Cancer Support Thread 85 - Hoping for a positive 2023

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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.

Sorry you're feeling so down. What film do you think you'll watch? X

I don’t know none of them seem to be happy do they?😂😂

im really just feeling sorry for myself. I think it’s because my brother has moved back home and I’ve got no one to fetch and carry for. I just be glad nit having his tea on the table mustve appealed to my maternal side😀 I’m really busy next week and have loads of treats so I must stop wallowing.

Ps is it normal to have loads of dark bloody snot when you have a good cry?

@EachandEveryone i’ve had loads of dark bloody snot, the doctor said only to worry if I had nosebleeds that went on for a while

@EachandEveryone sorry you are a bit down. It’s hard coming to terms with the uncertainty of life after cancer treatment. There are lots of programmes to help with it but it’s just hard to accept it all.
My film recommendation would be Jessica Watson True Spirit on Netflix. It’s life affirming and fun with a bit of peril too. Teenage girl sails solo round the world.
I am over at DMs house being talked to death by her retired cleaner who has dropped in to chat. I may kill her if she doesn’t shut up. Think of me.

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@TopOfTheCliff Thank you, this is very good advice. My breasts are both 'all lumps' (& always have been) & I've only had 1 period in 6m now but I guess I just check monthly & see if I can feel anything 'new'. Im hoping to restart my HRT if my genetic screening comes back all clear too so I'll see how I settle in a few months as that may affect them too. Thank you for your kindness whilst I've been worrying x

@EachandEveryone I’ve been crying all morning and have tons of bloody snot, came here to ask if that was a “thing” and saw you had beaten me to it!

Aw I hope you are feeling better this evening. I went for a free massage at my local hospital today it was lovely. Do you have anything like that local? Ive had a lump in my throat all day today I think im imagining it and its something to do with all the crying. I hope im not getting a cold.

Well I’m two down, three to go on the radiotherapy course this week. It was a bit brutal today when I walked in. No changing room just three men in their thirties with the big machine. They greeted me and said “strip to the waist and climb up here!” So I did. When I left I had to go and find a quiet corner to apply the moisturiser and steady my nerves 😂 I actually quite enjoy the whole thing and am proud of my breath holding. It’s certainly one of the easier parts of the cancer triathlon for me.

@Atreus how is the sitting still going?

I hope the rest of you are staying sane. “All is well and all will be well” as my lovely yoga teacher has us chanting.

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@TopOfTheCliff thank you for checking in on me! Erm...as for taking it easy, I really am trying and I did spend the first week post-op literally doing nothing other than eat mini-eggs. My scars are healing well and I feel good so this week I have started walking again though not any significant distances. I am a huge walker, it's the thing that keeps me sane and so I figured the positives of getting outside and getting a little exercise and some mental stillness whilst I wait for the next set of biopsy results would outweigh any negatives.

I can feel some cording start to develop though following the sentinel node biopsy. My upper arm and wrist feel tight so I've been Googling some physio exercises...has anyone else had this and found any exercise/stretch better than any other?

Hope everyone else is doing ok.

That sounds overall positive @Atreus. Beware of the mini-eggs though. I broke my tooth on one last week and now have titanium pins in my molar!
Cording is very strange and poorly understood. It seems to be a hardening of the lymph channels along the arm or trunk, and can be snapped by stretching and massaging it. I had a little of it from elbow to shoulder but doing the exercises with my arm above my head it pinged and went away. Weird!

I’ve just been up to the allotment to get a bed ready for broad beans. I could only manage ten minutes of digging before I was flaked out. Now home with tea and biscuits.
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When I had cording I did the lymphoedema exercises I found online which were a bit like swimming strokes with your arms to the front of you. I got fed up with cording and really pushed it with exercise and it snapped and was better. It did feel quite risky but paid off.

Hope everyone is doing OK and sending love and hugs to those who aren't. I just have reconstruction to go and the lovely Tamoxifen. I am swimming a lot, swam 100 lengths yesterday and 68 today and feeling fairly fit now. DS is able to walk again now which is great and home 4 days out of 7 and now under a professor at the Maudsley. He's apparently quite famous and there were 3 staff just in to watch like a fan club of his. He said I could challenge his view but when I did he said he couldn't work with me if I disagreed with him. 😂All got sorted but reminded me of the senior men I used to work with who would behave in same way though bizarrely next day they all come back wanting to work very closely. Off to Azores soon to a spa hotel for my 50th. I have never been that bothered about birthdays but cancer makes you think better do things now if you can.

The gift that keeps on giving, not only have I got no iron reserves, my vitamin d levels are 15 as opposed to 50. GP reckons it’s from the radiotherapy.

I enjoyed Triangle of Sadness @EachandEveryone I fell asleep in Everything Everywhere all at Once. It was too confusing for my poor brain. Might try again

Urgh! I’m one week past my third EC and usually I’ve bounced back to some level of normality by now but I had to take three injections earlier in the week and I’m wondering if they’ve added to knocking me off my feet. I can hardly get out of bed.
I stupidly did the Predict tool test online too. All my positivity has gone.
I hope others are coping well at whatever point of treatment. X

@Whattodotomorrow Don't forget there can also be a cumulative effect of chemo so you might be feeling the burden of having had repeat sessions. I was at that same stage of my chemo 2yrs ago - it seemed to go so slowly 😒

I start my third cycle on Monday but the doc just called to say i have a very low pottasium and need more bloods and to take some tablets. I hope it can start as Ive felt ok with it.

Sorry to hear of the chemo woes @Whattodotomorrow keep drinking plenty and rest up. The positivity comes and goes. Just keep telling yourself “All is well and All will be well!” Like my yoga teacher says.
@EachandEveryone there is potassium in bananas and tomatoes. Hope that helps.

I’ve got just one more radiotherapy treatment to go. It’s been very efficient apart from the parking as they have building work in the car park. Today a lovely traffic officer showed me some secret spaces and even jokily offered to carry me as I was limping towards the door to the Unit. I am feeling quite shattered which is the cumulative effect I think. Luckily I have nothing demanding planned for a few days. I’m not going to celebrate finishing as I still have to do the oral chemotherapy for six months. Too soon!

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Thank you…I’ve finally got and up and managed the school run yesterday. Had to have a nap afterwards but it’s a step in the right direction. My positivity is returning too…as is better sleep. With hindsight I think it must be the steroid slump that hits me.

I hope you don’t mind me asking @TopOfTheCliff but I remember you saying that you had breast cancer before very recently (I remember thinking how bloody unlucky) and I was under the impression that radiotherapy can only be done the once. Is this the case or did your previous treatment plan not need it? I hope today’s round isn’t too uncomfortable and the end is in sight.
@EachandEveryone i hope your treatment goes ahead as planned. My third round was delayed and I can remember the relief and frustration mix!

@Whattodotomorrow my treatment in 2020/21 was for right sided BC and this time 2022/23 it has been left sided BC. Different types, triple positive then triple negative (both uncommon in older white women)
I’ve had FECT chemo and Herceptin, surgery (lumpectomy and total node clearance), and radiotherapy, Zolendronic acid and anastrozole/exemestane then started again with EC-P chemo, another lumpectomy and sentinel node biopsy, radiotherapy and now for good luck I’m going to do 8 rounds of Capecitabine. I am fat, exhausted and depleted at the moment but I haven’t missed a single dose or had a reduction, and they tell me it has been successful so far. I am bloody amazing!
I am now going to take a month off cancer treatment and try to get fitter slimmer and catch up on some jobs before the last lap.
All I can say to those of you struggling with the treatment is keep going! It does come to an end eventually and you will be glad you persevered.
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Wow…that is tough. And that’s just physical, I can’t imagine the mental rollercoaster you must have been on. How on earth have you managed to keep the ‘you’?
Hope everyone else is doing ok. I was sweating under my wooly hat yesterday in the park so I’m going to have to investigate my ‘spring’ school run look! I’ve managed to get away without many people realising so far!

Wow @TopOfTheCliff that certainly puts things into perspective, no wonder you’re exhausted.
I have one more week of paclitaxel and pembrolizumab then moving onto EC 3 weekly, possibly also with pem, it’s not entirely clear. How did everyone get on with EC? I know everyone is different but would be good to hear some experiences.
my mission for this week is to stop the inexorable decline in my magnesium levels. Dd1 said sorrowfully ‘it’s a lost cause mum’ which made me laugh. We’re all a bit over-invested in the magnesium given everything else that’s falling apart.

I had my first lot of EC yesterday. It was tough going and I feel pretty rubbish today. I didn't eat enough yesterday which didn't help.

My experience of EC is that it is like a massive hangover for a couple of days. The steroids give you insane energy and cause impulse purchasing at 2am on Amazon then when you come off them you feel desolate. The bone injections to prevent neutropenia are vile and may cause a lot of bone pain if you are unlucky like me. The EC strips your gut and gives you a sore mouth and bottom with diarrhoea. It also causes your hair to fall out around day 18. I never bothered with the cold capping but I believe it works for some to retain hair.
Although this sounds dreadful by 14 days in you will be feeling much better and whether you are on the two or three weekly regime it is manageable and you will get through. Best tips are to keep drinking plenty of fluids and have a stash of both Laxido and Imodium. The laxative powder is best taken like a shot and knocked back quickly as it tastes vile. The E is the Red Devil which can affect your heart and make you breathless but this is temporary thankfully.
The good news is that these drugs work really well on aggressive tumours and you can feel them shrinking within weeks of starting.
@bringonyourwreckingball I don’t think I ever had my Magnesium levels checked. Was it because you were unwell? Ignorance is bliss I suppose.

Sending strength to all
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My hair’s already gone so that’s one less thing to worry about and the bone injections have been ok so far. The rest sounds fairly similar to the paclitaxel, perhaps on a slightly different schedule.
i don’t know why they are checking the magnesium, might be because of the immunotherapy? Hard to tell if I have any symptoms given everything else I have going on.
I think my tumour has shrunk quite a bit already, I can’t feel it any more. MRI at the end of the month will hopefully confirm that.