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 so sorry. You must want to scream and cry.

How frustrating @thereisonlyoneofme . Dealing with all the admin shit related to cancer sometimes feels a bit like the sadmin after a bereavement - loads of petty hassle at the time you are least able to cope with it. All you want to be doing is howling into the abyss while someone brings you tea and biscuits, and instead you're endlessly on hold failing to get a straight answer to a simple question.

Very well described @dotty2 and it is so frustrating @thereisonlyoneofme I would be tempted to send them an invoice for your travel costs. My DH did that recently after he had driven a 70 mile round trip to donate platelets and was given a parking ticket for using a Donor space “ because your car had a parking permit for another hospital” (ie my Chemo permit) He appealed the fine and billed them for his admin time and inconvenience and suggested they donate it to Macmillan. No reply so far!
We are now Covid free and trying to resume what passes for normal life here. I’ve booked up a few exercise classes but I really just want to magically grow hair, get thinner and fitter immediately. I’m bored of Cancerville.
Sending positive thoughts to all
Top x

@thereisonlyoneofme I would be raging too, have you been given an alternative ENT appointment? Could you ring your CNS to see why your CT has been pushed forward a month and to ask her to chase your CT? It's all too much to deal with being your own cancer secretary on top of everything else. What frustrates me intensely about all this chasing up is just how unbothered everyone is, I know it's just a job for them but I'm made to feel as though I'm making a huge fuss over nothing when I'm really not.

FantaseaExactly ! Ive had to chase up a CT scan, consultants secretary not answering phone. I feel like Ill be doing my own scans and deciding on what pills I take without any input from medical bods !

I spoke to ENTs secretary finally and she said he;'s on annual leave! String of people ringing her today that have turned up for an appointment and no clinic! Really confidence giving. Ive managed to secure another appointment with someone else at the end of the week. I always feel as if Im waiting, waiting. The ear thing all Google tells you if its going on you should get quick treatment or else it could be permanent.
I must stop using Google !

@thereisonlyoneofme surely they would have known he was on annual leave and not booked the clinic or thought to notify those who had been erroneously booked in? Good news you've got an appointment at the end of the week with someone else. I totally get the waiting and how much it gets you down, I'm the same and also I'm rather too keen on Google, I should know better after three years but I still do it. I've found out today that my usual onc has been called to cover at another big hospital so his patients at mine have a new one. According to my CNS, she is 'lovely' but I can't help but be unsettled and worried that she will change my drugs or insist on a test I haven't thought of. As soon as I heard the news, I thought of you and your 7(?) different oncs so I don't feel I have the right to moan but now have a tiny bit of insight to the struggles you have been facing.

My GP just rang me to ask how Im coping. Of course I burst into tears. Its the not knowing where the primary is. I think I will drive myself mad. I started to panic about money today as well. As a nurse I rely so much on my overtime and unsocial hours. I’ll be down by at least £400 a month. At least I wont be going out gallivanting for awhile. I have an appointment on Weds with clinical oncology and on Thursday with medical oncology. In two different hospitals. Does anyone know what the difference is? I take it the first appointment is with my own doctor.

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A small update. I finally sent photos etc off and my GP was on the phone within the hour. He agrees that it looks like the skin cancer has reappeared and is getting me urgent assessment. Since I last posted I found a second lesion so if I need surgery I think I'll need quite a bit of rebuilding of my face. The first invasive tumour made a mess of my face, but two more could be seriously disfiguring. Meanwhile today I got four appointments through from heart problems over a month ago. It seems the NHS has woken up from its Christmas and New Year lethargy.

@Novemberhater well done for taking that step! I’m glad they’re going to make things happen for you sooner rather than later. How are you feeling now? I’m sorry to hear that you’ll need some extensive surgery to repair the areas but I really hope it gives a fantastic result for you.

@EachandEveryone Ah man, it sucks when that happens. I always find I’m okay unless someone asks me kindly and then I just crumble sometimes. I highly recommend calling the financial team at Macmillan, they can offer grants and also really have a look at what you could be entitled to, they also offer help filling in any benefit forms I think. Financial worry is the last thing we need but seems to go hand in hand with cancer!

I'm so glad that I posted and got the push to get on with it. Obviously I'm nervous, but better than leaving it.

Cancer admin is a pain. I could have done with a PA at times as it took up so much mental capacity. I remember losing it with DP if he asked what we need at the shops, I couldn't deal with any more mental load.
@EachandEveryone I agree with speaking to Macmillan for financial guidance. My hospital has the most wonderful Macmillan Information and Support Manager. If there's a Macmillan info place do pop in. Maggies either.
Medical Oncologists are the systemic side of things so chemo, hormone therapy, probably immunotherapy type things too. Clinical Oncologists are radiotherapy, possibly other stuff.

Cancer admin is a pain. I could have done with a PA at times as it took up so much mental capacity. I remember losing it with DP if he asked what we need at the shops, I couldn't deal with any more mental load.
@EachandEveryone I agree with speaking to Macmillan for financial guidance. My hospital has the most wonderful Macmillan Information and Support Manager. If there's a Macmillan info place do pop in. Maggies either.
Medical Oncologists are the systemic side of things so chemo, hormone therapy, probably immunotherapy type things too. Clinical Oncologists are radiotherapy, possibly other stuff.

Scans came back good, almost everything is healed/treated with the exception of a patch on my hip that is active but stable. And this was the first time in almost 3.5 years of this malarky that I got some imaging of my brain (not a concern, all clear, more a baseline) but that was pretty cool to see what it looks like.

@Novemberhater well done for making the calls and getting things moving!

Sorry to bother fill. I got sent home from my last radiotherapy session (SABR)with a letter stating possible side effects. I am shattered, which is one, I’m also suffering from nausea but oddly only on alternate days. More worryingly for me is that I have little interest in food. I am huge at the moment as unable to move a great deal and steroids, so in some ways not a bad thing until you take into consideration my history of anorexia. Anyone have any experience/suggestions please? Thank you.

Gilread I was told by radio would not get nausea but did and had been pre warned by a lady who suggested using leftover anti sickness tablets from chemo. That worked for me and didn't last long. Tiredness also wasn't bad for me but did have a stage where chemo effects peaked, hormone tablets starting and radio but then improved and back swimming a mile twice a week now. Exercise is good once you have energy back. No experience of anorexia so maybe best to get professional advice on that or advice from someone with experience. I did calorie count and try to do 1600 a day but that may not work for you with your history.

@HerbalRefreshment excellent news that your scans were okay! I’d love to see my brain!

@Silkierabbit , thank you! I have got antiemetics now. Calorie counting is not for me, I’ve gone from 12 to 22 being on steroids and panic if I go over 600 calories. But yes, I will talk to someone.

Hi

@Gilead I completely lost my appetite with radio, even with anti sickness tablets. Ended up eating lots of sweet things, Haribo was my friend, not touched it since though. I didn't have an eating disorder to contend with though.

I did have a radiotherapy therapist though who I just had a quick chat with every week, she was bloody brilliant about all the weird side effects etc, might be worth seeing if there is one available where you are.

Hooray @HerbalRefreshment that is a bit of good news!

@Gilead you sound very self-aware re your eating habits. I am trying to swap in some healthy habits now I'm through chemotherapy so I can shed the extra 8kg I am still lugging round. I was listening to Michael Mosely Just One Thing today and he suggested swapping fruit for sweet things. I am going to give that a try as I love fruit (and almost all the Christmas chocolates have been scoffed now!) I am still surprisingly tired but I think it is the dose dense chemo followed by Covid taking it out of me. I need to be a bit more patient!

Regards to all
Top x

Crikey @TopOfTheCliff , that sounds rough going. May I make a suggestion (and yes I’ve done this today) knock up a quick bowl of fruit salad, bung in a container in the fridge, this way it’s instant. I find I let fruit go off if I don’t do this!

Ive got an appointment for a CT scan next week theyve brought it
forward because of my balance problems, but Im worried I wont be able to
get there as balance is getting worse, and Im finding typing on the pc hard now so thats freaking me out that my co ordination generally is off.
Well Ive hopefully got an ENT private consult today if I can get there so might get some answers

Theresonlyoneofme, it’s not nice to hear that your balance is getting worse and I hope you can get to your appointment today, and that you’ll have some peace of mind soon.