Cancer support thread #77 - newbies welcome

[InOtterNews]

I couldn't see new thread so here we go...

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh)

@HumphreysCorner a few of us have had to do that. There are quite a few different drugs out there but they hold back the stronger ones to see how you get on and which problems you have. I'm also felling pretty fed up with feeling unwell. Have to just keep in mind that it will pass - hard when you're right in it though. So much advice these days is about 'living in the present moment' - not these moments though! Need to look forward.

Thank you @Acinonyx2 x

Just catching up and noting recommended anti-emetic (ondansetron) to request, in the unlikely event that I get chemo today. I feel like this round hasn't been managed very well; just because I'd done Filgrastim injections for five days before my last, delayed, treatment, so that my neutrophils were very high when I did get chemo, they didn't prescribe them, so now they are very probably low again and I have the sodding mouth ulcers - and they didn't give me the more powerful mouthwash, either, which might have helped them clear up. I don't know if there's a way of them getting Filgrastim and Caphosol to me if I don't go to the hospital - maybe my GP can prescribe it (fat chance of getting through to them). Grr.
Sorry to see some people having a bad time post chemo, much sympathy to @HumphreysCorner, @Acinonyx2 and @HauntedDishcloth
@MrsPnut I hope your tumour is miniscule tomorrow!
Thinking of @InOtterNews, I do hope you're responding to treatment - whatever they can do for you. Also sending very good wishes to @BitOfFun, @Lubballoo, @TopOfTheCliff, @FizzyOrange, @LoveFall, @Lizdeflores, @Thymeout and all the gang.
@Trumpton I do think of you often too, any word on surgery yet?

@Bloodybridget that sounds a bit rubbish. Dr at the hospital phone consult a few weeks back had mouthwash delivered to my house the same day - I didn't know that was even possible! First port of call is always nurse here unless I have a scheduled phone consult. Can you call your nurse and urgently request stuff and see what they advise?

Seems to be a lot of variation on the injections. Maybe ask how this decision is made there - how do they decide to prescribe or not? If you're having chemo presumably your wbc has been checked as good to go though.

@Bloodybridget

If you can't get through to your GP, it might be worth ringing 111. I had a horrendous vertigo attack a few weeks ago. Never felt so ill in my life. My dd rang 111, triaged, a doc rang us back. He'd actually been able to access my records - which is a bit of a novelty. A prescription was sent to the local OoH pharmacy who would have delivered if my dd hadn't been able to collect it. Even got a phone call from GP's pharmaceutical nurse specialist the next day.

In the first wave, my colorectal CNS was working on Covid wards, since there was no elective surgery in my hospital, but I could get through to oncology via email.

Do hope you get something sorted asap.

Hello! Just checking in briefly to see how everyone is doing. @InOtterNews I am so sorry to hear about the latest development - I've got everything crossed that they get you sorted and out of there quickly, and that Covid doesn't take hold too much.

Sorry to hear about everyone else's experiences with chemo - it seems to be a bad month! I was completely knocked out by my second round. I think I'd become a bit blasé after my first round but this time I felt awful for a full two weeks. Just so, so exhausted. I am beginning to feel better now but I have round three on Friday. I don't think the exhaustion is helped by trying to cope with home schooling. DS is really not happy about it this time round and he has become v angry. It's all emotionally draining!

Thanks for suggestions, @Thymeout and @Acinonyx2. I didn't get a phone call so came to ward, waited a long time only to be told neutrophils and haemoglobin low, they are doing more bloods and I'm waiting for more Difflam and Caphosol (mouthwashes) to take home, also filgrastim injections. I might need a transfusion, eek, never had one before. God, I'm fed up.
I also managed to drop my phone in the car when DP's son dropped me off; realised I didn't have it 15 minutes later, a kind woman let me use hers to contact DP, established it wasn't at home, thankfully was able to intercept DS just as he was driving away after doing a work meeting in the car . . It's not Friday 13th, is it?

@Bloodybridget how frustrating and depressing. Let's hope this gets you back on track soon. These derailments can be very disheartening (I certainly find them so). Not surprised you're fed up.

Perhaps we've all got chemo brain. I scuppered a nice walk when I missed my phone which I'd dropped in my own car. Today I felt a bit better and thought I'd be useful. Got loads of laundry out - but I trapped something in the machine door and flooded the kitchen. Now it won't work and just makes endless phantom washing noises. And my slippers are soggy

@Acinonyx2 what a flipping nuisance, soggy slippers are the last straw! Hope someone can persuade your wm to resume service. Tip: stop trying to be useful, it won't end well. I cooked supper last night and managed to burn the spinach.

@Acinonyx2 name change to SoggySlippers I suggest. Bloody technology, meant to help and lets us down.

Glad you got your phone @Bloodybridget. I realized what a life line it is when I'm stuck in bed or waiting. Blood transfusions rock. I felt like super woman after my last one. You sound like you're having a right nightmare.

@HumphreysCorner I was on ondansetron when I was pregnant. Foul pregnancy but it made me so much better. Hope you get something.

Gentle hugs to everyone going through hell at the moment. (Insert earth shattering positive comment here...) Otherwise, insert suitable swear word!

I'm a week post op. Bloody knackered. I'm falling asleep constantly and still too hot so clearly that's not related to the RCC. I've spent the day in bed. I'd like to say I look like a glamorous film star from the golden years, all propped up on frilly pillows, bed jacket on but I look more like a golden girl.

Could I join please. I have name changed for this. My darling husband has just been diagnosed with advanced prostate cancer. He got the results today. It’s not curable. It’s spread to his lymph nodes and bones but he is only 56. He is starting on hormone treatment and enzalutamide. Life expectancy is no more than 5 years and often less depending on how he reacts to treatment.

We had such plans. We are both still working. Has anyone got any useful links to any support. I feel like screaming out it’s not fair. Why us??

Oh God @Moonstone1234 that's awful!
Of course you should scream out it's not fair! This is the very place to vent your rage and fear and despair and share the things you can't say to your family.
None of us want too be here but it's a lovely place to be when you need to download or to find out stuff or just chat.
Generally people say don't Google because you will find random scary out of date stuff . Stick to Macmillan or NHS sites. But your husband's team will give you lots of information and come up with a treatment plan. Once you know that it will all seem much better.
Meanwhile look after yourself. Eat something and do things that make you feel better.
I went for a lovely walk on the estuary today with my friend and her dogs. It was magical!

@seizethecuttlefish you made me laugh a lot with your Golden Girl. Is your temperature okay? No covid symptoms I hope.

@InOtterNews I hope you are reading this and coming home soon. I'm worrying about you, random internet stranger!

I'm off for my radiotherapy planning session tomorrow. I'm still leaking gently from my armpit wound but nobody seems to care. So I'm not either.
Best wishes to all
Top

Thank you Top. I am raging and trying not to Google.

Yes, will look at Macmillan and NHS sites. I can just imagine what is out there.

I am just thinking of all the things we won’t be able to do. We had a Round the World trip booked for last year. I wish we had gone.

DH is ok, wants us to sort out our finances, wills etc so I guess that is good. Some people just don’t get that chance and we’re just about to.

I do like info though, I feel more in control when I know.

Still waiting for my breast appointment! Is it worth me ringing again?

@Moonstone1234 scream away! It's not bloody fair. Welcome to the group. I'm with you, knowledge is comfort for me.

I'm loving that your armpit is so ladylike @TopOfTheCliff and gently weeping. Hope the planning session goes well. No temp here. Mind you, until I lost one I had no clue how much sodding kidneys do. BP and temperature control being a couple of their lesser known charms.

@loubieloo4 I'd ring. What have you got to lose?

I have high hopes for getting out of bed today! The toddler is already up and intense conversations have taken place. He's happily watching tv thankfully. Anything that requires me to move at anything other than slow mo is a challenge.

@Moonstone1234 I'm so sorry about your husband. I hope @TopOfTheCliff and @seizethecuttlefish won't mind if I gently redirect you for MN support to the Still the storm thread in Life-limiting illness, which is for partners of people with advanced cancers. This thread is people with cancer ourselves, and while we are of course very aware of the impact on partners (and some of us also have sick partners/family members), we do need somewhere to talk about our own experiences.
Hoping for the best possible outcome for your DH.

@Moonstone1234 hello lovely, what a shock. Echo what the others say.💕

@seizethecuttlefish I have been given Onansetron and Dexamethasone so hoping that will help. Lol at your bed image, hope you feel brighter soon.

@loubieloo4 definitely keep ringing.

With having weekly chemo should I feel better for some of the days before the next session as I felt a bit brighter yesterday but today feel all shaky again.

Big wave 👋 to everyone else.

@Moonstone1234 That is indeed a terrible shock. You might want to consider some professional counselling via our hospital or Macmillan referral. If been the partner and the patient - some things will be harder for you as the partner.

@TopOfTheCliff leaky/poor healing wounds are something of a weakness of mine - do hope it settles down soon. Are you back cycling and knitting yet? I would normally be planning intensive gardening but that won't work I realise this year, especially with surgery in spring.

@seizethecuttlefish may your recovery be smooth as possible. My slippers are restored. Dh has mended the washing machine. He's terribly pleased with himself but it now makes a really alarming noise when spinning.....

I hate that my time is just draining down the plughole with nothing to show for it. So much time lolling about scrolling Netfliz etc. Taking all morning (or more...) to get up and dressed.

I do have a few things I'd like to get done and I'd feel better if I got something done. I just have so little mental or physical energy.

Also - I need to engage more with dd who is otherwise happily plugged into her devices. What if I die and all she remembers is me lolling half-asleep on the sofa watching crap?

I agreed to a small project when I was high on steroids last year and now I'm struggling to work on it It's theoretically doable - it seemed like such a great idea at the time....

'Man, I'm just tired and bored with myself'

Thank you all. I just feel like I am never going to feel normal again. I could take some time for treatment and recovery. It’s the fact that they cannot cure it and it will rob us of all our plans for the future.

Sorry @Bloodybridget and @iVampire if we have broken the rules of the thread welcoming @Moonstone1234 in her distress. I am sure that she will understand if there is a more appropriate place for her to post but I wouldn't want to turn anybody away in a crisis. I remember many years ago going to a Toddler group in a new city and being turned away with my 2 year old as they had a waiting list. I stood on the steps and sobbed!
Please don't leave the thread @iVampire your insights are valuable to us.
Today I got all togged up and drove myself proudly in to hospital for Radiotherapy planning. I got all the way to the CT machine before they decided I was still too swollen for them to tattoo me. Back home for a week as I suspected all along. I dived in to see the BCN on the way home to get some dressings and have a whinge and bless them they fitted me in and were lovely and reassuring. For the first time one said " We don't expect you to change your life, you will get back to all your normal activities. You will be cycling and sailing and working out in the gym if that's what you want to do". In non Covid times I would have hugged her but I just cried a bit instead.
@Acinonyx2 I totally get that you are bored with yourself. I am so bad at waiting patiently to get better I want to make something happen! On that note I am off to see a private physio to design a fitness programme I can follow to get back my life!
And stop wallowing! You're not going to die anytime soon you are going to be around to embarrass your DD long past her teenage years and she won't remember any of this except that she had lots of time off school.
Best wishes to all x Top

@TopOfTheCliff Wallowing interlude officially concluded - at least for today.

I tend to agree @Bloodybridget (who gave good direction) and @iVampire and also @TopOfTheCliff sentiments!

@TopOfTheCliff and others - all the previous cancer support threads since I joined in last year specified in the OP that they were for cancer patients ourselves, and asking partners and others to use other threads. Personally I think this is fine, and I hope the recent poster here understood from my response that I wasn't unsympathetic. I don't know what @iVampire said as her comments have been deleted.