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 little sorry you're worried about your husband. You might get better advice starting your own thread as I don't think any of us here have thyroid cancer. You may also get more support and help from those caring for relatives with cancer as we are all the patients over here so can't help you with that either. But hopefully it will turn out to be nothing. Good luck.

Hello lovely lacies.
For those wondering where lacies came from, it's my doing
I am notorious for typos and seeing as it stuck our dear Leslie adopted it. Leslie, you're in a better place and we are forever in your debt
I was diagnosed in June 2015. I've had conservation surgery, chemo and rads( a lot of rads).
I'm on anastrazole after having taken tamoxifen for 6 months. I'm tolerating the anastrazole as well as could be, but I have lymphedema in my affected arm. It's under control, but not fun. I've had two bad experiences with infected in the arm so far.
I've had my share of drama as some of the golden oldies on here will recall, but I'm thankful for being stable and around for my DC.
mrs I am sorry I only just read back and saw you've asked about me. Thanks for that.
The lump on my collarbone was just a cyst, but there's never a dull day in my life now.
I just focus on my DC mostly, both teens now and an all new phase in our dealings.
I read you've passed the 5 year benchmark which is always a good sign. I hope your final mammogram is reassuring. How's the DD?
I am still trying to come to terms with the news re Leslie. I feel so bad for not being here the last few weeks. I so wanted her to know how special she is and how she will forever be remembered.
Waving frantically to amber, mysillydogand fresta..

That does sound worrying little I hope you get some reassurance soon and that it’s not anything sinister after all.

I’m off to another derm tomorrow for a second opinion as I’ve just got the strongest nagging feeling that something is seriously up with my moles. The one she pointed out looks worse the more I look at it and I’m worried about waiting weeks and weeks for a referral to come through. Luckily I have private healthcare through work so I’ve found someone who can see me tomorrow and I think if they agree they need to come off for biopsy I will try and get it done quickly if my cover will let me.

So it’s back to being convinced I have the absolute worst case scenario again. Constant heart racing anxiety. Hands shaking. Terrible terrible thoughts. It’s such a hard thing to deal with.

Hope everyone is holding up okay.

Roar - breathe! Seriously, take some deep breathes. If you have health cover through work, see if you can get access to counselling.

In the meantime, try downloading Cognitive Behavioural Therapy for Dummies- it’s an awful title but I found it very helpful.

My mantra is “thoughts are powerful but they’re not real”

I’m glad you’re seeing someone about your mole soon, but in the meantime you need some coping strategies.

It’s a long way from “something looking a bit worrying” to the worst case, so please breathe

RawRoar I identify entirely with what you are feeling. Waiting without concrete results is very hard. I am glad you can see someone quickly and I hope that they will be able to be reassuring.

I’ll definitely take a look toofar thanks for the recommendation. I think it’s hard when your plunging gut instinct has turned out to be right before, when gps and all sorts said no but you knew it just was. Feeling better this evening though, calmer at least!

Thanks for the kindness meercat

RawRoar Good to hear of nifty healthcare being available. You may be pleased to hear that a recent big trial for even the most tricky metastatic melanoma has shown excellent four year results (and counting). It's another one they are converting to 'long term nuisance'.

Generalising:
Only about 1 in 10 moles they send off for investigation are melanoma. Lots of other moles are taken off but not even sent on, as they're clearly not a bother.
Only 1 in 10 of those sent off are a sort they are worried about treating. The other 9 in 10 are pretty easy to treat.
So your odds of it being a sort they put on the 'long term nuisance' treatments are about 1 in 100 right now.
Doesn't take the worry away, I know. But it gives you a bit of background.

amber

You hit my nail on the head with this:

More and more people are living with even the sort of cancer that won't go, as a long term nuisance, year after year of extra pretty normal life, rather than a reason to reach for a 'What Hearse' brochure (Summer edition). Annoying, unwanted, but fairly tamed.

I really like how you put that.

My cancer is incurable (well, the only curative treatment brings a distinct risk of death, so it’s only suggested when all other treatment paths have failed). So I hope to be with the drugs, the side effects and the 3 monthly testing regime for life.

But it’s not terminal (which is what people sometimes believe when they hear ‘incurable’ and ‘cancer’ in the same sentence. It’s a chronic but cope-able-with disease (if it stays treatable, that is), And with all the break-throughs in treatment, perhaps the concept of near-normal lifespan on meds will be a frequent outcome?

amber I can’t tell you how much your post helped to calm me down. Thank you. Kindness has to be one of the most underrated treasures of the world. Since my dc’s cancer diagnosis I have come to appreciate kindness as one of the very most important things in all the world.

That made more sense in my head than when I read it back

FFS I was in the middle of typing a long post to @RawRoar and lost it!

Long story short... a friend of mine was diagnosed with stage 4 melanoma 7 years ago. His prognosis was grim. He has now been NED (No Evidence of Disease) for two years and his Oncologist is very optimistic that he will have a normal life expectancy. He had immunotherapy. It’s been amazing

I normally hate these ‘oh my [insert name of distant friend/ relative etc] had cancer and now they run marathons every week’ stories but in this case I hope it’s helpful.

I wish I was as eloquent as Amber

I can safely say that I am intending to run no marathons whatsoever. Though I reserve the right to break out into a brisk walk in pursuit of a decent cup of tea.

IVampire, yes. An increasing number of people live pretty normal lifespans, on long term treatment. No perfect answers yet, but they're getting there.

RawRoar , that made sense. Glad the statistical rambling helped a bit.

Yes, people who bang on about running with/after cancer are perfect annoying twats and will be first up against the wall come the revolution!

Absolutely. Quite right too.

The only thing I've ever ran for is the ice cream man and I don't think I've done that since I was about 7

The evidence is strong and I am absolutely convinced that exercise helps all cancer patients, however running isn’t for everyone. I think the 5kmyway initiative by Parkrun is great, but will miss out people who are less physically fit. For me with a dodgy EF and a pleural effusion to even walk 5k would take an hour and leave me exhausted and unable to function for a few days. Yet 2 or 3k is doable because that would be a 30 minute walk in the fresh air. Of course many cancer patients can run 5k, particularly in they exercised previously, but that’s rather like preaching to the converted. Parkrun say less fit people can join in by volunteering or cheering the runners, but that doesn’t address the fact that less fit people should also be exercising, just at an appropriate level.
This isn’t about Parkrun who we must remember are all volunteers, it’s a general point that there is a massive gap between the manageable level of physio led exercise available in hospitals and exercise classes in the community. I went to a beginners Pilates course a few years ago where everyone else could plank etc and I could barely get off the mat.

You’re all lovely. Thank you. The wait for test results begins now. Strange one because it’s likely to either be very good news (false alarm) or very bad (worst variant of mm going). So that’s a nice bit of jeopardy!

Keeping myself busy now and trying to stay positive until I know what I’m dealing with.

Hope everyone’s having a good weekend.

My Silly Dog

I agree with you about exercise gap. I wasn’t a bad runner before my diagnosis. Now radiotherapy has finished I decided to go to my local park run. I’ve been in the last 10 of about 280 runners for the 2 weeks I’ve done it and I was pretty fit when I was diagnosed last July. There does need to be something that starts off more slowly or is more adapted to people who for whatever reason will never manage to build up to run/walk 5 k. I don’t know what that could be though. The park run concept has taken off because it’s simple and you don’t need people with any particular training to run the race. There are few costs involved as park is free and people who run it are volunteers.

I volunteer at Parkrun and for Walk4Life and we’re thinking about taking those from the latter to the former. Probably a nearby event which I’d pretty flat and has 3 laps, so people can easily drop out part way (near the cafe) if it’s too much, and with extra volunteers to support if necessary,

Taking over an hour is totally normal at Parkrun, and walkers are genuinely welcome.

But I think exercising for an hour is too much for many people, particularly those with metastatic cancer, heart disease or poor fitness. The laps which people can drop out makes a lot of sense.

I haven’t heard of Walk4Life. That sounds good. The thing with park run is they say you can walk (and they do genuinely mean it) but in the main it’s fairly fit runners for whom things like personal bests are important. I’ve found 5k quite tough even though I’m walking much of it.

Exercise is good for you - of course. But I simply can't manage to do very much and it upsets me and makes me feel a failure. I used to be fit and active, I walked my dog every day and I did a dance class every week. I walk on my own now because everybody else is faster than me and they walk ahead without realising it and then have to stop and wait for me to catch up. I walked for 1.5 hours the other day and then spent 2 days recovering.

Please don't tell me "oh but you can do xyz..." I do what I can, when I can and I'm very happy that others are capable of doing more.

I'd love to take up exercise again, but I'm apprehensive about anything that might stress my vertebrae (a site of mets), as I could end up paralysed by spinal compression. I'm not convinced that doctors or gymbods necessarily know enough to reassure me.