Cancer Support #70. Please post on this thread, not #69, If you have cancer or are undergoing tests for cancer. Rant, rave, scream, cry – whatever helps. Supportive lurkers for Leslie welcome on #69.

[TwitterQueen1]

Thread #69 is filling up with messages of support for one of our own who is very seriously ill. Leslie told me a few weeks ago that she didn’t want any such messages to get in the way of those who need support through their cancer treatment so we are starting a new thread just for those who do have cancer or who are having tests. Could we respectfully ask lurkers and supportive posters to confine their comments to thread #69? Thank you.

We normally start with a brief introduction to our cancers – I’ll kick off. Ovarian cancer dx March 2017. Now on third-line treatment with a trial providing targeted and chemo drugs taken orally.

Hi bumble and redspook - I’m sorry you find yourself here, but welcome

bumble - I know it’s easy for me to say, but please try to make the most of your holiday. I was referred for a biopsy just before Christmas, so I had to go through that, NYE and my DD’s birthday with that hanging over me. All the wise ladies on here said “oh good, you have something to distract you!”, and I thought they were mad, but they were absolutely right. The waiting is horrible but whatever happens there will be a plan, and you will cope xx

redspook - it does seem unreal, doesn’t it? It feels like being in a bad dream. But this waiting really is one of the hardest parts. Please stay away from google and distract yourself as much as you can xx

Bumble I had a definite lump in my breast and was sent for an ultrasound and mammogram on the same day and got the results half an hour later to say it was nothing to worry about. I know it's scary but 9 out of 10 lumps are nothing to be worried about. Is there anyone else other than your husband that you can talk to?

Redspook I have cervical cancer so feel free to ask anything you need to. I also go to a hospital in the North East. This part is the worst but once you have a plan in place it'll be so much easier

Thanks purple, that's really kind. I was at the RVI today but was told that I will probably be treated at Gateshead.
I am trying so hard not to let my mind run away with me, but at the moment I can think of nothing else.

I too have been putting off joining as I am 75 this year and feel lucky compared with you younger ladies, especially those with very young DC. I am widowed with 1 DD but no GC.
I was diagnosed with Bladder cancer last November, After 2 ops were cancelled for Dec and Jan. I had the op, which involved shaving the tumour in Feb. then 6 weeks later a further op to see if it had come back. The results were a shock as initially they thought it was early stages, but now it had become muscle wall invasive and another type of cancer had grown to CIS and required different treatment..
Yesterday I finished my first 7 days of rads which I have survived, despite the hard bed giving me agonising lower back pain afterwards.

I have been told of the possible side effects including the "dire rear" as my area beamed at is the lower pelvis. Also the ever increasing tiredness .
Any other type of side effects I should be looking forward to?

Hi Digerd
I don't know is the honest answer! Not come across bladder cancer and 'shaving'.
Resting is obviously the best help right now. Fingers crossed they've got the bugger. I imagine dire rear will figure somewhere along the line!

Hi digerd

I can’t help with your questions, but wanted to say welcome

Thank you TwitterQueen and IVampire for the welcome. I hadn't heard of bladder cancer either but learnt that when in the early stages this is how it was successfully treated. But when it had spread to the bladder muscle - it is called invasive bladder cancer and I was given 2 choices.

A radical op taking the bladder out and possibly the womb and ovaries too. The latter 2 I can live without but not the bladder, so an artificial bladder can be created to sit on the outside of the stomach or inside taking a piece of the small intestine.

Or radiotherapy and chemo. The latter I was judged to be too frail and with heart problems the radical op was also rejected.

So, Radiotherapy was chosen as my only hope to stop the cancer spreading to my bones etc.
I have 5 more weeks of daily rads. including tomorrow the bank holiday.

Evening all. I've been rubbish, am sorry. Was feeling relatively okay so was burying my head in the sand, Pretending that cancer wasn't real and pushing on with things.

Am now on my second round of capcetabine which has flung me onto my ass in no uncertain terms and that's me fecking told

Hope everyone is going okay, I think of you all often

Welcome Digerd No advice from me either I'm afraid as mine mine started of as cervical. With the radio I only dire rear and tiredness but I think the tiredness was mainly driving to the hospital and back everyday

Oh Keepcalm I remember feeling exactly the same after my second and third lots of chemo. I know it's not much help right now but you WILL feel better. Will your staff take over tomorrow for you so you can spend the day resting and slobbing about?

Sorry to see more newcomers hers but welcome. This is an amazing place with support and encouragement from truly lovely people.

%th session with Paclitaxel last Thursday also with the first dose of Zoledronic Acid. I have been doing OK with the Paclitaxel and the three weekly Herceptin hasnt added much in the way of side effects. The ZA though has not been nice!! They did warn about the joint/boner aches and pains and thre general flu like symptoms but I didn't expect to feel quite such a zombie for the past three days. At least the ZA is only every six months so I can forget about that for a while. Also so far so good with the cold capping. Not pleasant but it is working and so far no serious shedding.

Next Thursday will be the half way mark for the Paclitaxel

I hope everyone is having a peaceful bank holiday and a good week to come

@@meercat23 the zoldrol effects only happen after the first dose. I felt so ill after the first one. Have had two more since then and felt fine - even went to work after the third one.

flyingarcher That's great to hear. I had been doing so well with the weekly chemo but this week has knocked me for six a bit. If it is a one off I can cope with that.

Hi Digerd . I am 75 too and was dx with triple negative breast cancer in 2006. I finished treatment in 2007 and, touch wood, have been ok (ish) since then.
I currently have lots of niggly symptoms which I am putting down to anxiety as my dh has been diagnosed with prostate cancer and is waiting for results of a bone scan.
I’m sorry I have no advice or experience of your type of cancer. I did have terrible bum burning diarrhoea when I was on chemo but that’s not relevant to you.
All the best love we are good at cyber hand holding if all else fails.

Hi all,

Apologies for the lack of updates for some time. I have had iPad issues and a few things going on IRL aswell as beginning to feel a bit better/do more but still.collapsing into bed absolutely shattered at the end of the day (altho this could just be my new tiredness levels now)

I have just caught up with everyone's news over the weekend. I am so sorry to read your updates purple I hope the clot is dispersed asap and you are not in pain from it now & can wiggle your toes again.
I'm sorry to read about your issue with the poo too. Was that because you had dire rear or is it constant now? Does what you eat make any difference too? (Am thinking if you were to eat less acidic stuff not advising eating blueberries will fix it btw)
I hope it is not causing you problems now and if it is you have a really good barrier cream for it.

BitofFun how did you get on at your appt? I hope you have also had a really good distracting weekend too.

TQ so sorry to hear your updates. Do you know when you will have the new plan in place?

Sorry to see so many new people on the thread since I was last posting. I found keeping busy whilst waiting for results beneficial. A holiday would be perfect, or I had recently moved, so painted most of the rooms whilst waiting and during treatment. It started off to give myself a nicer place to recuperate if I ended up having chemo...

digerd my Dad had bladder cancer around 6 years ago. He had the radical op that you mentioned with no rads. I hope the radio blasts yours and you don't get too many side effects. Sadly dire rear seems to be a common SE in most cancer treatments it seems. I had radio for BC and it did make me feel incredibly tired. I am on my own with young children and I was putting the clock forward.some nights to get them into bed sooner I was so shattered!

keepcalm sorry the 2nd round of chemo is hitting you worse than the 1st lot. Be kind to yourself and rest as much as possible when you can.

Has anyone had radio on a breast that has had a lumpectomy & node clearance? I am wondering how long it took before their affected breast stopped being sore. It is nowhere near as painful as it was, but does feel still like a bruised plum where the skin surface is ok, but underneath is a bit mushy and uncomfortable (sorry that is the best analogy I can think of!!)

Am just at my parents for a few days break in half term & everyone seems to be moving, so had better get up. I hope everyone is as well as possible and has a good day xx

Morning all.
I have an appointment to see my CT nurse tomorrow to be given my 5 year surveillance plan. Not sure how that works. Will I be given dates or just estimates?
On Friday, I am meeting with my consultant who operated on me in March to remove the Cancer.
It's silly but I'm feeling really nervous about both appointments. It'll be the first time I've been back to hospital and life has got almost back to normal, at least on the outside. Inside, I'm struggling a bit do have started CBT to see if that helps.
Love to you all x x

Hi all, i have an ultrasound in an hour to check my liver and gallbladder as had some concerning niggles. Wish me luck

Everything was fine thankfully. Just waiting for colonoscopy now x

Hi everyone, and welcome to the newbies who have joined in the last few days/week. As ever, sorry for anyone who finds themselves dealing with a cancer worry or confirmed diagnosis and I hope as many as possible are able to move on from here with good news! Bumblebee I have BC (as do several others here) so if you have any questions on it (should it come to it) I’m happy to try and answer although I am no veteran, only in the early stages of treatment. In the meantime hopefully you can relax on your holiday despite the worry and then get good news at the clinic.

Apologies for not name checking individually with those awaiting results etc but I hope good news comes through when it comes. purple have they got your DVT under control?

TQ have your DD’s exams finished now? Any further word from the docs on what might be done?

For me, I’ve just had chemo #3 today and was fortunate enough to find the second one went well with manageable side effects and a good return to energy levels in between. I also had a follow up ultrasound last week which showed a really good response of my tumour to the cycles so far, which is really encouraging with 14 more to go.

Hi Brassica and everyone
The plan is to try stereotactic radiosurgery but the max tumour size for that is 2.9cm and my largest one is currently 2.9cm. I'm having a consult today, plans and mask-making tomorrow, followed by 3 lots of RT in mid-June.
If the tumour is too big (they'll know from CT and MRI again tomorrow) then it will be whole brain RT, which obviously is not great - too many side effect risks.

How are you Purple? I hope you are getting some decent food.

TQ - hope everything goes as well as it can do today xx

Good to hear from you on here Noodles. How is the house coming along? I hope you've managed to get a few rooms completely finished so you have somewhere calming to relax in

MrsEd that's great news, hopefully the colonoscopy will be the same

Good luck for tomorrow TQ, we're all keeping everything crossed for you as usual but let us know how you get on when you get chance
I'm still in hospital waiting for them to try and get in touch with my oncologist who seems to have disappeared my leg is still swollen and I'm still waiting for them to measure me for a compression sock. My mams just been and helped me get in and out of the shower as I'm just so weak, I don't think she realised how bad I am until I had to lean on her to get in and that made her cry which made me cry I hate what this stupid disease does to families

Purple I wish I could give you and your mum a hug right now. Sorry it’s so shit xx

Thanks to everyone for the welcome.
I have my CT scan tomorrow, but the MRI has not yet been scheduled. Am I likely to be told anything afterwards?
I am expecting a call with the biopsy results tomorrow afternoon, which is scaring me shitless.
I know that my diagnosis will be confirmed, the fear relates to how bad it is.

Oh purple I feel for your mum so much - and for you knowing she's in pain. It does suck massively and it is very cruel indeed - more so on those we leave behind. I hope they let you go home soon.

Red - I don't think they will say anything after the cut scan. They haven't for me. Good luck.

TQ all the best of luck tomorrow and praying the tumour has stayed at 2.9mm. What a bloody rollercoaster. Have you had any conversations with your girls yet? Can't be easy. I would personally try to avoid it for as long as I can!

Hallo thegreylady. Glad you had a happy ending to your breast cancer and good luck for your DH that his cancer has not spread to his bones.
Today I sat next to a man who had been diagnosed with Prostate cancer and was waiting for his radiotherapy session. He was very relaxed about it all.

redspook
In my experience to both I have not been told anything at the time and had to wait for a "follow up" appt to be told the results even with a good result.

It was my 10th rads today and I crashed somewhat, couldn't get out of bed after my lunch lie down and just wanted to lie down, very queazy . Recovered after eating some thing sweet, but feeling the fatgue and ickyness returning so must get ready for bed now and hope I will be able to sleep more than the constant water works have allowed for several months now. Then rise at 5.30 tomorrow morning to get ready for hospital transport that very kindly picks me up and brings me home.
Goog night.