Cancer Support Thread 96: It’s nearly Christmas - get the sprouts on.

[LemonDrizzle10]

New thread - old one nearly full!

Brilliant news @Poledra !

@Poledra HUGE congratulations. That must’ve felt amazing to hear those words.

@ememem84 I hope your first day at work went well !

Lovely news @Poledra congratulations.

@breastcancerpanic have you heard of 5k Your Way Move against Cancer?
It is a lovely campaign that is part of Parkrun and in several areas there is a run/ walk on the last Saturday of the month at the Parkrun. We have one in Torbay but there may be one near you. I have stumbled round at the back just doing 1k or 2k, even going round on crutches after my hip replacement. You have inspired me to go back again this month and beat my 5k walking time. It’s a slow business but the main thing is getting out there and giving it a go!

@TopOfTheCliff I had not heard about that, but it looks so good! I love the look of the videos etc - really looking forward to checking these out!

I love the look of the 5kyourway events, but I can't drive and I see that the nearest one to me is a drive away, whereas I can cycle (or used to be able to cycle...) to my nearest parkrun. My aim* is to complete a parkrun! I don't have a deadline as yet, and will just see when I'm closer to being ready. Progress is slow. Currently I am going on the treadmill and doing a total of 2.25km, broken up with walks, and the running pace is unbelievably slow. But I hope I will improve...

*That's my running aim. I also have a cycling aim, which is to complete a (very modest) family cycle ride that we used to do a lot. I tried a shorter cycle at the weekend and found it so hard! I don't think it's specifically strength that I have lost - it's like I've got really bad cardiovascular fitness now? I get out of breath and weary and feel like I'm the day after a half-marathon or something when all I've done is walk to the shops. I thought it might be anaemia so am trying taking an iron supplement, but I guess realistically it is just one of the post-chemo gifts?

Well I have my radiotherapy tattooes now, all three of them - perhaps in a bored moment I can play dot to dot - and my timetable. Annoyingly they're all in the afternoons which I had asked to avoid but never mind, it's only for 4 weeks.

I had an appointment with my breast surgeon yesterday which was not quite the formality I'd expected. He's not entirely happy with the breast shape and hardness of the tissue and asked how I felt about further surgery. The look on my face said it all really and we've agreed to wait until October which is almost 12 months since surgery and review it then. He mentioned that the radiotherapy might make further changes and that it would be best to leave everything to settle after that and then decide but he's confident he can improve it and make it less hard and more comfortable so I'll mull it over. He was also surprised that there is still bruising and lymphoedema, again he'll review in October.

I was slightly taken aback to be honest as I thought he'd go "oh that's great" and sign me off, but hey ho!

Hi, wondering if anyone has any experience of being offered alternatives to tattoo markings for RT?

I am going to be having 23 sessions for primary breast cancer after chemo ends (hopefully end June onwards.)

I have a visceral dislike of tattoos & permanent markings (apologies, no criticism of others' choices etc, entirely a me issue, irrational I know, not looking for discussion about it.)

I have read about alternatives used in RT but never heard of them being used. I am interested in exploring whether there are likely to be any other options outside trials or major centres.

Obviously I will ask but taking my custom elsewhere isn't feasible - our
local hospital is very much in the lower league, too close to cities to have the tech, cities too far away for me to schlep for daily RT for 5 weeks.

Context is that I have recently made a formal complaint about treatment from the oncology team and am conscious that I am likely to be seen as being a bloody difficult woman (which I am, to be fair.)

I haven’t heard of any alternatives and didn’t even think to ask tbh. None were offered either.

@SuboptimalSitu I think it does depend on your hospital. Mine didn't use tattoos at all. They used a mapping laser like thingy and lined you up exactly in that position each time.

Thanks @frostyfingers & @somewhereonthe517 I shall have to ask and see what they say! Good to hear that there are alternatives actually in use rather than just being trialled

I've just had my first 2 RT sessions. No tattoos have been used - but there is a pillow thing that they have kind of molded to me to put me in the same position each time - I guess it's the same kind of set up as @somewhereonthe517

Yes, same for me, no tattoos.

Has anyone else had a sort of jellyish covering over the area being treated? They spend a while putting a sort of large square thing on before treating - maybe like a blister plaster in consistency? I don't really know what this is for!

@breastcancerpanic I had a sort of flexible heavy blanket type thing laid over me. When I asked they said as I was flat on that side (delayed reconstruction) they put it over you to mimic breast tissue so you get a layer of protection to put the radio therapy exactly where it should be rather than too deep in you. It was a weird sensation!. It felt like metal and they used to lay it on my legs to warm it up whilst they got me set up. Hope RT is being kind to you x

@somewhereonthe517 yes - sounds like a similar thing - it is also where I am flat on that side, so guess it is for the same reason. RT has been fine so far but only 3 days in.
Hope everyone is doing okay on this bank holiday weekend.

How’s it going @breastcancerpanic ? you must be more than halfway through radiotherapy now.
I made it to Parkrun 5kyw and took a minute off my walking PB on Saturday. You are spot on about breathlessness the chemo really knackers your heart especially Red Devil or Herceptin. I had so much I’m close to the lifetime limit but I have slowly recovered and can cycle up steep hills again now 20 months on from my last dose. No permanent damage on the echocardiogram happily.
My fifth and third anniversaries of diagnosis are coming up this month. I think I shall celebrate!

@TopOfTheCliff That's brilliant about a new walking PB! Another thing to celebrate along with your anniversaries?!
I had the red devil and didn't know it knackered your heart. I find myself with burning legs and breathing deeply with exercise that would have barely registered before. I do think I am slowly improving though in some ways... we are doing a 13.5km cycle route (slowly) which is starting to feel easier. Not sure whether running is improving though - the pattern seems to be 5 minutes of very slow running followed by a walking break and then a few even shorter bits. You're inspiring me to keep trying though!
I had 8/15 RT today. So far RT seems totally fine, but they did say that tiredness would begin halfway through and peak two weeks after I finished, so obviously the side-effects are yet to kick in, and I can expect to go backwards rather than forwards for a while.
Am thinking that once RT is finished, I will migrate over to the great recovery thread - is that the right time to move? I've started the hormone treatment (anastrazole) but that lasts for 10 years, and I'll also have 6th monthly infusions of bisphonates (or whatever they are called), but I'm guessing these things don't count as 'active' treatment?

@breastcancerpanic it sounds as though you are doing amazingly well considering you are still in the middle of RT. I have learned that it is best to be gentle with yourself and not to push too hard. This goes against my natural inclination to beast myself and spend days recovering 😂
The Great Recovery thread is a state of mind as much as anything. You know when you are ready because you start thinking about life after treatment and what it will be like. I set it up just before I finished my post cancer course of Capecitabine when I was at a pretty low ebb in 2023. It is a space for those of us reeling punch drunk into the daylight saying “WTF just happened to me!” 😂

There are some great links we have collected including the classic Peter Harvey essay on recovery. Take a look:
https://www.mumsnet.com/talk/general_health/5270506-the-great-recovery-part-4?page=1

I think it is helpful to have a separate thread as this one Is at its best for the newly diagnosed and those going through active treatment who want a hand hold in the middle of the night and people who understand. Having said that it is always nice to hear from those at different stages as it reminds us that things will get better if we hang on in there ( or at least change!)

I'm over my last chemo, yay! I start RT on Wednesday, first of 20 sessions - annoyingly 8 are an hour's drive away but hopefully the remainder will be at my local hospital which is only 20 minutes. I've had lots of offers of driving me but I'm really hoping that I can manage. I'm beginning to see the light at the end of the tunnel now, I have a haircut booked for a couple of weeks - the cold capping though vile really worked for me and my hair has thinned a bit and is a bit brittle but I didn't lose much at all and only people who knew me well noticed any change.

The relief of the end being in sight for me is rather spoilt by poor DH's ongoing chemo, he's on 10 of 12 with another scan likely after that to see if the tumour has shrunk enough for surgery. He's coping really well but it is relentless, he had his 1st chemo on 8th January and bar a couple of delays it's been every two weeks since then, plus all the faffing about with prescriptions and blood tests. In many ways I have got off lightly.

I may wander over to the great recovery thread soon, it feels like tempting fate at the moment, but to even be thinking about it seems surreal.

This thread has helped me get through some truly awful times, everyone has been unfailingly encouraging, helpful and sympathetic and I hope that anyone in the darkest place of having a cancer diagnosis in the future finds themselves here.

That’s bloody brilliant on your chemo being over @frostyfingers I recall the start of all this for you and those terrible dark days. Everything crossed for your dh too over his last treatments and that his tumour has shrunk. I hope you both can have some better times together. 💐

Everything crossed for your dh @frostyfingers - that he manages the last chemo sessions okay and that he gets good news on the scan.

So glad that you have come through the final chemo. So great to have it in the past!

I will also wander over to the great recovery thread. I remember the terror and disbelief of diagnosis and came here in a total panic (as my username shows!). I got so much support here - I'm so very grateful. I think I'm now in a different frame of mind - sad about things that have changed (missing breast! missing hair! fitness nosedived! work in pieces!), but not in a state of dread anymore, and looking forward to things getting better rather than worse. So I guess I am in a recovery state-of-mind even though I still have some RT sessions to go.

You’ve phrased that beautifully @breastcancerpanic I feel exactly the same and get a bit maudlin considering mortality etc. I’ll see you over there.

@frostyfingers Huge congratulation to you on completing your chemo. Bloody well done you !
Hoping your DH gets through his last couple well and has some positive results.

Those of you that are managing some exercise, kudos to you.

I realise I’m a couple of weeks late responding but that’s amazing news. Hope it’s going well and you’re not overdoing it 💐

It is going well thank you @gillybean2 i don’t think I’m overdoing it.

but came home today with a stonking headache. Put it down to sitting up properly in my work chair, different lighting, new glasses, air con….and actually using my brain.

How is the RT going, @frostyfingers ? Are you managing to drive yourself? Mine starts tomorrow (15 days), also a fair drive away but the private healthcare means they send a taxi for me! Hope your DH's remaining chemo sessions go OK.

Has anyone had the zoledronic acid infusions? How did they make you feel? I've got that scheduled on Wednesday morning, along with Herceptin, the radio in the afternoon so I'm just wondering how knackered I'm going to be!

It's a lovely sunny Sunday where I am - hope it's the same for all of you!