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.

Each I think its normal to have down and very anxious times with cancer. I was the opposite mine hit during treatment and breaks I was more relaxed (could feel like didn't have cancer) but it's quite common for your experience too and people seem to say busy in treatment and fighting the cancer and not in treatment more time mind wanders and feels like not fighting cancer. I found doing things in time off helped not the greatest time of year for that though went to Orchid Festival at Kew this weekend which was lovely, need to pre book it.

Glad your Mum had a nice birthday Top

I had mine done via NHS Pumpkin, at first I was given a long wait, I complained ccing in Chief Exec and got moved to that week. Only thing was no reconstruction and now that's really hard to get and c25k privately. Will get eventually on NHS. NHS also sent me private and paid for 2nd op. Private was nicer but only for own room, own bathroom, and nicer food, not thousands nicer.

@thereisonlyoneofme . I couldn’t cope without ddog. I can only imagine how your weekend has been. You have so much going on, I hope you let the amazing people here advocate for you.
💐💐💐

I hope the dog will be rehomed quickly and they will let you know. I wish we could all come around with a pot of tea. Has anyone been in touch?

That looks lovely!

Just checking in to send a hug to you @thereisonlyoneofme today. I hope you’ve made progress with that bloody awful GP practise. Darling dog will be settling in every day a little more ❤️

@thereisonlyoneofme hugs from me too. I can't imagine what you're going through right now and having to rehome your dog 💔
It's heartwarming to see such kind offers of help too.

Also thinking of you @thereisonlyoneofme, sending love and hoping your gp issues are sorted and your lovely dog is settling in x

@thereisonlyoneofme another hug from me, thinking of you and sending love. Hoping you've had some proper help from your GP and your precious dog is settling in well Xxx.

The time that you're waiting for a diagnosis and treatment path is the worst time ever. Hopefully you'll get your result fast @NicolaD76, and be able to move on to treatment soon.

@NicolaD76 welcome to the thread nobody wants to join. May your stay be short. First rule of the thread DON’T GOOGLE! Otherwise you will be assuming the worst and planning your funeral. Who was it told us not to borrow tomorrow’s sorrow? I have quoted that a lot. Try to stay with what you know and keep busy. While I was waiting for tests and results I weeded my whole allotment, picked all the fruit and made jam. I still feel a bit funny round gooseberries now! I found the Calm and Headspace Apps good at helping me sleep and staying sane. Come on here and rant as much as you like. We understand.

I can drive now two weeks on from surgery so I am celebrating by going to see my BCN team for a wound check. The ragged edges have got a bit red and sore and there is a bit of pus leaking. I’m due in clinic tomorrow for results but I thought I might as well get a swab done and see if they think I need antibiotics. Long term readers of these threads will understand that in my experience if it can go wrong it will! I have been good as gold this time and barely done anything energetic. It’s so hard to protect the axillary wound as it chafes when you walk and dressings won’t stay put due to the skin stretching. It all takes time and is boring and painful but no big deal in the scheme of things.

Sending strength to those that need it
Top x

@NicolaD76 I second what others have said. Don't assume the worst, just focus on today. My diagnosis turned out to be challenging, but nowhere near as challenging as my worst fears while I was waiting.

Top mentioned the Headspace app. I've been using some online resources on the Penny Brohn website lately (nice exercise videos), and I see that anyone with cancer can access it for free through them.

Sorry about your wound @TopOfTheCliff - that's so annoying when you've been so careful.

@NicolaD76 I second what others have said. Don't assume the worst, just focus on today. My diagnosis turned out to be challenging, but nowhere near as challenging as my worst fears while I was waiting.

Thanks all, health anxiety Is crippling anyway without all this.

Thanks @dotty2 I am home now with a fat packet of Co-Amoxiclav antibiotics and a plan for a blood test tomorrow to check my white cells and CRP. It makes me laugh when the experienced nurse says to the wide eyed new recruit “We will play it safe with Top. She is very unlucky”.
I hope my new policy of expecting the worst every time is going to mean I get some nice surprises when things go well. I do sound a bit of an Eeyore though. It’s not health anxiety, it’s just bitter realism fuelled by nearly three years of this dreary process.

The sun is shining in my new conservatory and I have a Good Housekeeping magazine and coffee. Relatively pleasant!

Thinking of health anxiety how are you getting on @Anxiouslikenoneother ? Have you got your scan results yet? Any closer to a diagnosis? And how is your little one doing? Sending best wishes

I hope everyone is doing well whether waiting or under going treatment.

Any tips or advice for selecting a wig ladies? I’ve my appointment tomorrow - my hair is so thin that it’s time.
I just wondered if there was anything you’d wished for with the benefit of experience/hindsight.

@Whattodotomorrow A second opinion! The place I had to use my voucher didn't allow you to take a friend etc. I found the whole experience a bit depressing, and it was a bit of a schlep away from home. So while they offered to order in some more for me to try another day, or for me to go away and think about it, I just wanted the experience to be over and bought one then and there. I never really liked it and haven't worn it for ages now, so it was a bit of a waste. I think what made it particularly hard for me is that I have naturally very dark hair, which I've never dyed, and I had salt and pepper streaks of grey. I quite liked how my own hair looked before I lost it, but obviously no wig manufacturers make anything that colour, and plain dark looked too harsh. Most wigs seem to look like you've had highlights put in, which is fine if that's your normal look, but just felt wrong to me. Good luck!

Thanks @dotty2 a friend is coming with me but I didn’t think to ask if that was ok. I’m viewing it as just another thing to tick off…and hope to be in and out without being overwhelmed with wig jargon. I just don’t want it to look too groomed as that’s so not me!

I'm going to start slowly exercising today. I don't care what my mental health is doing to my sleep, I'm going to clean the house, put the laundry away, walk the legs of the dog, watch some shitty tv and get an early night. I'm off work for the foreseeable, I've had a chat with the surgeon at the Christie and although he can't get me a date right now he's working on it and i shouldn't go private. He's had another look at the tumour they removed from my arm and he's reclassified the aggression of it. I'm now top priority. And that's why I'm sat awake at 3am,

I have to say this forum is far nicer to spend time than the melanoma forums I found on Facebook. They're so depressing. I get it because people who haven't had any recurrence don't post but it honestly feels like a death sentence when you look online.

My surgeon when I spoke to him today was fairly realistic about the possibility of recurrence and described it as picking up a dandelion clock, you think you've got the whole thing but it just takes one seed to break off and you've got a garden of dandelions. They will check and remove my nodes and I will have 6 weekly checks for 5 years. However unless it shows up somewhere obvious I won't know until it's stage 4 as there are skin cells all over the body.

I feel so sad but also hopeful because immunotherapy has made massive strides in recent years but I'm not sure I can have kids now? Would I want to do that to them?

Also I'm high risk for my operation because Covid gave me Graves' disease last year and my thyroid is still high so I'm at risk of having a thyroid storm after surgery so despite it being a fairly minor run of the mill operation on papers, I'll need to stay in for a while to make sure I don't try and die after surgery. When I was diagnosed with Graves' disease I was In a thyroid storm and my hr was 170 resting for weeks, I lost so much weight.

Wow that was a big fat rant! Still haven't heard from my boss. Not a sausage. I got an email saying that they couldn't sack me because it's now cancer but he's like to do a capability meeting, and then hr emailed back and said that wasn't possible because cancer is covered by the equality act.

I think im struggling the most because I literally had a mole. It looks a bit odd, i went to the dr 3 x and he agreed to refer me on my 3rd time because I was 'anxious', the appointment got lost in the postal strike so that was 6 weeks and it continued to grow, the lovely nurse took one look and said it needed to come off because it was growing blood vessels, but by that time it was Christmas and the staff got Covid, so I had an appointment for middle of jan and in that time it just took off. It became so big and itchy and sore, and then the consultant told me she thought it was a wart so I relaxed and it was fine in my head!

Then I got the call to come in and I just new. However you tell people you've got skin cancer or aggressive melanoma and people say 'oh I had s mole off it'll be fine. You'll be grand' however this isn't a mole. This is my life is forever changed.

Sorry not even making sense now. Thanks for the support xxx

Oh and I started having a look at my body and noticing moles that look a bit different and I found one where the sun don't shine and now I'm pissed off that my gp is going to have to see my arse!

Morning @PumpkinPastiez yep, agree this forum is much better - there's some wonderfully positive and helpful people on here who are a massive help. It's good to have a rant.
Where are you going to walk your dog? What's it's name?

Doctor won't mind about looking at your bum, they've seen all sorts 🌻

Morning everyone.
Just taken my very first Tamoxifen tablet. I’m keeping my fingers crossed for no side-effects.
Have an echocardiogram later today and a ‘welfare / return to work’ meeting tomorrow. I didn’t win £35 million last night so I suppose the work thing has to happen soon.
It’s another beautifully cold, crisp and sunny day here. Perfect for a stroll later. Hope everyone has a good day today.

@PumpkinPastiez thanks for telling us your story. How frustrating to feel that your survival may have been compromised by faffing. It happened to a very good real life friend of mine before all the new wonder treatments came along. She nearly made it as she got onto an early trial of ipillimumab (sp) and defied the odds for five years. I miss her. That is the downside of any cancer forum, you lose more friends than you would on a thread on house cleaning or dating! But perhaps it is a gentle introduction to our future living with the fear of recurrence. We would much rather turn our backs on it and pretend it isn’t true. And for most of us that will work fine.

I am struck by the courage of the posters here. I hate being called brave for getting through treatment when I don’t have a choice, but being able to face up to the diagnosis of cancer without falling apart and with a few jokes along the way is genuinely brave. We see the posters who come here for a while during tests and go away so relieved when they are reassured by a normal result. They are genuinely terrified and rightly so. We have lived alongside that fear for so long we have acclimatised and started to treat it as normal. It is only when the risk level threatens to ratchet up that we remember the fear.

I’ve got a day like that today. It is Results day and I’m bricking it. Fortunately the antibiotics are working and the wound infection is receding. I’ll post later but keep your fingers crossed for me.
Top x

Fingers all crossed @TopOfTheCliff

Everything crossed @TopOfTheCliff thank you for your v thoughtful comments.