Cancer Support Thread 85 - Hoping for a positive 2023

[AGreatUsername]

Starting a new thread as the old one is almost full.

Welcome one and all, this is a thread for those with cancer and those who are awaiting tests for cancer. We offer support, a place to rant/vent/cry and ask questions without judgement. As always maybe we can do a quick who’s who at the start of this thread for newbies.

Heres hoping for a positive 2023 for us all.

Hi @Freakingflies, I too lurked for ages before joining. I think I didn’t want to think too much about my own cancer diagnosis, let alone read everyone else’s stories. But I’m glad I’m here, even if I do dip in and out. As@TopOfTheCliff says, I suspect all of us here can relate to both the ‘tired of it’ sentiment and the rage you are feeling. Good luck on your journey, you’ll find lots of advice and support here.

A rage room! That would be marvellous!! God, I could do with smashing a few things right now.

Yes, I’ll have a bit of time before the iodine. I think the idea is that I have to be completely recovered from the operation. Speaking to the nurse this morning, I think it will be about April when I get booked in

And thank you for letting me rant earlier. I actually a little better for putting it out there

I threw a cup on the floor in anger yesterday, and completely smashed it. I'm not proud of myself. Never done that before in my life.

@ajandjjmum I did a similar thing recently, with a plate. Not proud of it either and so out of character for me but I was just so, so ANGRY.

I think we are onto something here. Perhaps the Patience Inn, beloved wayside refuge of the Cancer Threads of old, could reopen under new management with a Coffee shop, delicious pastries and a Rage Room. It will need a new name though.

Hello

I have a question for those us who are able to use the gym. I have now got a picc line and want to join the gym but worried about getting the arm sleeve which covers the line wet from sweat.

Can anyone recommend any low intensity exercises that I can manage without getting all sweaty? I can't do yoga as still got aches and pain where I had my reconstruction. I also try to walk on a daily basis but I feel the steroids are making me put on so much weight so walking is not helping much tbf.

Thanks

Apologies for the spacing.

Re: gym - the only exercise I did during chemo was walking, I couldn't have coped with anything else, plus I was bald. I joined the gym a couple of weeks after I had my PICC out and wore a hat but I got SO hot in it.

You could try faster walking or wall yoga. There's also lots of online things you could do, Davina has a fitness website.

@Makemineadecafplease I have only exercised outside since I got my picc line as I like running and spin classes (still sweaty outside but nowhere near as much as I would be on a treadmill or bike inside!) and use a plastic arm sleeve they gave me for showers - I haven’t had any issues, so if you were doing something at a lower intensity indoors you might be okay doing that too?

Re exercise I can really recommend carolyn garritt… www.oomph.london she is a cancer rehab specialist and had short videos in her website/ instagram.

My experience with a PICC was mixed. I was able to cycle and walk and could have used cardio trainers in the gym but rowing or kayaking were out. If I used my upper body I got a small bleed around the PICC site. Weights would have been similar. I guess aerobic exercise would have been okay. Sweat wouldn’t matter you could just use a wet wipe on your arm.
With the port I could do everything including aquarobics and light weights. I still lost all my fitness due to chemotherapy though. Now starting the long slog back to fitness.

Thank you to everyone for the replies, I will take them onboard. I hope it's a bit sunny where you all are and are managing to have a good day.

I had my bloods done today. My third chemo is on Friday and the nurse said I should be having more side affects by now!! Bloody hell, I have a sore mouth and can’t sleep on a night or on a day. Now she’s worried me that it won’t be working if my hairs not fallen out yet!!

@EachandEveryone - well that's a silly thing to say as everyone is different, and some people dodge certain side effects altogether. And it's not like you haven't got any at all. She was probably just chatting aimlessly - don't let it worry you. I'm feeling slightly bemused myself today as I'm on my 5th round of chemo and have never had bone pain from the filgrastim injections before and then suddenly last night my pelvis was extremely painful for a few hours. Why now? Why not before? Who knows!

Hi all. Hope it's OK to post about family when I don't have cancer myself - I don't want to invade your space (ignore the below and tell me to go away if so!).

My Mum has stage 4 lung cancer with mets to her spine and some lymph nodes. Diagnosed a couple of years ago, and has remained reasonably stable since (minus the awful effects of chemo, weight loss - it's affected her QoL horribly so don't want to sound like I'm minimising that). She's quite young (60s), and was healthy and active previously.

She's having a break from chemo at the moment, and is considering immunotherapy, although the tests done when she was first diagnosed suggested she wasn't a great candidate.

One of her lymph node tumours has been increasingly problematic over the last few months, and is pressing more and more on her oesophagus. Sometimes she can't swallow even water, and her weight is dropping a further as she's pretty much living on nutrional drinks.

An ENT has suggested 'trying' to put in a stent to help her swallow, which she's worried about due to potential side effects. I'm really hoping she goes for it and is able to be a bit more comfortable.

I want to help her, but she lives 100s of miles away and it's difficult visiting for many reasons.

Not really sure what my question is to you all, but it would be good to know if anyone's had a similar intervention, or seen it done, and thought it was worthwhile? I'm also starting to worry that this is the beginning of the end (and if not, the thought of her being tube fed is awful - she's very proud). Is there any way back for her from this or will it be more suffering?

@cancerisgrim My ex has non small cell lung cancer. He was a heavy smoker. He had immunotherapy which was successful and he's leading a relatively normal life atm five years on. His tumours have shrunk massively. It will depend what type of cancer and where it's spread. I can't help with regard to the stent. I hope someone can. Your username is apt!

Has anyone been told by a surgeon they my have lymphedema after lymph node removal?

@cancerisgrim sorry to hear about your mum. Have you thought of ringing Macmillan Cancer Support? They know all about this sort of thing. There is a thread for those with parents with cancer on the Life Limiting Illness Forum. This one is really for those of us who might have/ do have/used to have Cancer.

@Hi01 I had a swollen arm last summer in the heat post axillary node clearance. The BCN used a magic gun to measure something and pronounce it was just post surgical swelling not lymphoedema. It went away with rest.

I am being very good and resting since surgery for cancer no 2 but managed to walk 1.5 km today. Each day I go a little further from my house. It makes me feel positive to be doing something.

Thank you my dear, I will post in that thread too. x

Hi all - so sorry for anyone who’s having bad news or a hard time.

Can anyone recommend anything for sore nostrils? Between that and the sore mouth I’m having trouble breathing at night which isn’t helping with the insomnia.

On the plus side I feel so unwell from the chemo I keep forgetting to worry about the actual cancer

@Hi01 I developed lymphoedema, but I had all of my lymph nodes removed on my right hand side. It is a pita tbh, my right arm is significantly larger than my left and achy, I wear a sleeve during the day as long as I can tolerate it (it is 32 degrees here today so I took it off after a few hours as it drives me mad in the heat, when the weather is cool I can usually manage to keep it on until bedtime) and I have a compression pump I use for an hour every day plus monthly therapy sessions that cost me &150! As my doctors keep telling me though if anyone was going to get it I would because of the severity of my treatment so hopefully you will avoid. Do make sure you do any exercises that are suggested though and swimming is good for keeping things moving.

Am struggling.
not sure if this is right thread.
For those unfamiliar with my story, my DH died in July 2021 following a fairly short horrible run with pancreatic cancer. In October 2021, I was diagnosed with breast cancer, in November 2021 my DFIL died from lung cancer, I had two surgeries, 8 chemotherapy sessions and 15 radiotherapy sessions, active treatment finished in July 2022, my DF died in June 2022. ( my lovely wee cat died in between times).
It’s been a tough time.
I have 2 amazing DDs who obviously have gone through all of this with me, while sitting their exams.
My elder DD has now gone away to Uni and is struggling herself a bit. She phoned me last night/ this morning about 1.30 and was sad and wanted to talk.
In the midst of the conversation she asked me how do YOU carry on.
I have been thinking about it the rest of the night. Not so much the how, in a way that’s easy, one foot in front of the other, washing, cleaning,cooking work etc.
What I’m thinking now is why do I keep carrying on? What shit has life maybe got in store for me next?
I know this is self pity talking, but not sure how to move out from under it.
Sorry for long post.
Reading this thread makes me realise the tough times we all go through, and my cancer story, so far is positive but still I am stuck in the why?

ive been abandoned totally by my gp despite being registered since 1970. i have had no contactdespite urgent referrals etc from oncologist. tried to access meds nothing. had to get some straight from hospital pharmacy 14 miles away. im in a desperate way now waiting for phone calls that are scheduled but never come. been awake for nearly a week due to high steroid dose, cant even catnap.

@thereisonlyoneofme . I'm so sorry -that is awful. You sound like you need someone to advocate for you with your GP. Is there anyone you can speak to at the hospital who might help?

@Podgedodge I don't know if this is helpful or not, but I am having counselling at the moment and had a somewhat similar conversation with my counsellor this week. It's not on the scale of your loss, but my own cancer diagnosis comes after an awful run of bad things happening in succession in my life - my DM died of cancer in 2019, my DH was diagnosed with early onset PD in 2020, I got made redundant, I had to take on caring responsibilities for two elderly relatives who both died in quick succession in the early part of this year. When I got cancer I first thought 'it can't possibly be - surely I'm due some good luck'. But then I started thinking 'of course I've got cancer - everything bad that might happen is bound to happen'.

Anyway - my counsellor encouraged me to think back to other times in my life when I had lost hope, or felt locked in a negative run of events. And then to think about what had helped me to recover the capacity for hope after that. I've never had anything on the scale of this before, but there have been difficult times, and it did help me to think about what helped me to recover, and how I might apply that to my present. I hope that doesn't sound too blithe - I know it must be much harder without your DH by your side.