Cancer Support thread 86 - Stay Positive

[LemonDrizzle10]

New thread as other one nearly full.

Morning All

I haven't slept much last night- hospital explained yesterday that I was having a massive steroid crash after first chemo last Friday. I've got a phone appointment with oncologist at 10am - feel so rubbish about not being able to cope with all this.
I need a massive hand hold.

I'm really sorry you're feeling so rubbish. At least you're able to speak to your Oncologist quickly about it - and hope that he can offer some help.

Sending love and best wishes.

@ajandjjmum thank you. I feel so alone with all this, it's really really hard. The thought of feeling like this for months is too much.

Was that just your first treatment? How many steroids are you on is it the three day one? I’ve started to get up at about 6am take mine I really hate them. Now my chemo is in the afternoon il literally up all night. I’ve put on so much weight as well, what are they doing to you? Let my know what your doctor says.

my gp randomly put me on Ovestin pessaries yesterday she said I might as well to stop the atrophy. She also took my insurance form away Sadler I’d filled it in for her only needed a stamp and signature. This annoyed me because everyone else has just signed for my other claims without even looking. Now there’s a delay in posting it and I’ll also have to pay them money about £45 when the others have told me I’m not to pay for anything. Does anyone else have payment protection room insurance? I’ve had it years never remembered paying it as it was only £23. I’m on full nhs pay but the unsocial hours have dropped me by £500 it’s a lot of money especially on your own.

@thesandwich thanks for the suggestions- I will have a look at the maggies thing.

@Gilead sorry you got such an awful reaction from your daughter. Congratulations on your clear scan!

@TopOfTheCliff I saw I'm sorry I haven't a clue a good few years back. I only listen to it occasionally but it was fantastic in person and hilarious playing the kazoo! Glad you enjoyed it - sometimes having good laugh is what we need.

@LemonDrizzle10 good luck for your onc appt and a massive handhold from me. It's ok to not feel you can cope and to have down days - it won't always be like this. Yesterday I just woke up crying for no good reason and everything, even getting washed was too hard. Today I dont feel as bad - nothing has changed so who knows why.

I have an onc appt this afternoon and it's the big one - is there any further treatment or is this it. The likelihood is that there aren't any options but he may have decided to try something random. I am scared but will have my sister with me who will be strong ( and fall apart later) and at least I won't be in this limbo land of not knowing. And then I get to go home from the hospice tomorrow 😊 where the poor old cat is missing me 😂 sending much love to all who need it xx

@EachandEveryone I had critical illness insurance, not sure if that is similar? It was a lump sum not an income protection policy. But it was a nightmare. Put the claim in in May, insurance company wouldn’t process until I had been staged following surgery and then the GP caused a massive delay. We struggled for months and it eventually went through after I’d already returned to work as I couldn’t afford to stay off longer. So annoying. The GP have been the most annoying of the lot.

I have Cholangiocarcinoma, one of the rare ones, and had a liver section last year. This was followed up with chemo which affected me quite badly. Then I broke my ankle and was told the breaks weren't healing and this was probably due to the chemo so I came off it for a few months. I gradually felt more my old myself and my family saw a huge difference in me, both mentally and physically.

I've decided not to continue with chemo and I'm fully aware that this will mean my life expectancy is going to be considerably less without treatment. I've decided I'd rather be 'myself' for a shorter time than the person I was on chemo for longer.

I had a meeting with my whole team and my oncologist has been totally understanding, as have my grown up family and my husband.

I will still have all the usual tests and scans and follow-up meetings with my oncologist to monitor my cancer and I will have palliative care when this becomes necessary.

Has anyone else made the decision to cease treatment? I'm certainly not recommending this, it's a deeply personal decision to have to make and has myriad reasons that need to be factored in. In my case this included my age, 72, and the fact that our children are all grown up with homes/children of their own and support my decision.

I'm not brave and I've never considered my cancer to be an enemy to be defeated. For me, cancer cells are just cells that have been damaged and lost part of their dna and are huddled together to survive because they don't know any better. Am I strange for feeling this way?

Sending love and best wishes to everyone coping (but especially not coping) with their or their family's cancer journeys. x

@LemonDrizzle10 it’s perfectly normal and okay to feel like you do. Some days all you can do is get through hour by hour. I just listened to Chopin nocturnes and practised my breathing some days. But it doesn’t last and soon you will feel better and come back up again. You will be surprised at your own strength and resilience. Honestly it doesn’t stay as bad for long. Sending much love and strength to you. Don’t forgot the invisible army cheering you onward.

@Justanoldnana I totally understand your approach and love your gentle acceptance of the poor misguided cancer cells that have lost their way. There is a world of difference between going through radical curative treatment when you are young and have a lot to live for and turning down palliative treatment when it is affecting your quality of life and you know time is limited. The most important thing is to have supporters who can help you through this next stage of life with fun and love. I hope I can be as comfortable with the decision if I get to the point you are at.

@OrdinaryLife I hope you get the answer that you want this afternoon, and that you get home tomorrow. It’s good your sister is there for you.

Today I ventured back to an exercise class. I was touched by my classmates clapping me and even though I am fat and unfit and couldn’t do half of it I really felt so happy just to have gone along and proved I am still alive and kicking. I think I’ve earned a custard slice with my coffee today.

Love to all
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It seems we’re not doing very well collectively with positivity just now. But I think having a safe space to share the negative thoughts is important, given we have to put on a brave face to family and especially to our children such a lot of the time. Sending strength to everyone, especially @OrdinaryLife with your appointment today.

@LemonDrizzle10 , I did find chemo really affected my mood, especially EC around day 5/6. Quite aside from the tangible reasons for feeling low, obviously.

@TopOfTheCliff , thanks for your kind words yesterday about my hrt related meltdown, and hope you enjoyed your custard slice!

Does anyone else just get the wind knocked out of them sometimes with terror? I don’t know if it’s cos it’s CT week or what. I’m looking much more podgy round the belly after ten days of all inclusive eating, and I’m absolutely obsessed with it. Is it ascites? Is it a sign? Literally just showered after work and then had a ten minute breakdown where I couldn’t breathe at all and thought very dark thoughts indeed.

I can’t tell anyone. I can’t talk to anyone about it. It makes things weird. I’m so so alone with it. I don’t want to worry people, if I talk to my husband he then gets scared and everyone else just tells me it’ll be fine stay positive. The fear takes my breath away.

So, not a good day here either.

My sister has just told me she’s coming down with my nephew and the are arriving on my last day of chemo😯 I can hardly say no as no one from up north has been to visit. I know she won’t expect anything but I’m dreading the insomnia and the stress of the scan coming up. I’m thinking she can take him to Harry Potter on the bus and we can have a gentle walk along the canal from Camden. You never know. It might lift my spirit.

@AGreatUsername yep - I get overwhelmed with fear and flashbacks of the treatment. Oncologist told me to speak to GP to get anti-anxiety medication. Apparently I could do with chilling out a bit - easier said than done!

Sending lots of hugs and love to everyone that would like one.

@EachandEveryone i completely get that ambivalence about seeing people. I get bored and lonely and want to connect with friends but dread it too. Part of me just wants to hide away. Hope you can enjoy seeing them.

Bit of a random one but did anyone have their fingernails fall out during chemo? Several of mine seem to be headed that way. Chemo really is the gift that keeps on giving.

Not fall out but my finger nails are lifting and were very painful. They don’t hurt any more 5 weeks after my last treatment but do have visible dead skin underneath them. I think it’s common with taxanes. Hope yours hang on in there.

Thanks @dotty2 - reassuring to know they may not actually fall off. I’ve only got one dose of paclitaxel to go - I would say fingers crossed but that’s quite painful so maybe not!

@bringonyourwreckingball my big toe nails dropped off with paclitaxel but the rest hung on just looking a bit red and sore underneath the nail. Last time on FEC I had some pretty rings at the nail base like a tree trunk for each round of chemo but it didn’t happen with EC. Always something new to challenge us!

Yes I had a funny episode with toast crumbs this morning it was as if I’d inhaled them not big lumps choking me. It really scared me and luckily I had a pint of water to hand.

My hair thinned a lot after my liver resection but I was expecting it as it happened last time I had major surgery; apparently this is quite normal but a heads up would have been nice. I only had two sessions of chemo but the hair loss ramped up and now I'm very thin on top.

I can't decide whether to have my hair cut really short and 'fluff' it up to try and disguise the damage or leave it shoulder length and flat with a pathetic excuse for a fringe and brazen it out.

If anyone else has struggled with this I'd really appreciate some advice. I know that in the grand scheme of things this is just vanity talking but I'm not really a hat person so I'm struggling with the whole 'cut or don't cut' thing.

@Justanoldnana Have you heard of a hair topper? I think that's what they're called - they're like a mini wig for the top of the head. I haven't tried one myself but I saw a video of someone recently trying one & it worked marvellously.

My nails are sore too, and they look like they’re lifting off. The nail beds are thick and they feel like I’ve shut them in a door. DD shut my thumb in Where’s Spot this morning and I had tears in my eyes it hurt so much. It’s three weeks today since my last paclitaxel and doesn’t seem to be getting better. Having lost my hair and eyelashes and failed to take my first tamoxifen today because I’m too scared of it I wouldn’t be surprised if my nails fell out next and to be honest I can’t get any uglier so they may as well.

My fingernails are hurting so bad too, i cant see whats going on underneath as someone advised to color them black because that helped the pain. (Silly idea methinks but I did it anyways) It's my last chemo next week, not looking forward to it as docetaxel has really dealt with my body, the worst being my eyesight going blurry

Massive hugs to everyone.

Today the post radiotherapy fatigue has hit me like a bus. I had been happily building up exercise and doing odd jobs but this morning I could barely get out of bed. Luckily my only task today has been to babysit my friend’s boiler and let the heating engineer in for her. I hope it doesn’t go on too long. I am poleaxed!
Sending love to the suffering.
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Ah I've found you!

I've got stage 3 melanoma that has spread to my lymph nodes I have pre op on Wednesday, operation on 14th April but who knows now because of the junior dr strikes 🤷‍♀️

2 days after my operation is my grandads funeral and I'm not looking forward to looking absolutely horrendous in front of family I've not seen for years! It's 2 days after a lymph node clearance in my armpit, has anyone had that? Is it over ambitious to
Think I might be able to drive/ be fine after it?