that the physio massage starts soon. Also of course that mammogram results are fine.
@balkanscot sending a handhold while you wait for news and the appointment.
@Starmer yay for holidays! I hope your DH will be able to adjust his work patterns, it's really important that you can rest as much as you need
and concentrate on coping with treatment. I don't want to sound too gloomy, but you can't expect to carry on anything like normally.
@Hippiechick162 sorry to hear you had a bad reaction to tamoxifen, you're still taking it, right? Did you have to get another drug to prevent the reaction? V much hope bone scan happens soon and no bad news.
@Lizdeflores you'll be on the same chemo drugs I had. I managed ok, of course I did lose all my hair. Had to have a lower dose the last time because of neuropathy, which has persisted, but it's not bad. Take care and good luck.
Sending warm wishes to everyone here. We have sun in London which is very cheering!

@Bloodybridget - the operation is going ahead now on the 14th (assuming I’m negative for COVID-19 as had the test today)! Yes you are right I need to get this done!

I do have my amazing DH here as well as two very close friends who have been brilliant too. Work has been supportive (I am ‘WFH’ for the foreseeable - in between sick leave).

Wishing everyone else well too! The sun is shining here but close to 50 most days now! I do miss London but did manage the beach for an hour at 05:00 on Friday. It was a magical sunrise and the sea wasn't too warm! I guess I won’t be back there for a while!

[quote ElaineMarieBenes]@InOtterNews - good for a number of years deserves tears of joy!

I hope you don’t mind but its also spurred me on to hang on to some of that hope too![/quote]
Please do!

When I was told it was stage 4 I never thought I'd get to this point. And so quickly (diagnosed in March).

A week or so ago I was ready to jack it all in because I just felt so awful. I just didn't think I could do it.

I know that I'm going to have a few more tough months ahead but the pain and sickness will be worth it. Knowing that I'll be ok for a while has given me the mental boost I need more than anything.

@InOtterNews what lovely news to log in to. I am so very happy for you.

Haven't been on this thread yet so shall introduce myself for those who are new since I last posted. I'm 33 and was diagnosed with bowel cancer November last year, chemo started in December - March and then had my op end of April. I am nearly 11 weeks post op now.

Sorry I haven't been on and helping support you all (I'm fairly sure I say sorry about how rubbish my posting is in pretty much every post) but I have been struggling mentally and just have this awful awful feeling that it is going to come back and I don't know how to stop thinking like that.
Recovering from op is going fairly well although I did think I would be a bit further along and nearly back to normal but I am still getting pain even when walking, but not all the time, so no exercise or anything too much really. I am really struggling with that and just my body itself I have gained soo much weigh since starting chemo, I'm such an emotional eater so even though treatment is now finished I'm still stuffing my face and can't seem to stop. I just can't cope with out disgusting I am.

@Squiffy01. Sorry to hear you're struggling. I think it's amazing you've come this far. So what if you've gained a bit of weight. Your body's is working hard to survive. Which it has done. Well done. I can't say I fully understand your worries of
Recurrence as I'm still at the beginning of treatment. After biopsies of a 5 cm rectal mass showed high grade dysplasia doctor talked of possible t1 t2? Don't even know what this means!! He told me wouldn't know extent of cancerous cells until it's excised and I've been referred on for surgery with possibility of stoma but 6 weeks in I am still phoning to chase up appt to discuss my surgery. Covid apparently has affected theatre spots. I'm in constant discomfort with back pain and other symptoms and worry about it spreading. Worried all the time and I'm
Struggling with sleep. Cancer is constantly on my mind and I feel Exhausted but as soon as
My head hits the pillow I'm wide awake and can't sleep but then when alarm goes for work I'm ready to sleep then when I can't. I don't do well on little sleep!!

Sending best wishes to you and positive thoughts. You got this! Keep going.🌈
X

@gillmoregirl

Theres a v good Macmillan pamphlet on colon cancer with diagrams. The T stands for tumour and T1 is the very best for outcomes. It means the cancer is just on the inner layer of the colon. I know 2 people with T1 who just had surgery, no chemo and no recurrence in 8 and 10 years. With T4, the tumour has spread to the outside of the bowel, either right through or just a few cells in soft tissue.

I'm T4, with clear nodes and no mets, and no visible sign of tumour breaking through the colon, but microscopic cells on soft tissue. This makes me Stage 2.

So sorry you're having to cope with pain as well as worry. Fingers crossed you'll hear soon, but if it's any consolation I think you'd be higher up the waiting list if they were more concerned about your prognosis.

@Squiffy01

Good to hear from you! The best advice I had was to rest before an activity, and stop when you're tired. Trying to power through just means you'll have a worse day tomorrow. With colon cancer, it's not just removing something nasty. The joins have to heal, too, while still functioning as a vital organ and that takes longer. Hope you've got plenty of help. I only have to look after myself.

@gillmoregirl that is such a struggle and no wonder you can't sleep. Are you able to get any sleeping tablets to get you through?

As Thymeout said above T1 is the best it can be as it means it has been found early and isn't big and hasn't gone anywhere else. I was T4 stage 3 as it was it went through all walls of the bowel and into lymph nodes but had not spread anywhere else. I found the bowel cancer UK website quite helpful for information and support and they have an online forum also which isn't hugely active but active enough.

@Thymeout thanks you are right. I never thought of it like that, it's not just about taking it out but it still has to heal and function at the same time. My husband has been amazing with doing things and looking after our toddler. He has been working again for three weeks now which makes things slightly tricky as still shouldn't be lifting him but we are managing and since he is still work from home he has a break to get him in and out of bed for me at nap time.

@Squiffy01 @Thymeout Thank you both for advice. I have been telling myself that if it was more urgent they would have contacted me but there is still that niggle. If only they would send appt to even speak to new surgeon and have some idea of timescales would help. Having nothing planned is more scary. My Macmillan nurse did say that colon cancer has tendency to be slow growing too. The only thing is that until this is cut out they just don't know.

Thankfully I slept better last night. It makes a world of difference.

Best wishes to all the lacies xx

Hi all, I've just joined this thread in anticipation of my appointment tomorrow.

I was experiencing abdominal pain so my GP ordered an ultrasound which showed a complex cyst and fluid in the fallopian tube. I left the scan feeling ok but within a couple of hours my GP called me to say she'd reviewed the scan and was sending an urgent referral to gynaecology and asked me to come in for a CA125 test which came back about a week later at 62.

I'm in Scotland so I don't think we have the same 2ww, it's taken 4 weeks for me to have an appointment, which as I said is tomorrow.

I am just so worried and expecting the worst. The last month has been awful.

It's been really comforting to read this thread and hear your experiencesm it makes me feel that if the worst happens tomorrow I'll still be able to put one foot in front of the other.

Hi @ Untredwaere I was in your position a month ago waiting for investigations and results is awful.
You will find support and knowledge on this thread that will help you put on foot in front of the other. Fingers crossed for tomorrow x

@Uhtredwaere. Complex
Cysts and any other inflammation will raise ca125 levels. I had complex cyst with ca125 level of 58 surgically removed two years ago. It was endometrioma cyst and non cancerous. I hope that tomorrow brings you good news.

Anybody looking for Netflix recommendation :- I've distracted myself this past 6 weeks with Good Girls. Worth a watch.

Good tip, GillmoreGirl, I'm going to give that a go x

Just had phone call with Clatterbridge.
All fine . I am to continue with Herceptin for full 18 injections . Cutting it short was not discussed .
Heart is good as are bloods .

@Uhtredwaere how did you get on today?

Hi all. After completing my treatment I try not to dwell on cancer but at the moment I am faced with lots of "anniversaries"
A year today since the breast clinic appointment where I waltzed in expecting to be told it was nothing only to be faced with a head tilt "we think it's cancer". There followed weeks of tests and the strain of keeping it from DC temporarily so as not to spoil graduation, holidays etc.
Uhtredwaere sorry you are here but hoping you get some answers today.
@InOtterNews brilliant news x
Waves @Trumpton

@ElaineMarieBenes hope everything goes fine tomorrow, can your DH go to the hospital with you? Will he be able to visit?
@Squiffy01 sorry you are struggling mentally and physically. I do understand about feeling crap re weight gain, but if you were your own best friend you would be reassuring and non-judgmental . . hope the post-op pain gets less soon. Fear of recurrence is par for the course, I'm afraid, I don't know if there are any good tips for managing it.
@gillmoregirl wishing you better nights - zzzzzzz - I can never manage two good nights in a row! But I don't have to get up for work, or even be particularly alert (dozy old woman emoji).
@Uhtredwaere welcome to the thread, none of us ever wanted to be here, but as others have said, it's a very kind and supportive place. Hope the news today is not bad.
@Trumpton glad to hear the mammogram was fine, and your heart and bloods too.