Cancer support thread #76 - newbies welcome!

[Bloodybridget]

Here's the next thread for anyone at any stage of cancer, from noticing a possibly warning sign, through tests and scans, diagnosis, treatment and beyond. Come on in for advice, sympathy and support.
The last thread is here.

If you've been on a previous thread, please come and say hello and introduce yourself!

If you are a relative or friend of someone with cancer and looking for support, please look for other threads; there is one in Life-limiting illness for partners - link to latest. This one is for cancer patients ourselves.

I've never seen this thread before but been having a read through this evening, you all sound so strong and brave.

I've got an appt with the GP tomorrow morning, she asked me to come in after talking on the phone Friday. I noticed a pain in my upper arm around 6 months ago or so, and it's been getting worse. Throbbing at night. I'm not usually anxious about health or anything, but this feels like something to get checked out.

When I was at secondary school a friend had similar symptoms. Within a couple years she'd had her arm removed, another couple of years and she'd passed away. I still think of her sometimes, and her poor family.

I don't want to tell my partner in case it's nothing but it means I can't talk about it so it's all going round in my head! Grateful to have found this tonight, hope it's ok to post x

@JudyGemstone

Oh I hope that your Gp appointment goes ok tomorrow i hope you get some sleep tonight. I'd definitely tell your husband he would want to know. Understand you not wanting to worry him if it's nothing though.

Good luck 💚

@Shrillharridan definitely give Macmillan a call. You need to be as proactive in getting support for your mental health as you in getting your physical health sorted.

@JudyGemstone welcome and may your time on this thread be brief.

In other news - I ordered a wig. I let dd have the casting vote so it is fairly sensible. My hair is very 'in between' at the moment.

I'm a little sad about the mass of chillis I have grown all summer -and now have frozen as well as pots of chillis sauce - that I cannot eat due to chemo-related mucositis (I really am working my way through the list...). It's not too bad at all - peaked in week 2 - but definitely can't do pickles or chillis, sadly. Craving dark chocolate, ice cream and coffee though. Definitely not losing weight.

I've quite a cancer library developing. Just treated myself to this
www.amazon.co.uk/Cancer-Made-Me-Shallower-Person/dp/0060789735?tag=mumsnetforu03-21

Hi @JudyGemstone and sorry to see you on this thread although it’s lovely here. Don’t forget the golden rule NO GOOGLING! Nothing good comes of it. Keep busy and try not to drive yourself mad before you know what’s at the bottom of your symptoms.

I decided to be proactive too. After nearly falling over trying to do one legged yoga I have found a personal trainer who is going to ring me about a sensible programme to get me fit again now I’ve finished chemotherapy. She has the impossible task of helping me lose weight and exercise while I can’t walk and am shielding. Her best bet would be to kidnap DH to stop him feeding me cake.
The broken ankle is improving but the festering wound still has a staphylococcal infection which I hope won’t delay my breast surgery.
My hair is now grey stubble and my niece wants to paint my portrait which has amused me. One for posterity perhaps! She is a talented artist.
Best wishes to all and hope your week is starting on a positive note.

@Shrillharridan sending gentle reassurance your way. It will all be okay eventually.

Hi can I join?
Was called in today after ultrasound and full gyanacaelogical exam last week. After at the time not thinking things looked too bad, the biopsy revealed pre-cancerous and some cancerous cells. I'm now waiting for aMRI appointment, and then they want to do a robotic hysterectomy.

And: I'm moving in less than 2 weeks, I'm in the middle of a divorce, had to tell my DC tonight (24, 22 and 17), the youngest has ASD so I was concerned about her reaction.
But work is fantastic - so that is one good thing. And my 22 year old will take time off college and drive me about and to and from my hospital appointments.

Welcome @MollyButton to the group none of us wanted to join.
I hope the appointment for your MRI comes quickly.

Hi @MollyButton and @JudyGemstone, I'm newish too and loving the support here. Hope appts were/are ok.

@Shrillharridan hope you're doing ok?

@TopOfTheCliff you're more committed than me to exercise. Wow. I'm going 30 min walks and I think I'm Joe Wicks!

@Acinonyx2 I sense chilli jam in your future. Hope you enjoy them when you can.

Hugs to everyone that needs it. T-2days to consultants appt and results. This biopsy was successful and has been to the MDT so I am expecting it to be something and trying not to be a wreck about it. Good news is that I changed the time I take my anti anxiety stuff and I fell asleep no problem. 2 year old had other ideas and was up most of the night.

Good luck today @seizethecuttlefish

I remember reading other people saying that approaching the end of chemo was a weird feeling and wondering what they meant, I know now
I have been so focussed on my body healing I forgot my mind .So many questions , do I pay my professional fees ? Who's even going to employ me? is there life after cancer. A very tearful day for me today luckily for me I'm seeing a friend I think she may need broad shoulders.
My mum just cheered me up with a advent calendar

Morning all

It's one step forward, two steps back for me at the moment. Despite thinking I'm taking it easy by only doing 2 mile (ish) walks I completely lost yesterday to fatigue. My legs felt like they did when I came out of hospital and the neuropathy in my feet was so bad I struggled to get out of the bath (I had to let all the water
out first). So today I'm back to square one.

@TopOfTheCliff I'm also considering joining gym/having a PT to manage my efforts. But money is an issue at the moment not having worked since March. There must be some kind of discount for cancer patients.

Not square one @InOtterNews because you made all that progress before . You had a set back yesterday and that feels devastating but all the work you have done will put you back in track when your ready x

My auto correct hates me! I I mean on track[hmm

Just popping in to say I am so sorry to read about the many ways in which so many of us are struggling at the moment. Sending lots of love and strength to everyone who needs it. xx

@Lizdeflores I can see being emotionally challenging and it's one reason of several reasons I try not to wish away this difficult phase. Al the time I'm in treatment I feel there is something actively combatting the cancer - but once I stop - a lot of people will think it's behind me and over - but of course it isn't. I'll be constantly waiting for the other shoe to drop.

@InOtterNews You sound frustrated but it seems you've been doing a great job trying to keep fit. It's bound to be rather up and down. Now I've signed off sick - I hear you on the money issues.

Port went in today - and it has all gone very smoothly. They've left the needle in to use at chemo tomorrow - an idea which horrified me yesterday but it's actually very doable and will save them stabbing the new port tomorrow. I really needed something to go smoothly and rebuild my confidence in going into hospital - since the last two procedures went so off piste. Hoping tomorrow will also go smoothly.

I had a condemned woman's pre-chem request dinner. Curry - no chilli in it but a spoon of hot lime pickle on the side which was challenging but doable. I've got to stop with the online Xmas shopping though...

@Acinonyx2 very frustrated. The neuropathy in my feet feels like it's worse now than before - the numbness is now over my whole foot rather than just in my toes. Trying to build stamina and manage fatigue is extremely frustrating.

I did some stretching today but that was about it. I've booked a massage on Friday to try and loosen everything that has seized up when I was bed bound. I've also signed up for free yoga session online tomorrow for cancer patients. I doubt I'll be able to complete the hour but will give it a go (I've never been bendy!)

P.S. I've really missed chillis this year @Acinonyx2 - I haven't been able to go as spicy as I would like yet. Even though I still can't taste it properly, I can feel it in my gullet

I’m most concerned with how Christmas is going to go, we would usually have our close friends over for dinner as well as family. Family won’t be here this year.
I’d love to plan for them to come (they live at the end of our lane) but I just don’t know how I’ll feel.
Hopefully after tomorrow’s appointment I will have a chemo plan so can think about it.

@InOtterNews I've been put off yoga in the past as I can't do it very well at all - the trick is to accept your own limits and I keep meaning to give it another go. If you find you are up to up to it - I should send you some of my homemade chili sauce. Mucositis and reflux has interrupted my chilli-addiction. Roof of my mouth still stings from the lime pickle - but you have to walk on the wild side occasionally [winkl]

@MrsPnut I'm also a bit concerned about Xmas as I have 3rd chemo 21st so if I am poorly it will be bang over Xmas - but I can't know for sure how I'll be - could be worse could be better. No family, but one other family I want to invite over - I've broached it with them but not set a date and leaving it a bit loose for now but will very probably try and organise something. So perhaps just explain your dilemma - I'm thinking could be cold buffet and sit in the comfy chairs for example rather than dinner at the table.

I'll probably feel fine by NY

No news yet.
I'm going to phone tomorrow afternoon if I haven't heard anything by then.
Dr has scheduled a follow up phone call for Friday afternoon so I'll ask for more diazepam then.
I'm trying to be calm. Still not googled!
Sorry to see so many of us are awaiting appts/results.
Its awful.

Sorry to see so many newcomers since I last posted, but welcome

Also aghast you’re see how many of us are facing admin battles and delays

But I have good news. I had a registrar not a consultant for outpatients (always a good sign) and I’m fine (and the key measure of how I’m doing is ever lower, which is a good sign)

Also she said that the haem community do not see a reason why those with CML should not have a Covid jab, nor is there any reason to think we would not form the intended immune response. Fingers crossed that is indeed the final position

Also, DD is out of SI without having become symptomatic and is back in school today. But has just texted me to say that the whole of the year group one below her has been sent home!

@MrsPnut I sympathise about Christmas. I have my first chemo on Friday, which means second round falls on Christmas Eve. We have arranged to go to my sister's house on Christmas Day and they will cook dinner etc - so if I am too ill I can just stay at home in bed and at least I don't ruin Christmas for everyone. It totally sucks but hopefully it is just this year.

Does anyone know if they add bloods to your record when they need to speak to you? All my blood results except CA125 have been added to my records online yesterday early morning and are ‘no action needed’ I am freaking out that the one I am most worried about isn’t on my records and am thinking that’s because they don’t want you to find out bad news online, they want doctor to tell you and explain next step. Or ami overthinking?? I have a phone call withGP booked for tommorrow before work I really wanted a heads up if results were bad.

I think some bloods take longer to test/get results?
Some can be done within hours like fbc.
A friend has got some spare diazepam so I'll have some for tonight and tomorrow. (I know its naughty but needs must...)
Everyone is out of the house tomorrow so might try and do some jobs.

It’ll be because the test takes longer to run

My most important monitoring test takes 3+ weeks for a result

OTOH one of the fastest is a regular FBC only takes 30 mins of so to do the actual test, but it’ll be a couple of days to get it checked and reported

And others fall in between

I have oodles of blood tests (haem cancer) and I really wouldn’t read anything into the time it is taking for results to reach GP. If anything, the opposite - results badly out of range set off a (metaphorical - or perhaps literal?) klaxon in the and they come back very, very quickly

TL:DR - don’t read anything in to timings the results arrive with GP

Thank you