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.

TQ. I know a bit what you mean. I went for a walk with a friend the other day. It was a beautiful day in lovely countryside. If I’d been on my own I would have kept going but friend was marching ahead of me and there was no way I could keep up. I felt a bit shit.

BitOfFun. Have the Drs given any advice about exercise for you? I can understand your concern about not wanting to do anything that is risky for you x

Fear ye not, re having to do tons of exercise. The latest big studies show that it's good to do something, to help the body stay well after treatment, but 'something' can be walking briskly enough to get a bit out of breath, for 10 mins, a couple of times a week. If people can do more, e.g. walking up to half an hour most days , great. But just moving more, in a way that brings a smile to the face and is doable, is the useful thing. (With medical approval of course). Existing cancer treatment still treats cancer, and generally does so well, so those who cannot move much can take comfort from that.

I'm going to ask my named nurse if there are any physios or qualified people who could help me, I think.

I was recommended yoga by my nurses and as Amber says just getting moving more such a slow walk when you feel up to it. Any exercise helps no matter how little.
I have a stool in the kitchen that I have to sit down on now just to make a cup of tea as I struggle with even standing up for too long now but if you can exercise then I believe it really does help

I see people out of my window going for a run and wish I was still able to just walk to the local shop

The principal side-effect of my drugs is fatigue and weakness - I think primarily because they are PARP inhibitors and therefore affect my body's ability to repair cells. I like to be outside so walking is my thing - with a few rests in between.

The principal side-effect of my extremely slothful personality is fatigue and weakness, so I have trouble with distinguishing it from any consequences of my medication

Hi, I'm new here so forgive me if this is not the correct place. Just over 5 weeks ago I was diagnosed with adenosarcoma. I was allocated a very nice Macmillan nurse! Then went to see the oncology consultant who made no bones about the fact that because I am overweight everything he would recommend would be very risky. If I survived the op I could just as easily die in post operative care . He left me feeling that I was going to die and it was my fault because I dared to be overweight! This was on top of me and my family having to come to terms with the diagnosis in the first place. I know the consultant was the sort who believed in telling you how it is. Which is admirable but in light of what happened a couple of weeks later maybe he needed to tone it down. Surely these meetings and the information and treatment should be made in such a way as not to frighten but inform in a compassionate way. I left that meeting feeling that my life was ending. He sent me for a CT scan to see if it had spread - because if it had then well all options were off. Also he had sent the samples for a second opinion but he thought there was no doubt. On April 1st this year I went to meet the oncologist again for the results of the CT scan and what treatment plan had been put together. Thankfully the CT scan showed no further evidence of spread. But more importantly he had received the results of the second opinion. It seems I do NOT have cancer only precancerous cells. Of course I am over the moon and was walking on air when we left his office. However why put anyone through this dreadful experience until all facts are established. I know that all cancer sufferers can only dream of this but I never had cancer and was made to feel like I deserved it. Sorry - rant over

That sounds horrible, caz. Perhaps contact PALS to make a complaint?

well it sounds better than admitting I'm a lardy fat arse

Hmm not really funny

HI all,
I'm sorry I posted and didn't return a couple of weeks ago. I've been a bit head in sand and not really wanting to be talking about anything, I am massively drama averse and saying I might have cancer sounds quite attention seeking in my own head if that makes sense? Like I am trying to be part of a club that no one actually wants to be part of just because I have FOMO... Thank you for the lovely messages etc though, I feel massively rude for just bogging off.

I've seen the doctor to review everything from the scan, I have one growth (there are three in there) that is possibly something Not Good and the symptoms I have point towards that also, but the trouble with gallbladder cancer is that you can't really tell if it's definitely cancer in the earlier stages unless you take the gallbladder out so everything is based around "probably" and "could be" etc. The standard procedure for growths in the gallbladder if they're around a cm or more is to remove the whole thing because it's one of those that is generally found when it's too late and they tend to be of the "better safe than sorry" camp.
I don't want surgery unless it's absolutely necessary, I run my own business and have a daughter at uni who needs financial support so I can't afford the 6 weeks off work I would have to plan for. My job can be very physical so I wouldn't really be able to carry on from home during recovery. Removing the gallbladder for cancer treatment or prevention is apparently more invasive than a normal gallbladder removal so the 6 weeks would definitely be needed. Also I don't really know how I would feel if they took it out and then found there was nothing actually wrong.

My doctor had agreed we are going to re-scan in 6 months to check for growth as that's the biggest indicator that it's malignant but he doesn't like my symptoms (night sweats, tenderness in that area, slightly raised proteins in bloods and nausea) so I have to have antibiotics again to rule out an underlying infection (the raised protein is an indicator or either infection or malignancy) go back in 3-4 weeks to see if there is any change and if not he is referring me for surgery.
I think i've decided that even if he refers me I'm going to ask for the watch and wait option. I've been reading around the subject and ultrasound scans to check growth are the best indicator of an issue and I am still not convinced that I actually have anything awful.

I'm so sorry to read the news about leslie , I had minimal contact with her but she seems to have been a huge positive influence for so many of you.

purpleunicorns I'm sorry to read your last update about things as well, hoping you're as comfortable as you can be and spending as much time as you want with your friends and family.

re exercise, one of my friends has a brain tumour and is still running weekly but does have to be careful now as they are starting to get some muscle wastage, he's further along the road than most now so I think it's an issue with balancing calories in as he doesn't have the best appetite now with calories out.

Caz I'm sure TQs post wasn't about you, just cross posted I think as she was referring to the previous exercise posts

Oh dear! Caz of course it wasn't about you . I was responding to BitOfFun.

Hi caz sorry about your experience. You might get some more useful advice if you start your own thread as none of us here have gone through anything similar. When we were told we had cancer we actually had it so we won't be much help to you. Good luck.

Definitely a reply to BOF's post. TW is quite literally the last person who would be rude to anyone. PALS sounds like the best port of call Caz as you should not have gone through all that

Name change let's be honest - if anyone will be rude it's more likely to be you and me, eh?

Morning all! Got my Onc apt today so let's see what fucking delights this new week brings

Thanks Wot. I really hope you have nothing to worry about but I know the waiting to find out either way is awful as you automatically assume the worst

Good luck today Keepcalm! Some positive news would be lovely

Wouldn't it just @purpleunicorns but I think it'll be more of a chat re getting given the wrong dose of chemo

keepcalm Hope your appointment goes well today.

I would welcome some advice/opinions please? My chemo team have recommended that I opt for the in-line port. They say that as I am having once a week chemo I could opt to have it administered through my arm but they recommend the port. Has anyone chosen the vein option?

Meercat I am having my fortnightly Chemo via vein and it works well. My oncologist mentioned a port but suggested trying vein first as a port can cause problems. Good luck.

Sorry I am such a crap poster on here, my brain is fried so I find it hard to follow threads and my hair is starting to fall out which I'm finding hard to deal with. I should be at a conference for work right now which I was really looking forward to so all in all I am really low at the moment.

No personal experience but I believe ports are a lot less hassle.

Snowsinwater Sorry you are feeling low. I am finding it all hard to deal with too and I don't have to work at the same time unless I feel like it. Hope it gets better for you.

I have my pre-chemo information meeting later today so I will ask more about the pros and cons of the port

@meercat23 I had a PICC in my arm - NHS in my area wouldn't offer a port - and it was a godsend. If you have a port, it will save the veins in your arm/hand. I don't know about a port but my PICC was used for blood tests and for contrast when I had scans too. I got used to it pretty quickly and was so glad I had it.

If you've got a local Maggie's or any kind of cancer support centre it might be worth making contact. They offer all kinds of help, from benefits advice, counselling for you/carer and sometimes complimentary complementary :) treatments. I had reflexology/massage and podiatry treatments from mine. Macmillan also gave me one of their small cash grants and helped me to get PIP - you can contact them and ask them to do a 'holistic assessment'.

wotonearth, sorry to hear you don't have a resolution one way or another. Waiting and wondering is the worst. I hope you get some answers soon.

Hope everyone is doing ok today - exercising or not! I attempted some gardening yesterday. I put in 5 raspberry canes and a new blackberry bush before I had to give up. Pathetic.

In other news, it turns out that a dodgy gynae didn't remove my IUCD over 2 years ago so I've started an official NHS complaint. I only found out when I got a copy of a recent CT, saying it was there. Lying sod told me he'd removed it and wrote a letter to the GP saying the same. He also failed to diagnose fibroids and prescribed me meds that were an absolute no no with my BC diagnosis. I have a feeling this one might drag out a bit.