Cancer support thread #77 - newbies welcome

[InOtterNews]

I couldn't see new thread so here we go...

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh)

@thereisonlyoneofme 🌸

My PICC line does not work so it's got to come out and a new one fitted. Have a cánula for my treatment. My haemoglobin levels are low so may need a blood transfusion.That will explain why I'm out of breath and light headed.

@thereisonlyoneofmeere I spent about 3 decades not wanting to be alive but too cowardly to do anything about it because of being an only child & what it'd do to my parents. I then got on the right meds, had the right kind of therapy & now am merely ambivalent! I also have my kids now which I had due to my decision-making strategy for tricky decisions: if it's reasonable, do the thing otherwise you might be sitting there later when it's too late, thinking "What if I'd done it? I should have done it" etc. I think there's a twee saying about only regretting the things you've done, rather than the things you didn't.

Is there anything you could plan to do afterwards if you did go ahead? Learning something, creating something, growing things, volunteering, visiting places? Staying in pet-friendly places with your dog by the sea or other wonderful landscapes this country has to offer? Travel even, if we can. There are companies that arrange travel for people with medical needs.

I mentioned taking meds - have you ever taken anti-depressants? I was against them for so long despite people seemingly evangelising about them. When I finally took them I actually began to enjoy the odd thing & feel content. Just saying this because if you had the surgery & still felt flat about living, it could be an option. Or they might help you go through it. But if you do, go to a psychiatrist not GP, as there are loads of different types for different needs.

Yesterday I went for a bone scan. It's nearly an hour to get there. Appt at 12.20pm he couldn't get the cannula in for the dye. It was on the 4th go he did it.
So now my arm is badley bruised. Had to wait around for 3 hours as it wasn't worth coming home.
I wore a slip on pair of shoes which I've worn lots of times with no problems. But this time they have rubbed the back of my heels.
Today I can't lift with my arm it's black and blue. Can't go for a walk as my heels hurt.
Every time I need bloods etc they can't get a good vein.
That's my moan for the day.

Hello, i just wanted to introduce myself too. I'm 44 and have been diagnosed with stomach cancer today. I have two DC's 4 & 8. I'm all over the place, crying then feeling numb. Im having a PET scan next week so should know more then before starting chemotherapy.

I'm really not sure when to tell my children. Does anyone have any advise?

@quinin Welcome to the thread no-one wants to join. Pull up a chair and let us support you. I don't have any advice on telling children because mine are a lot older but @HumphreysCorner (I think) has a blog and she wrote about it.

@Noidea2114 That sounds awful, just not what you need.

No, not me @MrsPnut

Hi @quinin So sorry to hear your news. I'm 48 with Stage 4 pancreatic cancer. My youngest kids are twins aged 9.

DH and I were advised to be honest with the kids, make it clear they can ask us anything and to always answer their questions truthfully. I really believe that kids ask the questions they are ready to hear the answers for - even if those answers are awful. So far that advice has been helpful.

We've had some heartbreaking conversations. But I think that is better to lying, or giving them false hope which will lead to mistrust and resentment down the line.

We don't overload them with information. But we do answer questions honestly and give an outline of where we are.

That said we also try to focus on the positive and the here and now - rather than what ifs and the future.

Sending you much love. It's a tough journey we're on - but there is great support on this thread.

@HumphreysCorner

No, not me *@MrsPnut*

My apologies, it is @AlbertCampion. I obviously need more sleep.

Hello @quinin. So sorry to hear your news. It's so hard when you have to deal with not only the shock of having cancer, but also the pain of telling others.

My DH found a video on YouTube which we found v useful for telling DS8: It brings up lots of things that I hadn't thought of - like the fact that children might think that they are somehow to blame. As it is, our son took it surprisingly well and has been more resilient than we expected. I do advise taking all the help you can get, though - we informed school and they have been fantastic. Despite him not being in because of lockdown, they have arranged a counsellor for him, and all the staff are aware and very supportive. It makes me feel less awful about it all, knowing he has that network there.

As HC says, I do also have a blog in which I talk about telling him (https://darkmutterblog.wordpress.com/ ) but if you're feeling overwhelmed at the moment it might be a bit much as there's lots of other medical stuff in there too.

Sorry I have been quiet recently - I have been skimming through posts but I have a v bad case of chemo brain and most things are a bit foggy at the moment! One positive thing to report post-PICC removal - my son has been giving me LOADS of cuddles! I couldn't understand why he was suddenly so affectionate, and then DDis twigged that it was probably because he had been scared of knocking the PICC before, so is now making up for lost time. So that's a definitive plus.

Hi all, just back from the hospital. Turns out they took 3 lymph nodes last week and all three still had cancer cells in so I'm now awaiting another op to remove the rest of the nodes. I really feel knocked by this. I don't know why, I knew it was a possibility that I'd need another op. I think it's because there was still cancer in every node they've looked at. Hopefully that won't be the case when they remove the rest. Back to completely isolating so no more walks for a couple of weeks. The sun is out, I need to give my head a wobble but I'm pretty fed up.

Thanks so much everyone for all the lovely replies. It's been an emotional day that's for sure. So sorry to all of you who are going through this but I'm very grateful to be able to put my feeling somewhere to people that understand.

I have a DH but we are in the middle of divorcing, he's fab with the DC's and I've always been grateful for that.

Have people had their covid vaccines? I'm eligible but haven't had it yet as I've been having endless tests etc and did yea this to be unwell but common sense would say to have it before I start chemo?

@thereisonlyoneofme
I've been thinking a lot about what keeps me going. I think when I was given my diagnosis there was no question in my mind that I would take the treatment offered to fight the cancer. I have a 7 yr old I desperately want to be here for him. I also find it hard to believe that this is it for me I'm not sure what my life can be or how long my life will be but I'm sure there is more life for me.
It sounds although your team feel that the surgery will help you. Listening to others and in my experience surgeon's are really reluctant to do any surgery they don't think will positively Improve your life
Reading through your other post it sounds like you may be going through a bereavement,it must be very difficult to deal with your diagnosis as well. Please make sure that you speak to others to get support I really recommend Ovacome I have found them very helpful.
@quinin
Sorry to read about your diagnosis but I'm glad you found your way here it really helps.
When I told my son we were just very truthful with him and promised to answer any questions he may have. Also we felt we wouldn't overload him with information and let him come to us when he was ready. We also told the school so they were prepared for any potential upset.

@Lubballoo here to hold your hand on this journey. I was ok until week 5 of chemo then the challenges started but I'm feeling strong about it and so is DH and my 2 eldest girls.

@quinin sorry to see you here but it us the place to be for support. I've finally booked my first Covid jab for Monday so hoping to be well by Friday for my next chemo.

Not been abroad since 2011 so as DD1 is 18 this year I am looking to book a villa in Cyprus next year when she is 19 as I need something to plan after all this and it's probably the last time my baby girl will want to holiday with us.

Big wave 👋

HC x

@quinin so sorry about your diagnosis. I was diagnosed 10 days ago with cervical cancer. I don't have DC but telling my mum and dad was difficult. I've been on a rollercoaster this week. Crying one minute, fine the next. I don't think there's any roadmap to this. I like to be organised so I've concentrated on getting cover for work, getting organised for treatment and getting organised at home. It's helped me to be able to control the small things that I can. Try not to fall into a Google worm hole. It's lead me to some very dark places.
Contact your oncology team if you are having a wobble. I find speaking to the people leading my treatment helps calm me.
My Covid vaccine is booked for next Tuesday and I'm due to start treatment in 2 weeks.
I will keep you all in my thoughts

@AlbertCampion So sweet about your son and the picc line - my two year old is also hyper aware of my port and often asks if my “ouchie” hurts...

@SerenaTuccot and @quinin Hello and belated welcome to the thread! I’m sorry you have to be here but can absolutely vouch for the wonderful support on offer.

@BadEyeBri I was exactly the same in the early stages, re not wanting to tell people and trying to maintain some sense of the real me - I think it’s a totally normal reaction. It took me two rounds of chemo to feel that I could really own the news and have now let it become common knowledge, and actually the love and support that’s come out as a result has been lovely - not embarrassing or awkward at all. But I definitely wasn’t ready for that in the early weeks - didn’t even want my in-laws to know until the first round of chemo was done. Take your time, but so be prepared to be able to tell people without feeling like a “lesser” you. And in the meanwhile, Covid does mean that you have the perfect excuse to hibernate a bit...

I’m on day 5 of my first round of Docetaxel (have finished three rounds of FEC and will do three of Dox). Definitely had major munchies on the steroids for the first few days. Now am in the throes of bone pain and hating it. Hard to think of doing this two more times. But the tumour isn’t palpable, so I’m hoping this bodes well for surgery.

Re nails: did anyone here use keratin on their nails to help strengthen them, and did it help? I’ve been doing mine at night for a few weeks now but not sure if I’m wasting my time...

Morning all - gosh this thread moves fast!
Firstly a warm hello and welcome to newbies @KitchenFishCurry, @Alittlewornout and @quinin. I am so sorry about your diagnoses, it's such a scary time when you're first diagnosed and don't know what's going to happen. This is a very friendly and supportive place, so I hope it will help you to post here.
@Percivalthebabyspider glad to hear the biopsy was clear.
@HumphreysCorner what bad luck that you have to have the PICC line replaced. I had low haemoglobin and needed a transfusion before my last chemo, I think it's still a bit low as I'm still breathless. Hope you get a nourishing pinta soon!
@MrsPnut well done for making a fuss, and I hope you get a date for surgery soon. It's amazing how they throw these curveballs at us and expect us to suck it up!
@BadEyeBri good that you have a treatment plan now. Hope all goes smoothly for you.
@SerenaTuccot hope you are feeling OK on the rads.
@Lubballoo I'm so sorry you have to have more surgery, what a blow. Do hope they get everything out next time.
@Noidea2114 not a good day for you with the bone scan! Hope the weekend is better.
@backformore sorry you are having bone pain - I get some from the filgrastim injections and was advised to take paracetamol in 2019 when it was quite bad. Are you able to take anything that helps relieve it?
I'm off to the hospital to get bloods done again soon. Yawn.

I have gone AWOL for a while. Had my surgery mid-Dec. 13 lymph nodes out, out of 13, 6 showed no sign of tumour anymore and 6 had tumour that was significantly reduced (to 5% or less)showed less). So, quite a good result from chemo (thank goodness, all that feeling crap since Aug. 2020 with my 7 sessions of chemo did some good but boy, did it destroy me mentally & physically).

Just finished radiation last week, had it for most of Feb. Now crapping myself waiting for a CT scan and a meeting with my oncologist at the end of March.

Have been feeling absolutely bereft since my last rads (last Wed.), there are times when I am completely consumed with black thoughts, thinking that there may be buggers floating around me and making themselves at home without me knowing, even though there is no evidence of this. Just really SO, SO scared of mets., instead of feeling positive that even the second time around I have been extremely lucky.

Sending so much love and hope to everyone, off to read all those pages I have missed since Dec.

Oh, yes, my hair is growing again!!!! Fuzzy, significantly greyer. But hair, nevertheless! 🎉

@BitOfFun big, big hugs! You are in my thoughts. 💐

@InOtterNews I am now seriously worried, last post was 15 Jan.!

Forgot to mention that I had my OAZ Covid jab, part 1, two weeks ago. Had pretty unpleasant side effects overnight (38.1 fever, aches, pains, uncontrollable shakes) but they subsided by the following morning when I just felt tired for the rest of the day. So, so glad I got it, roll on 5th May when I get to have the second dose.

@Balkanscot good to see you again, and I really hope the scan gives you the all clear. I do understand the anxiety, I'm sure I'll be feeling just the same when I'm through with chemo in May. If your scan is ok, will that be the end of treatment?

Thanks, balkanscot. I'm up waiting for the Palliative Care team to arrive with some lovely painkilling and anti-nausea injections. I have the worst, most vomity, migraine I've ever experienced

Sorry to hear that BitOfFun, nausea and vomiting are just the pits. Hope the drugs arrive swiftly and you are more comfortable again soon.

They came and went, I felt better for a while, and now I've had to call again. I really don't know where it's all coming from!

I hope it's settled down bitOfFun and you managed to get a good rest. Sleep dep makes everything worse IMO.

BitOfFun I hope you're getting some kick ass meds. I get horrific migraines. I find lying still in a dark, quiet room with a cooling eye mask (normally a damp face cloth, nothing fancy) and sipping cold water helps until my meds kick in. Sitting, standing or any type of visual stimulation makes me much worse. Really hope this goes quickly for you