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Cancer Support Thread 85 - Hoping for a positive 2023

1000 replies

AGreatUsername · 24/12/2022 19:10

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.

OP posts:
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17
Anxiouslikenoneother · 17/02/2023 10:47

I hope its okay if I post on the fear too and thank you for sharing this as this has been on my mind a LOT lately and I felt strangely relieved just reading your post, knowing I
not alone. Whilst I am still waiting for the diagnosis (being seen urgently next week for a mass that has not been clearly identified by mri and that is growing quickly, my odds are a very rare sarcoma or an even rarer benign tumour) but I am totally gripped with the fear of what ifs and the disease and dying. I am 36 and just gave birth to a long awaited (6 years) ivf baby, and this huge lump appears. And I can’t still believe it’s happening to me. I would be a hypocrite if I said that I am scared of potential diagnosis or dying just because I want my baby to have a mum. No, I am scared of my life ceasing. I want to experience more things and to live longer to see my baby grow up. But it is definitely heightened by the fact that I want my little baby to feel me and feel secure with me. I do not want to die at least until he is in his teenage years as I just can’t imagine the heartache a little one can have otherwise.

I am being told that I have to wait till diagnosis ( I have already been waiting for three months and I guess it will be more weeks till biopsy is done and analysed and I am completely spent!) but I feel the need to plan and work through what ifs. And how I would cope. I think counselling could be immensely helpful if you find a right person. I would try a free service first but I find that you need to really click with your counsellor for it to work. I tried various counselling routes for other reasons before and had a mixture of great and no so great ones. If you don’t get on with a therapist it might be that you need to ask to change them or look at private talking therapy (the latter was the only thing that helped me overcome bereavement when I unexpectedly lost my dad at age of 58). If you look for a private psychologist make sure they are HCPC registered and have expertise in this area.
I think this would be so beneficial in helping to find coping techniques right for you but also tapping into collective wisdom here is so invaluable.

I also remember my dear granma telling me she was scared and did not want to die when she was 80 despite living a long and fulfilled life. So we will all feel the fear no matter the age, but I get the extra cruelty of going through this young. My farther in law just had a near death experience where he collapsed and was dead for 4 minutes before being resuscitated , in his words “it wasn’t that bad”.

I think it is so important to learn to focus on the NOW (like Mowly says (and what a great mantra, thank you!) But I haven’t mastered it!). I will also try finding and cramping as much joy as you can in every day. Who knows, maybe a new pandemic will be here or an alien invasion? :) so this probably should be the main focus of the efforts. Meditation (paid headspace version is amazing), or local cancer charities that offer complementary services/ treatment might also help.

However, i wonder if it might also be helpful to face the fears sometimes (and only sometimes so they don’t take away from the living). I was recommended a book by a colleague who is a palliative research scientist - I think it was by Peter Fenwick, a neuropsychiatrist from Cambridge, and is called The truth in the light. It explores hundreds of near death experiences and from the words of my colleague (I haven’t had balls to read it!) gives glimpse into something science can’t quantify yet. I hope it will be decades before I will need to face dying but it’s good to know that book is there as I think it will be a great source of finding strength and scientific spirituality. Another book that I am contemplating about is staring at the sun by Irvin Yalom, it explores the fear of death and aimed at helping people to live more fulfilled lives. He is a brilliant physiologist and if you don’t want to go to this book yet, I would highly recommend Love’s Executioner by him - a collection of stories from real life patients (two of those stories touch on the fear of death, one being about cancer patient) . It’s a brilliant and compelling read.

I am sending huge hugs and wholeheartedly hope that we don’t have to face any of these for many many many many years ❤️

EachandEveryone · 17/02/2023 12:56

WorryMcGee · 17/02/2023 09:28

@EachandEveryone I’m so sorry. If you have the energy call and keep calling until they fit you in somewhere. Two nurses stayed until 8pm for me yesterday as the paclitaxel didn’t arrive until gone 1pm because of the late ordering yesterday (and I cold cap so takes a lot longer), hopefully you will find similar kindness at your hospital. If you can get someone to speak to you this morning maybe they can fit you in somehow tomorrow, especially if yours is one they have in stock anyway?

Imagine not even leaving a return number? Luckily my consultant was in today and i asked the nurse to get him to call me. There was no point in moaning to him and hes got me a slot on Monday 0915😮 Im not at my best in the morning especially school traffic. So this means all my treatment will be on a Monday now. As long as I get it.

WorryMcGee · 17/02/2023 13:11

@EachandEveryone if the consultant has spoken to you and booked you a slot he will have authorised the chemo, so I’m sure it will go ahead on Monday ❤️ just NOT what you need at all, I burst into tears when they told me they would have to move it to Friday instead of my normal Thursday because it hadn’t been ordered on time (which is why they took pity on me and stayed late yesterday for me, bless them) you get it in your head that things will be a certain way and that’s hard enough so when anything deviates from the original plan it throws you back into worry town - with an extra dose of anger and frustration thrown in.

TopOfTheCliff · 17/02/2023 13:47

Thank goodness they’ve got it sorted @EachandEveryone and you can crack on. I imagine your consultant is irritated on your behalf.

I went for the big reveal and both wounds had sutures sticking out so the BCN removed them. I seem to react to everything they put in me! Still a few more days of sitting still. We had a chat over progress and I suggested instead of the dreary Room of Doom they set up a Rage Room with plates to smash and a punchbag. She thought I was joking but I wasn’t!

Thanks for your contribution @Anxiouslikenoneother I am sorry you are having to wait so long for a diagnosis. You are spot on about getting the right counsellor. Some years ago I needed help and found one who did something odd called Experiential Focussing which was amazing. She helped me hugely but I never liked her and I don’t think she liked me either 😂 It was the process that helped. Nowadays I just like to get outside and keep busy. That does me as much good as talking about myself which is why it is so frustrating to have to sit still.

Sending strength to everybody
Top

AGreatUsername · 17/02/2023 17:48

@Anxiouslikenoneother thank you so much for your long post. I am going to check some of those books out actually, they sound really interesting! Sorry that you’re going through this awful time.

OP posts:
Whattodotomorrow · 18/02/2023 08:29

@TopOfTheCliff reading your post makes the rage real. How doubly unfair for you. I don’t know how you don’t have an un-smashed plate left in your house!

@Anxiouslikenoneother thank you for your post. I will look up those book recommendations and I’ve just signed up for the free course with macmillan to talk to someone. If it’s not working for me I’ll look for someone locally and private. As well as anger I’m carrying a lot of guilt…all I ever wanted to be was a mum and when it didn’t happen, I had a lot of fertility treatment. Despite what the oncologists say I can’t get over that I spent 5 years pumping myself full of hormones and now this cancer is hormone driven.
I hope you get your diagnosis soon, the unknown is definitely the greatest fear.

I still haven’t worn my stupid wig!

WorryMcGee · 18/02/2023 13:00

@Whattodotomorrow my mum had years of fertility treatment to have me and was also convinced her breast cancer was linked, despite what her doctors said at the time. I’ve had no fertility treatment, never even taken the pill because my mum scared me off anything hormonal - same lymph node positive, very hormone receptive cancer as my mum, at the same age (37) and on the same side. It’s not genetic, we’ve checked. So I think it’s just one of those things. I have wondered if pregnancy gave it a helping hand though.

FutureUncertain · 18/02/2023 14:22

Hi all. I’m so sorry there are so many of you dealing with all this. It’s good that you are all here to share information, advice and kind words.

I hope you don’t mind me barging in, I just wanted to ask a question because I’m really concerned about the speed of care DH is getting.

Diagnosed stage 4 metastatic cancer end of October. Surgery end of December, they weren’t able to remove all cancer as it had spread (he is immune suppressed so his body can’t fight things) by the time of the operation.
He is still waiting for ‘urgent’ (that’s what the surgeon put on the referral) radiotherapy and isn’t due to even see the consultant until the middle of the 2nd week into March so we still have no idea when he will actually get radiotherapy. Is this normal?? It just seems so, so long and as if it will be all too late by the time he gets it. I’m a worrier at the best of times so I’m just hoping if you all say this is normal I can wind the worry back a bit.
thank you.

Lisdeflores · 18/02/2023 15:30

Inspired by @Nimbostratus100 on another thread I'm going to start a new fitness regime and will do Park Run next Saturday.
I'm an old timer who took a break from this thread, losing someone w/o had been so had been so kind to me on this thread knocked the stuffing out of me.
I was diagnosed with stage 4 ovarian cancer in 2020 - paclitaxel /carboplatin then surgery and then Avastin for 18 cycles.
My 2nd reoccurance (peritoneal) November this year and now 3 cycles through calex\carboplatin.
I stated running after my first lot of treatment finished and I know how much it helped my mental health and I've let it go this time so I have to get it back.
I have been lurking on the site and I see that some people have been struggling with the recovery period. I found it helped me to think of myself as someone who was going through post traumatic stress syndrome and to allow myself time to recover. I think that helped to stop me being so hard on myself and stop me driving to get back to normal. Cancer took normal from me but there was still a good life to be had and hopefully I will get back there

Nimbostratus100 · 18/02/2023 15:50

hi @Lisdeflores

I hope you manage to get back into running and get lots of pleasure from it xx

LemonDrizzle10 · 18/02/2023 16:20

Hello everyone, hope that today is a good day for all.

I'm seeing the oncologist next Wednesday. Does anyone have any advice about what to ask at the appointment please? Consultant at post op check said I'd need 6 months of chemo and then radiotherapy.
I've read that you can get chilly while having the chemo treatment, are there any other useful things to know or be prepared for?

Anxiouslikenoneother · 18/02/2023 18:53

@Whattodotomorrow I am so sorry to hear that you had a long infertility journey. Just wanted to say that I am not a stranger to that myself, it took us three ivf cycles to get pregnant and during my last successful cycle I was on a triple dose of of progesterone until 12 weeks in pregnancy. I do not think the treatment itself has contributed to the lump growing though, maybe pregnancy accelerated it... but I am not unfamiliar with guilt. I keep thinking what I have done wrong and - I had a lot of stress in my life, ate lots and lots of sugar but also due to suffering from contamination OCD I used enourmous amount of handwash on very raw chapped hands. And I can’t help but blaming myself
for that.
i am seeing a plastic surgeon next week who will take me through the results of the MDT but likely biopsy so bracing myself for more wait.

EachandEveryone · 18/02/2023 18:53

I dont get chilly during treatment but I do feel the cold after. It has been very cold here though so Im not sure. I do love my electric blanket in bed. I lost 3/4 of my hair after my first cycle and I think that was quite late. Im now very short not shaved yet. I ordered a couple of these which l love www.etsy.com/uk/listing/883751434/chemo-beanie-hat-headwear-stripe-cap?ga_order=most_relevant&ga_search_type=all&ga_view_type=gallery&ga_search_query=chemo+beanies&ref=sr_gallery-1-2&frs=1&bes=1&col=1&organic_search_click=1 and a couple from the annabandana site.

Take loads of snacks and your own water. Hopefully you will also get tea there. It makes me starving. Dont wear a jumpsuit! You will wee loads. Wear something with loose sleeves. I take books and an ipad but have never looked at them. I do get talking to people. Ive found it to be a very uplifting positive place so the time passes for me. I have a whole beauty routine I do the day before paint my nails black, do a face mask, oil myself. God anyone would think I was going on holiday. You do what you have to. Good Luck xxx

LemonDrizzle10 · 18/02/2023 21:58

Thanks @EachandEveryone
I went wig shopping the other day - lady in the shop was amazing. I'll get a bag of snacks and books ready.

KefaloniaKid · 19/02/2023 09:37

Hope everyone has the lovely sunshine I’ve woken up to today. The daffodils are edging their way up in my garden and it finally feels like spring is coming.

Its post-surgery results day for me tomorrow. The Fear is creeping in and I’m trying to just focus on today.

TopOfTheCliff · 19/02/2023 11:29

Hi @FutureUncertain sorry to see you here. Does your husband have a specialist cancer nurse? They would usually be his advocate and the person to turn to to speed things up and answer questions.
You will find a support thread for the family of cancer patients on the Life Limiting Illness forum. Hopefully they can help you adjust to the frightening situation you have found yourself in.
Best Wishes
Top

dotty2 · 19/02/2023 14:39

Thank you for your post @Anxiouslikenoneother . I've been thinking a lot about death and how I feel about the future. My DM died of cancer 4 years ago and was definitely not reconciled or at peace with her diagnosis. Even though she was in her 80s she felt a strong sense of unfairness and wanted to live longer - and who am I to argue with that. But I find it hard to think about.

On a more mundane note, I am fed up about my teeth. When I was diagnosed, I was half way through problematic root canal treatment for a tooth with an abscess. So as not to delay surgery, I just had it extracted, thinking 'will deal with that when it's all over'. But now my teeth have shifted slightly because of the gap and I keep getting food trapped. And I have sore numb fingers following chemo and am finding it hard to floss so it feels really irritating. And it turns out I need bisphosphonates, and so I am worried about my bad teeth and the possibility of osteonecrosis, and won't be able to deal with it by having an implant as I'd thought I might. So on the one hand, that's all really trivial and just an annoyance. But on the other hand, every time I eat or clean my teeth I'm reminded of what a many faceted shit show cancer is. Feeling a bit low and ragey today in spite of the sun and spring flowers.

TopOfTheCliff · 19/02/2023 18:56

Thinking of you @KefaloniaKid and will be giving you a virtual hand hold tomorrow. It will be easier once you know the facts.

I’ve got a weird sore throat suddenly right down by my larynx. I’m feeling a bit peculiar so am sucking strepsils and taking it even easier than before. We had a 90th birthday tea for FIL today, poor chap doesn’t really understand what is going on but it pleased MIL. I hid by the door to avoid sharing whatever is wrong with me. @dotty2 rage away. Don’t forget the virtual Rage Room with plate smashing and punchbag. If my wounds haven’t healed up tomorrow I am going to have a tantrum!

dotty2 · 20/02/2023 09:23

Thank you @TopOfTheCliff for reminding me about the virtual rage room. I smashed a few virtual plates (including a particularly hideous one with a lady in a pink crinoline) and feel a bit better now. Just have to hope my crappy fingers don't lead to me smashing any real ones.

@KefaloniaKid - thinking of you today. Thinking back to when I got my post-surgery results, I think I was too quick to try to put them under the 'good news' or 'bad news' heading. I hope for you it's simply 'good news' but for a lot of us it's probably a bit of both. On reflection, I wish I'd just sat with the facts for a bit longer before trying to work out what I should think about it all.

KefaloniaKid · 20/02/2023 17:04

@TopOfTheCliff and @dotty2 thanks for your kind messages.
I feel like I’m in daze right now. The results are all good. I just can’t believe it really.
I was so prepared and resigned to bad news but I’ve been so fortunate, as there was a negative margin round the tumour and clear lymph nodes.
Onto radiotherapy tomorrow but for today thoughts of that can wait.

KefaloniaKid · 20/02/2023 17:05

I meant onto planning radiotherapy!

dotty2 · 20/02/2023 17:28

Well that is good news - I'm so pleased for you. That must be a huge relief. And I agree - worrying about RT can wait. Just focus on the good news for now.

TopOfTheCliff · 20/02/2023 18:20

Hooray @KefaloniaKid we celebrate all gains on this thread! I know exactly what you mean about being in a daze. It takes time for your brain to process what you have been told and relief to start to percolate through.

I have had a truly shit 24 hours. I think it’s probably just a virus DH has given me but there is an outside chance it’s a reaction to exemestane so my BCN has let me stop it. My wound putters on and the BCN tried to tell me I am doing too much. Seriously I have only got off my sofa twice in the last ten days to ride my bike five miles and visit DD. But I am back in bed now whining and complaining. I had a total meltdown last night as I couldn’t sleep and felt awful and just cried. Part of being strong is knowing when to let it all out. The only way is up from here.

thesandwich · 20/02/2023 19:32

@KefaloniaKid so glad you’ve had good news- sometimes it’s really hard to believe it’s true. It will sink in.
@TopOfTheCliff so sorry you are having such a shitty time. You are absolutely right- sometimes part of being strong is taking time howl at the moon.
I read a great business book many years back called SUMO- shut up and move on. It used a great metaphor of “hippo time” - time to wallow in misery, giving ourselves permission, before moving beyond. I’ve found the idea v helpful.

HauntedDishcloth · 20/02/2023 20:58

What symptoms are you having @TopOfTheCliff ? When I tried Exemestane it messed up my liver levels and as such, I felt quite sicky at times. Are you trying anything to help your wound heal up, other than time & rest? It was frustrating when my reconstruction wound wasn't healing as it felt like it was delaying everything.

It's good you had that great result @KefaloniaKid !

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