Cancer Support Thread #81 Newbies welcome

[TopOfTheCliff]

This is a kind and friendly place for those with cancer or those worried they have cancer (or who used to have cancer) to hang out.
Please introduce yourselves and chat away. No issues are too big or small here.
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Ok, merry-go-round starts again today, off to get my bloods checked this afternoon…
Have had a rubbish couple of days, sickish, tired and hair coming out.
Actually woke up this morning and thought, maybe it’s my mood, not the treatment. I’m actually showing classic signs of depression, which given everything that’s happened recently, is not too surprising. As I will have to be in Drs today, I might mention it to nurse for advice.
Good luck to everyone starting another week of this, and I must say, those of you who give hope for what happens next , thank you.
BTW @balkanscot, am being treated at WG too. Cannot fault the care they are giving.

Hope you don't mind me joining. Diagnosed stage 2 melanoma Nov 21. I have a pre op today in preparation for a wide local excision and sentinel lymph node biopsy in the next two weeks.

I had pushed it to the bank of my mind over Xmas, but now it's feeling very real and scary. I worry about every ache and pain. Don't really know why I'm writing, just want this to be over.

@Podgedodge I’ve had exactly the same thoughts over the weekend. I’m planning to call my GP today to discuss the possibility of trying some ADs to see if they help. I’m doing as much as I can lifestyle-wise to mitigate depression, but can feel myself sliding. As you say, not really surprising considering everything we’re going through.

Welcome @Citygirl2019 It is a scary prospect when you are facing surgery.
I was petrified before my first surgery last year and wrote to my HR director to make sure he knew what to do with my death in service benefit etc. He replied that he was planning to dance the funky chicken at my 90th birthday so I'd better get through the operation.

I feel down too despite a reasonably enjoyable weekend and I woke up at 5am with anxiety. Antidepressants might help. I am using Kalms tablets over the counter at the moment but I am not on any medication. They may not be compatible with some medication. They say light helps. If you can go out a bit for a walk or in the garden etc. Talking to friends is good but I don't want to talk about my concerns to them over and over again. Feeling very emotional and every little thing makes me tearful. I tried to some yoga yesterday and ended up injuring my back as well. However let's try to enjoy the little pleasures of life. I will pray for everybodys speedy recovery (i am not religious at all)

@Cratos we sound so similar, I’m sorry you’re struggling too I really hope you feel better soon. I’m very tearful almost all the time, and my anxiety levels are sky high. I’m getting out in the fresh air, trying (gentle) exercise like yoga, I practice mindfulness…but I can feel the anxiety mounting, I have terrible trouble sleeping and I have a permanent lump in my throat due to it (had scans to check for spread, none thank goodness, so know this particular symptom is anxiety). I feel like I’m ‘giving in’ by considering ADs (absolutely ridiculous, I know, and doesn’t fall within my ‘normal’ beliefs at all 🤷🏼‍♀️) but the prospect of months and months of feeling like this is awful. Haven’t phoned the GP yet, though…

@TwoBigNoisyBoys I think it is a good idea to talk to a doctor and get some help. Perhaps we are stronger and wiser for acknowledging that we need some help. You seem to be doing all the right things.

@TwoBigNoisyBoys I had a lump in my throat and a kind of hoarse voice for ages and had it checked out, turns out it was caused by silent reflux, I take omeprozole now and the lump feeling has gone.

I completely get the feeling low, lack of sleep makes me feel dreadful and desperate, a few good nights and I can cope with anything.

@Citygirl2019 welcome, I'm waiting for surgery on the 14th, I've also been very adept at putting things to the back of my mind, but it all feels quite real now. What will your recovery be like? Do you mind me asking where on your body your op will be?

I've given up vaping! I'm ridiculously addicted to nictotine, I'm hanging in there but it's so hard 13 hours and counting.
Waiting to hear from hospital if I have to come off HRT before op, fuck me nicotine withdrawal and menopause symptoms, probably not a great combination

@MissSmiley it is on my right shoulder, so due to the lack of skin will also have a skin graft. They seemed reluctant to give a recovery time, when I had the mole removed I was told not to lift for four weeks.

I work from home, but also get full sick pay for six months so I am going to ensure I allow myself time to heal.

Thank you @MissSmiley, that’s really interesting, my oncologist said she thought it was anxiety-linked so I’ll ask the GP about that, as I’m not due to see the oncologist until early March.

@Cratos hope you’re doing ok today. I still haven’t contacted the GP re ADs, still mulling it all over.

@MissSmiley definitely try and get off the nicotine as it will hinder wound healing. I had an abdominal incision as part of my reconstruction and the nurse mentioned they can always tell when someone is either a smoker or said they dont smoke but snuck a few here and there. She said that along the incision line there are little holes that open up and if there is a problem it can be difficult to resolve quickly. So perhaps keep that in mind while you fight through the withdrawl - its a tough enough surgery without potentially risking some wound complications!

Well, my lovely, lovely GP gave me a phone appointment today and made me feel much better. The NHS sHould bottle her.
She basically said, of course you feel crap, who wouldn’t in your situation, surprised you haven’t been in before. Take as much pressure off as you can, shelve anything that can be shelved, be kind to yourself and celebrate successes, like getting dressed every day, because they are important. She said it was probably too soon for grief counselling for my DH because though he died six months ago my grieving effectively stalled with my cancer diagnosis and subsequent treatment, which makes sense, and is something which does cause me anger.
I will speak to the nurses at the chemo clinic on Wed as well, but feel a bit relieved I’m not losing it yet. Plenty of time for that later.
I did have a really good cry today, which worried DD, but I think I needed it as I spend a lot of time scared to start crying in case I can’t stop. But I could, and apart from a headache now from crying, I feel a bit better, like I’ve been given permission to be sad.
Not exactly a good news post, but nothings straightforward in this cancerland, is it.

@HerbalRefreshment thanks, I'll have been off it for two weeks by my surgery date. They told me to take my HRT off, my hormones have dropped and I can’t stop crying, just waiting for the palpitations and insomnia to come back and the night sweats, I’m so fed up

Welcome @feettothestars and @Citygirl2019 you are most welcome although we would all rather not be here. Waiting is the worst thing!

Sorry to hear so many are struggling with low mood and anxiety. I am totally avoidant so I keep busy and jolly and don’t dwell on anything unpleasant unless I have to. My Specialist nurse is my lifeline. When I was in the midst of chemotherapy and feeling like I was going to die I rang her and she was wonderful. She persuaded me that the more I expressed my misery during treatment the quicker I would bounce back afterwards. Now I am emerging slowly from the horror I think she was right. Be kind to yourselves this treatment is truly going through hell!

Have I told you about my bonkers yoga class? Everybody there has had breast cancer and it’s free. The teacher is wonderful and very spiritual and has an elderly farting blind dog that sits on her mat with her and covers for the rest of us. We breath out the badness and realign our chakras while she plays us chanting music and rings her bells. I always fall asleep during the meditating bit and it’s so uplifting! The rest of the ladies are very taken aback by my energetic cycling and gym classes and it gives me permission to ease up and do a bit less. I think I am benefiting hugely from the aligned chakras and it’s saved me a fortune on the counselling I was going to have instead.

Love to all. Live from moment to moment and try to look after yourselves. We will get through this!

@MissSmiley

You're having the Whipple? Heard today that a distant relative in the USA with pancreatic cancer had his 2 weeks ago. Home after 7 days. Developed an infection but not bad enough to be readmitted. He's late 50's. His partner has gone back to work today part-time. She's been looking after him.

They gave him chemo and radio first and surgery was conditional on how he coped with them. All good. He's recovering well, but doesn't feel like eating yet. Still, early days and it's a relief that the tumour is finally out and in the bin.

Hope this helps in the run-up to your op.

Best wishes to everyone else. No shame in taking anti-depressants. Think of them as replacing the seratonin you've used up coping with the shock of diagnosis. It's a cure for a chemical deficiency not a one-way ticket to Reeee-hab.

@Thymeout yes, that's my op but I don't have pancreatic cancer. I hope your relative continues to do well. I have a duodenal GIST called Gerry! My surgery is in 13 days. Just have to not catch Covid beforehand.

How are you doing Thymeout?

It's 2.40am and I'm awake, I'm missing my HRT patch already, one of my main reasons for taking it was insomnia. Night sweats haven't returned yet, I'll keep you all posted :-)

Hope everyone is safe in these high winds? I keep expecting to see a woman on a bicycle fly past our window.

I saw the nurse practitioner at my surgery yesterday and the hole in my chest is infected (pseudomonas suspected). She swabbed it and irrigated it before using flaminal forte and a dressing. She made me an appointment on Friday and was going to get the tissue viability nurse to come along too.
I got home to a message to call the medical dosimetrist who has arranged to the tissue viability team to see me on Thursday when I go in to see radiotherapy again.

I was talking to my friend earlier and pointed out that if they hadn’t all known me for years then they’d think I was a troll. It’s almost unbelievable all of the things that have happened to me over the last 15 months.

I’m also having a root remnant removing on Monday so I can start zolendronic acid infusions.

@MrsPnut I totally relate to your troll concept. When I tell people about the events of 2020 and 2021 I can see them backing off in case I am a deranged fantasist making it up. I wish I was!
We will go on to have dull but long and happy lives where absolutely nothing happens I am sure

Yes! @TopOfTheCliff and @MrsPnut.
Roll on the boring days of just living our lives with no drama.

@Silkierabbit I see! I got it mixed up - not that I am biased or anything but Edinburgh is bloody lovely. 🏴󠁧󠁢󠁳󠁣󠁴󠁿💪❤️

Waves at @Podgedodge - indeed, WGH Cancer Centre & Breast Clinic (& Ward 1 nurses - even though just the smell of Ward 1 makes me go 🤮) staff have are brilliant.

Re: boring life - bring it on, indeed!

6 days until CT scan. I go through so many conversations with my brain during the day. I just need to dodge Covid (before the scan) which is running rampant at DS’s school. And he is attending a birthday party on Sunday at Ninja Warriors. I am doomed…

Edinburgh is lovely Balkan though a little nervous what weather we will get. I asked about swimming to the BCN and to my surprise as normally they only seem to recommend things which cause pain and suffering oka cancer treatment they said it should be ok 3.5 weeks after 2nd operation I had in Edinburgh, well Scottish borders hotel is in I have booked so far with pool, as long as no open wound which there is not and not red. Red is a bit of a grey area would say there are areas of pink but have 2 weeks to go and red and pink are very different colours They recommended a waterproof bandage. Need new very attractive mastectomy swimsuit not buying the crazily priced ones. Asdas finest will do me.

Results on 8th when will get a very hard bump back to reality, in pain atm but relatively happy as just waiting so drug free this week. I dislike life being boring but dream of a treatment free life not sure will ever have that as hormone positive. I really miss travel and would love to get back to that though no idea what will be viable afterwards. For now will just take breaks as and when can otherwise get so depressed at times, its the treatment that depresses me, hate feeling ill and inactive, feels like being tortured slowly sometimes.

Good luck avoiding covid Balkan, absolutely rampant here, just in permanent hiding, would not be at all surprised if we get it from our short break but staying in permanently does my head in. Having to try and redo DS ehcp which is a nightmare and DD is gcse year and very anxious, she is doing much better and just has an offer to Kings Maths School for A levels though maybe too far from us to be viable but cheered me up.

Sending love to everyone else.

Thanks for asking, MissSmiley. 2 years post op and no appointments now till October. Then bloods, CT and colonoscopy - deep joy - but putting cancer back in its box till then and hoping it stays there.

Fingers crossed for you to stay covid-free before your op. I currently have a son and 2 grandchildren from different households laid low. Numbers v high here in London. Wish they'd kept masks for public transport. Not much to ask.

Best wishes to everyone else, as always.

Just some advice please.
Newly diagnosed with cancer.
Had CT scan on Sunday and was told MDT meeting would take place the following Thursday (today) and I would be called that day with the results.
As yet, no-one has called and I'm losing my mind.
I've texted/left a message with the nursing team but currently no response.
Have they forgot about me or is this normal?

Sorry to hear you have a cancer diagnosis. At my hospital you are not told day of mdt you are given appointment to go in after mdt within the next few days and told them in person. With results I have always been given an appointment so definitely would chase as you have done. Not sure what your cancer is but mine is breast which is most common one and there you go in get results, 10,000 leaflets, they give you basic details of type, worth taking pen and paper in and noting that, and then they organise more tests usually, generally mri of breast at least do if surgery first, I had ct too as bone pain but if no extra symptoms and no sign in lymph nodes they dont do that at this stage. Then another wait for those results. I was also told surgery first as her2 negative, they said if her2 positive would have been chemo first.

Its terrifying waiting for results but you have done the right thing and best thing to do is try and distract yourself but much easier said than done. I do music, tv, etc and pretend not happening.

Ah @MrsPnut it's as though someone looked around and said - oh she's a tough old nut - dump it on her. How did it go today?

We've been in covid positive prison over here but today I tested negative so tomorrow I get to leave! Yay! Dh and dd still positive though.

I had a priority PCR but didn't get it done within the 5 day window needed to get the antiviral treatment - just a heads up to do it asap if you have one. I haven't been worryingly sick though so that's OK - I'm not coughing as much as I was a month ago, surprisingly.

When I first felt ill though - I wondered if it was cancer-related I can see this is going to be a running theme.

@EffortsToBuild I never knew when the meetings were but I'd expect to get my scan result when I'm told it will come. It's not the kind of thing you want to be waiting around anxiously for. Do you know specifically what the scan was for - just thinking that might influence the sense of urgency they have (I've had some back quicker than others depending on what they were for in that sense).