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.

I’m finding this thread immensely helpful. Whoever gave Me the Vaseline tip for nose issues, that has helped enormously.
everyone should feel free to ask for advice about everything, this is such unknown territory and you never know what might help

www.amazon.co.uk/Seamless-Multifunctional-Headwear-Resistance-Headwrap/dp/B092CM4495/ref=sr_1_195_sspa?crid=18Q4PN046XSGL&keywords=buff+neckwear&qid=1676153152&refinements=p_76%3A419158031&rnid=419157031&rps=1&sprefix=buff+neckware%2Caps%2C82&sr=8-195-spons&sp_csd=d2lkZ2V0TmFtZT1zcF9hdGZfbmV4dA&psc=1

I got a couple of packets of plain and patterned buffs like this, and wear them like the picture called SAHARAINE in the 6th thumbnail picture down. I have no idea what saharaine means, but these are just tubes, you just pull them on like a cap and then flatten the back down

I’ve just ordered one of these and in the photos there is a video of the lady demonstrating how to wear it. She makes it look easy and rather stylish. I have a feeling I might experience a tad of frustration and zero style when I come to try it!
www.etsy.com/uk/listing/1056058331/uk-lovely-pearly-pink-cover-all-head?ref=yr_purchases

Those links are incredibly helpful thanks - I'll be ordering some of those!

Can I ask if you wear them at home as well or do they get uncomfortable? I'm worried about shocking my kids but I guess they just get used to it in time ...

My kids are teenagers and have been fine with me being bald at home. I feel better without the hats unless I’m out. They love my wig but have also said they’re not bothered if I go out without it.

Thank you for the links, Etsy lady really does make it look quite easy and stylish!

I ordered a couple of ‘hats with scarves’ from this website. I think it is run by someone whose mother suffered chemo hair loss. I can’t see them there now apart from a couple of similar ones in the ‘special offers’ section.
If going for a beanie if some sort, I’d go for something with a bit of bulk. A simple beanie made me look like I had a proper pin head. Not good. They are pretty cheap, too.

I have had the conversation with my early 20s sons, and said I really want to go bald at home, but they need to say if they are uncomfortable - in fairness, it is them that have to see it, not me. They got used to it very fast, as have my much younger godchildren and nieces/nephews ( same conversation with them)

In practice I often feel cold at home and put a tube buff on, but am bald quite a lot of the time too

@TopOfTheCliff it must have been really hard to hear all the “buts” when anyone is ever hoping for a simple “all clear”. I am so glad though that it sounds like there is a plan going forward and overall it sounds like you are still on a good trajectory.

i am afraid I still haven’t got my answers but my anxiety has slightly eased after finding out a bit more information. It still haunts me like a cold sweat every day I see my lump in the mirror but I am trying to stay strong for my baby.

so the mri was not conclusive either but they think it could be an intramuscular myxoma (which would be amazing as it is benign, but I am scared as it is more rare than a malignant sarcoma). My case went to Sarcoma MDT meeting last Monday but I haven’t heard about any further steps yet. I will try and give them a call tomorrow to find something out. I also know that the lump measures at the moment at 3,5 c 3,5 x 4cm which is smaller than it feels. However, what worries me most is that it almost doubled in size since I found it end of November and I worry that it might still be malignant. I feel like I am sleeping on a tennis ball when lying on that side. I am hoping that I won’t have to wait too long for the next steps, I am guessing biopsy.

on top of that I am also waiting for a brain mri as my dizziness hasn’t improved but hopefully this will be just to rule things out.

Ah good to hear from you @Anxiouslikenoneother You are on my mind thinking of the torment you have been through waiting for a diagnosis and a plan. Hopefully they will resect your lump soon! It would be wonderful if it was benign. It’s hard being a rare case when you just want to be a normal member of the public! Love to you and your little one.
At Tops Towers I have been good, sitting quietly letting my wounds heal and my hair grow. The highlight of my day was pushing broad beans into compost and finishing off some knitting. After the excitement of Saturday’s outing it has been calm. This week is quiet too, just nurse appointments for dressings. I might try a gentle yoga class to stop me getting too bored. I am finding it hard not knowing whether I will be fit and able to volunteer for my sports clubs or languishing on chemo again this spring. I think my friends think I must be terminally ill as the treatment just goes on and on. I’ll probably still be on this thread next Christmas. I’ve cheered up now though. Not so ragey.
Have a good week folks.

@TopOfTheCliff your earlier post about anxiety resonated so much with me, and I just wanted to echo everyone on this thread as it is such supportive place. I admire everyone who finds strength not to fall apart and keep a positive mindset. I am certainly cannot be called brave as just went to pieces but slowly picking those up.

It’s been 2,5 months now since I went to gp with the lump and the kindness of friends, this thread and sarcoma uk support line was the only thing that stopped me from going completely insane.

@WorryMcGee How are you now? How terrifying! I heard about febrile convulsions but i don’t think I would have been prepared in any way if it happened to my baby. My 4-month old has got to have a routine surgery soon (which I am sure will be fine) but a thought of witnessing a convulsion scares me even more! How is your little one and your partner now? i like the previous advice on shutting the door in the troubles face- sounds like you have had your share for a few decades now!

@Anxiouslikenoneother I’ve been thinking about you and hoping you had got some answers. I really hope it is benign. DH had a huge benign meningioma (it really was huge - on an MRI of his brain it took up basically a quarter of it, it was baffling how it had gotten to that size without anyone knowing. It took the neurosurgeon 10 hours to remove it!) removed in 2020 and he made a full recovery. We discovered it when he collapsed and had a seizure at home, I still have flashbacks to how terrified I was that day which made watching my DD have a seizure as well 100 times worse. I’m still struggling to process it tbh, it was just awful and I burst into tears at random times thinking about how scary it was. Also now I’m petrified she’s going to have another one! She’s absolutely fine now, she stood up on her own this morning 🤯 I put her on her mat, turned to open the curtains, turned back and she’s stood there next to the dog looking very proud of herself 😂 I’m not ready! She’s 10 months on Sunday.

DH is waiting for speech and language therapy and is on blood thinners to help blood get past the tear while it heals. The consultant says that as DH is in otherwise good health he expects the artery to heal on its own eventually, but he needs SLT to help him swallow in the meantime. Apparently only 1 in 50 000 people have this injury every year so of course it has to happen to our family. We have no idea how he did it. We’re relieved the brain tumour isn’t back of course but it’s just another kick when we’re down. You actually couldn’t make it up!!!! DH says people are going to start thinking we live on a nuclear waste site or something…

That was a long post! Can you tell I’m fed up 😩 I hope all goes well for you and your little one’s surgery. Everything is so much scarier when they’re tiny ❤️

@EachandEveryone and others, sorry to hear about your hair. I must say I shaved mine within 3 days of it starting to come out in handfuls. It distressed me SO much but was better once if it was off. I used some £20 amazon Haircube Wigs when needed which were amazing for the money, I trimmed the fringes and straightened on low heat where needed and no one knew they were wigs. My eyebrows and eyelashes lasted until the last session then dropped out. So annoying!

Have heart though, this was my hair 2 weeks ago, 10 weeks after finishing chemo.

Name change, but it's me again. Skin cancer on face. Thinking of all you lovely people who have far more going on than me. Update: I had magnified photos taken and sent off to a dermatologist. A few days later I was sent a face to face appointment with the GP. Meanwhile I had a letter from the dermatologist saying that my lesions were fine. I then went to the GP and she had a good look and said definitely abnormal and a blood supply to the bigger one. She realised that the girl who had taken the magnified photos didn't actually photograph the right bit! So glad I had a GP that was on the ball. I've now got an appointment in May to be properly assessed. Long wait as one is growing fast, but better than nothing.

Thanks @TopOfTheCliff , that’s right, I just want to be very unremarkable now! One of my gps even asked to look at my lump out of professional interest when I visited for unrelated matter. I guess it’s so unusual but probably good for them to see. Have you come across any soft tissue sarcomas in your career?

I hope your wound keeps on healing well, take it easy on yourself - good tea, book or a series mixed with some fresh and food is always very restorative.

I meanwhile getting a bit frustrated as my referral seem to go awry - was told it was done last Tuesday but central booking team still could not locate it today. hopefully this would not matter in the grand scheme of things but I just feel like everything is taking so long.

Forgot to add - if anybody has any tips on how to chase appointments / results appropriately I would be very grateful. I don’t want to be a nuisance by calling but just getting gradually uneasy and worried that there are delays that could have been avoided.

@WorryMcGee oh my goodness so many doctor appointments and what a huge tumour he had, I am so glad that it was benign and that he is expected to make a recovery from the artery damage too. Must be so hard to go through all of this when you have to look after a 9 month old (please tell me they sleep better when they get to that age?) I hope you both recover quickly and completely ❤️ I also wanted to say thanks for the first ever message you posted here in reply to me, I kept re-reading it when was feeling really low.

and congrats on standing up - it’s so precious when they learn a new skill isn’t it? Xx

Sending hugs for getting through the waiting @Anxiouslikenoneother and @Winterisalmostover . I can't offer much wisdom except solidarity I'm afraid as in the same position myself - it's really hard isn't it?

Tomorrow some more of the cards are turned over for me, as @TopOfTheCliff refers to them. I find out results of node biopsy (ultrasound found nothing), whether HER + or not, and results of CT scan. Dr said he was doing the CT just because I was anxious, but of course my brain leaps to the conclusion that he is expecting to see something.

Preparing for all 3 to be bad news, given nothing to date has been better than expected!

@EdwardTheBlueEngine yes the waiting and agonising about what ifs is excruciating. I still haven’t learned how to cope with the wait. I have trouble staying optimistic but equally going to the darkest places doesn’t do your mental health any good. I hope you have good support around you. I would be exactly like you worrying about the ct scan but it’s good that they are doing it. I am sure that they have ordered it to be safe rather than suspecting something. So most likely it will be clear.

@Anxiouslikenoneother I would ring the person who did the referral, then after that, ring the person who told you the referral had gone through. If you don't have these numbers, ring the main switchboard and ask to be put through by the name of the consultant you saw. This should connect you to their secretary. It may be something as simple as the button not being pressed to make it 'send' even though they think it has been ordered if that makes sense. Have you been given a Clinical Nurse Specialist to ring? Perhaps your GP could chase the referral on for you, I think Top said this is part of their normal duties. When you ring for a GP appointment, do it as soon as they open and start with 'I'm a cancer patient and...' as that seems to do the trick at my surgery. I'm really hoping that one of these contacts will be able to throw some light on what has happened.

Another thing, any letter that arrives, have a careful look for any phone numbers and record them all in one central list, I got the direct line to the CT unit with the available appointments this way! Oh and if anyone who is booking appointments asks you if it is urgent, then the answer is always yes. My CNS said to me that everything in Oncology is urgent.

Please don't worry about being a nuisance though. You're as deserving as the next person and I have found out through bitter experience that polite persistence is the only way to get what I need. You may have to be a bit of a nuisance but you will be pleased you did. My troubles started just before the first lockdown 2020 and throughout the protracted run-up to my eventual diagnosis in December 2020 and treatment starting in January 2021, I was made to feel like I should be 'grateful' and many medics would remind me 'there is a pandemic don't you know'. Yes, and I have stage 3c cancer. I'm someone who avoids confrontation at all times but somehow I found my voice over the Christmas of 2020 as that meant a further fortnight of delay and I was just so tired of being fobbed off. Some admin staff will try and make you feel like you're being a pain. I had one tell me I 'needed to be more patient' (for chemotherapy) and another telling me (for a venesection (pint of blood removed)) that it 'wasn't nearly as simple as I thought and there were 73 patients ahead of me for the same procedure'! On this latter occasion, speaking to someone else the following day got me an appointment in just a couple of days time so they must have dashed through those 73 patients in record time! Throughout this time, I felt so utterly defeated and helpless with no-one to turn to, it's a horrible time and I do feel for you.

@Anxiouslikenoneother I can’t recall ever seeing a sarcoma of any sort in 37 years of doctoring. But I was a GP with a special interest in mental health issues so they didn’t come my way and as you have discovered they are uncommon. The knack with appointments is to befriend the secretary or appointments team with a mixture of charm and pestering, so they want to help/ get rid of you.
@EdwardTheBlueEngine I try so hard to expect the worst so I am pleased when it is less than the worst. I was caught out last week because the radiologist and oncologist had both said they were expecting me to get a complete pathological response but I should have known better. I am by nature a sunny optimist so have to deliberately lower my expectations.
My wound is festering away and gaping so I won’t be able to start exercising for a bit longer. I can’t have a shower this week either. I am grumpy and fed up but worse things happen at sea.
wo

Haven’t been on the thread for a while as sometimes I need to check out of Cancerland … but I will go back and read … love & strength to all of you whatever you’re going through & whatever stage you’re at on this crazy cancer rollercoaster.

In the meantime I wanted to say, especially to my fellow stage IV sisters, that life is good right now. I’m living in the moment. Day to day. Most of the last 12 months has been hell on wheels for me, but tonight I had a glass a champagne in a lovely hotel room 11 floors up in the sky overlooking Westminster whilst watching The BFG with my precious, adorable, wild 4-year-old. Right now - life is good. These everyday moments … sometimes they shine like jewels.

Glad you and your daughter are having a nice hotel stay Mowly

I have an appointment with Macmilliam financial advice this morning. I am normally perfectly capable of working this sort of thing out for myself, but its totally beyond me these days. I love this thread, and send you all lots of love in my head, but again, it seems as if I am not reacting to any of you, as I just dont seem to be able to follow a long conversation

I will one day soon

That’s lovely @mowly77 ❤️