Cancer Support Thread 93 - The Thread for the Dread and the Not Yet Dead? Everything you need to know about Cancer but didn’t want to know

[LemonDrizzle10]

Shiny new thread.

Hi all
Just catching up.

Back in hell again.
Got to have lung fluid drained tomorrow ( ouchy!!) So annoyed, as I will miss my complimentary therapy on Wednesday and coffee with nice colleague.

Had to ring Christie hotline yesterday.
Sweating profusely, palpitations.. felt grim. All obs fine and we have agreed surgical menopause is being brutal. This can't continue. Hoping sertraline kicks in soon!

@catmomof3 Sorry you find yourself here. That nurse doesn't sound very professional? Telling you that you might die? That's outrageous. Be guided and reassured by your gynaecologist and report said " nurse" to PALS! Did she say this directly in front of the gynaecologist?

Don't blame yourself. I took HRT before SBC diagnosis ( low dose). When diagnosed in November, how I cried and screamed with regret. Lovely gynae surgeon said " no regrets. It may have returned anyway" and this is true.

Fingers crossed for a firm treatment plan and ( maybe ) a nice holiday to look forward to soon 🌺🌼

Has it been confirmed that you definitely won't be having a hysterectomy?

@Tilllly how are you getting on?

@Shityshitybangbang I hate brown envelopes too. Hopefully it's just a catch up appointment to make sure you are okay, healing well etc xx

@Whatevershallidowithmylife Sounds as though you have a plan in place re: work. Maximising pension contributions is always a good thing.
That reminds me; I must dye my hair! Grey roots and sides annoy me hugely!

@Pacifybull Yes she is a macmillan nurse even introduced herself as that.

@Enigma52 She didn't say it in front of the gynaecologist, she said it when she took me in a different room to talk. She went from saying I still might be able to go on my holiday (I said the doctor said I won't) then to I have to warn you that you might die. I kept repeating the doctor said I won't and she just said but I need to prepare myself for the worst. I was dumbfounded.

Also I asked about a hysterectomy for treatment and the gynaecologist pretty much ruled it out and said once he gets all the results back they can decide how to treat it. But from his reaction I think the tumour is quite big and past any kind of surgery. I am just hoping it's contained to one area as like I said my internal pelvic scan in January scan showed nothing was wrong and even the urology ct scan and the colonoscopy I had last august came back clear. Plus my mammogram I also had last week only showed hormonal breast tissue and was told everything is fine.

Thanks for this xx

@catmomof3 I just think using those words to you, at that early initial meeting, was very unprofessional. The nurse is there to support you, not make you feel worse. I am not surprised you felt dumbfounded.

Hopefully the cancer is contained and once you know how they see going to treat it, you will should feel more in control.

I kept saying I'm autistic this is a lot for me but I don't think she cared much, the other nurses in the doctor's room were so lovely though I can't fault them, they jumped into action the second I'm said I'm autistic and took care of me. Kept reassuring me what the doctor said and that it can be treated. Doesn't fill me with much hope if this woman will be with me throughout my treatment.

@catmomof3 I understand why you wouldn't like the nurse after she said that to you. I didn't like my first MacMillan nurse much either, we didn't click. She wanted to chat about goodness knows what and made unfunny jokes while I wanted medical updates and just to know results of scans etc. I didn't find her way of saying things compatible with my thought processes or emotional state at all. The second nurse was so much better for me personally.

Neither knew anything about Her2+++ hormone negative breast cancer which is my type (around 4 or 5% of breast cancers are my subtype). The first MacMillan nurse in particular said a lot that I knew was completely wrong, but somehow I managed to keep my mouth shut.

So you are not alone in not finding your MacMillan nurse right for you xxx. I got the feeling MacMillan were desperate for people willing to be breast cancer nurses so literally gave the job to anyone or maybe they only train them for the majority cancer which in the breast means oestrogen positive.

I found a much more knowledgeable (research) nurse at Maggies. My physio and lymphoedema nurses are also really great and truly knowledgeable in their areas of expertise.

As for you trying to remain positive, I was told by a lovely psych at Maggies that they prefer to advise us to be kind to ourselves. All this "be positive" claptrap really annoys me when we are going through hell. Just maybe try to be kind to yourself? Do you like a nice warm bath? Have one. Do you like hot chocolate? Drink one. Or treat yourself to some reflexology, your favourite TV series, a walk, colouring in a mandala, basically some of the things that you personally enjoy xxx

Lovely to have your holiday next year to look forward to!!

@MothralovesGojira I have to go out now, but want to reply to your post soon x

@SummerCycling Thank you for your kind words, I'm hoping maybe I'll be given a different nurse when moved to the next town where my treatment will be but don't hold out much hope.

Also sending you much love, all of you here are amazing and I think it's so much easier to speak freely to those in the same situation, I can't be open with my mum even though she plans to come with me to everything because she doesn't understand. She is trying but I'd rather keep things to myself than tell her how I really feel, cba with everyone being upset around me in all honesty as harsh as that sounds because I have to comfort them and use energy on it.

Welcome to the nicest, most supportive thread on Mumsnet @catmomof3 . I can completely understand that your head must be spinning. I almost fell off my chair (literally!) when I had an abnormal scan last year, I felt so dizzy and weak - had to put my head between my knees and breathe slowly for a minute! The shock is real. I'm also very upset about the nurse - that's not okay. Perhaps your mum could write to PALS to call this out, if you will let her? I can imagine you don't have the energy to deal with this right now, but this really wasn't cool. Apart from that, my only advice is to fasten your seatbelt and try to get through this next phase, until you have a treatment plan. Everything becomes manageable with a plan.
With regards to your flights - BA will probably give you a voucher so you can travel at a later date, if you explain the situation. They might want to see some sort of letter that mentions the diagnosis, but I've found them to be nice in a similar situation in the past.

@TopOfTheCliff and @SummerCycling you've made me think about treatment speed a lot. When I had BC in 2020, I rushed as much as possible. Diagnosis was 7 August, surgery 17 August, chemo 21 September to 31 December, radiotherapy started 03 January. I just needed to get this done. And BC is obviously quite aggressive, so I needed to know we're not letting us carry on spreading for another minute.
With my bone cancer, it's been totally different. Abnormal scan in August, then more scans, differential diagnosis October, more scans, surgery December, now slowly waiting for a scan that's clear enough to read to decide on radiotherapy... And I think I'll be delaying radiotherapy until there's regrowth because the location is so tricky. Over 50% chance of going deaf in one ear, over 25% chance of temporal lobe damage etc etc. And the tumour is extremely slow growing, about 1-2mm/ year.

Anyway. I just had to type that out because it's weird to realise that not all cancers are the same. This one seems to be a "Hurry up and wait" type number.

@TopOfTheCliff Loved Pollença and had fantastic, very bitter coffee ice-cream in a little shop just off the main square. Wish I could have taken that home with me!

@catmomof3 We are all here for you.
This forum is such a safe space, to rant, share, scream, cry and swear.
Often it is easier to talk to " neutral "
bodies, who don't have an emotional/ family connection. When I told my mum about my SBC diagnosis, I totally underplayed it; I didn't want the family upset. Truth is, like for all
of us, it's mentally and physically draining.

You could perhaps request a different nurse? My " official " oncologist is patronising and negative. Thankfully I've seen and spoken to her only once! As @KentishMama said, perhaps a complaint to PALS is needed? Patients have choices and rights too.

Not to mention the breakfast in between @SummerCycling 🤭

Ooh @KentishMama that is the place! I remember the gelato. I could do with being transported out there now. Since the Zolendronic acid Infusion I have been achy and weedy. It just dawned on me I haven’t been taking my calcium and vit D tablets so that might explain the weakness. Off to find them.

DH and I have had a quiet Easter and had a chance to wander round taking stock of the mess our house and garden are in while I have been out of action. I am the organiser so without my input it’s chaos. Think of heaps of old wood, corrugated iron, pallets, and bits of old bicycles. I need a skip really, but DH would drag everything back out again. Perhaps he needs to go away for a few days… then there’s all the treasure from MILs house. I am trying to hold it back in her house and not allow any to come here. One old lady’s holiday souvenir is another one’s tat.

In other news I now have appointments for my deaf ear and my dry eyes. The fallout from chemotherapy goes on and on.

I'd send you some of that magic ice-cream if I could, @TopOfTheCliff! I somehow missed that you also have a dry eye. It's probably different from my dry eye (caused by a "sacrificed" vidian nerve), but I'm finding Thealoz Duo eye drops (preservative free!) and Hylo Night ointment useful. I'm seeing the opthalmologist again in two weeks to see if I need to step up my game.
Your DH's garden chaos makes me think of my FIL, who has a grand total of seven sheds full of rubbish in his garden. And several ride on mowers even though there's no lawn to mow thanks to all the sheds!

Seven sheds! Don’t frighten me. We have one shed and a wood store and a summer house but they are orderly. It’s the piles of stuff for projects I object to. It’s all such useful stuff apparently!

Thanks for the dry eye tip off. I’ll try the ointment. Since the Capecitabine my eyes have woken me up in the night with lids stuck to my eyeballs 😱

Woke up early this morning to feed the cats and came back to bed but started having a complete panic attack with thoughts of death. One minute I'm feeling positive that I can beat this, then I start to spiral thinking it's terminal.

You ladies are a lot stronger than me I don't know how you do it.

I still have slight bleeding after my biopsy's but yesterday when I went to the toilet I felt something fall out and make a splash. I couldn't see what it was but I don't think it was a blood clot. Anyone else with cervical cancer experienced this after a biopsy? I don't want to start googling.

@catmomof3 sorry your feeling really anxious this morning might be worth a call to the GP to see if they will give you anything for panic attacks, especially with all your scans coming up.

Try and focus on what you've been told which is that it's treatable.

Pretty sure I had various things fall out of me at different points (sorry grim) Did they put some silver stuff on to stop the bleeding after biopsy? Could be the residue from that. If you've got the number for the cancer nurses (not Macmillian) then give them a call, they should be able to put your mind at rest

@JlL2013 I actually have zero clue what they they used on the biopsy's, I think after he confirmed cancer while taking them I went into shock and can only remember him saying it's treatable everything after that was a blur.

Also I still can't wrap my head around the internal pelvic ultrasound missing the tumour? The reason I had one was to see what has caused my random bleed in December but the notes came back with everything clear including my cervix.

@catmomof3 it's probably worth calling the cancer nurses, they'll be able to talk you through what was done.

Not sure you'll ever find out how/why it was missed but that's rather alarming.

Got my ct scan booked for Friday morning, waiting for the mri appointment now.

@catmomof3 Glad you've got your scan booked, things will hopefully start moving quickly now.

@JlL2013 I hope so, be nice if I get a call to book my mri in the next day or two. I still don't know if I want to know what my staging is the thought of it fills me with dread.

Does anyone else find that their MRI appointments come last minute? I’ve had my PET appointment for ages.

@catmomof3 I understand about not telling your Mum much. I only told my Mum I had cancer (bit obvious when I was bald for about 10 months or however long that was) but nothing else. We have the right to choose who we tell and what we tell. Bad luck to any nosey-parkers.

We aren't necessarily stronger than you! We are just further along in the cancer diagnosis and treatment journey. Good luck with the CT and MRI. Keep us updated xxx

@KentishMama Your BC treatment was all very quick, that's so good and how it should be. Almost the speed of The Royal Cancer Treatment although not quite - your surgery would have been immediate, not 10 days later.

I really wanted treatment asap too, and was nearly at breakpoint having to wait so many weeks for all the scans, biopsies, results and finally chemo to start. I rang PALS to get my initial appointment because the breast clinic sent me a letter with the appointment way over a month later. The hospital website says patients get 2WW breast clinic appointments within 7 days -- what a lie 🙄My cancer progressed during the waiting time, the Maggies nurse told me it definitely will have done being Grade 3. I have to live with that knowledge. If it returns as stage IV (quite high risk of that having had a very large tumour, multiple lymph nodes and hormone negative) I might feel angry; as it was I felt utterly abandoned.

Waiting times matter so much. I think the King should speak out about that having had immediate treatment himself while so many of his subjects are waiting months.

Regarding your bone cancer, I hope it doesn't affect your ear as badly as making it deaf and that it doesn't affect your temporal lobe xxx

Seven sheds 😳😂

@TopOfTheCliff Eye lids stuck to eyeballs..that sounds horrendous!!! I agree with @KentishMama about the eye drops. I've had dry eye for years and find the preservative-free eye drops very helpful, such as the one @KentishMama recommended. But dry eye is nothing like eye lids actually sticking to eyeballs. Hope it improves soon!

@EachandEveryone Yes, I've often been phoned with an MRI appointment for the following day. Never had a PET scan so can't compare it with that. The CT scans were usually booked further in advance.

@Tilllly Yes, breakfast!! I could I have forgotten to mention that!! ☕🍽💕 xxx

@MothralovesGojira You have every right to know what the plans for chemo are and I hope they explain the various options. I wonder if some of it depends on the results from surgery? I know my post surgery choice (chosen by the MDT) of chemo + one targeted therapy versus two targeted therapies without chemo depended on the results from my surgery.

I don't know if I've been discharged from oncology or not because for 5 years after primary BC treatment ends we are in Open Access at our hospital, which is run by nurses. The only treatment I'm on now is Zolendronic Acid aka Zometa every 6 months. My primary BC treatment finished in the autumn of 2023. Is there anything like Open Access at your hospital? It's of no use several of us patients have discovered, but theoretically they respond if you have symptoms of cancer. So what I mean is, you're not missing out on anything useful if your hospital doesn't have it, but I was just wondering.

Can you at least maybe get surgery booked in? Will they allow that?

Great to hear you had a nice Easter.

@SummerCycling
They have not and will not run through chemo options while I'm in the primary care of BC clinic. It is a case of never the twain shall meet. All the BC doctors that I've seen have no knowledge of chemo types etc and they literally think that if they say 'trust me' then that is what you should do. I've have explained my reasons for wanting to know the various outcomes/likelihoods and likely time scales and I have said that I understand that it can not be set in stone but it's the absolute silence that is bizarre. And that makes me mistrustful and only serves to push me further away from doing what they want me to do. I've had some therapy to run it through and I know that I am not being unreasonable. My reasons are not doing things exactly as the hospitals require is not based on fear but logic based on what my home/personal needs are currently.

Today I did an E-consult online to my surgery requesting copies of everything that they received from both hospitals during 2022-2024 so I should hear by Friday when I can have those.
BC clinic finally phoned this afternoon and want to see me tomorrow morning so that's probably going to be unpleasant all round. I'll let you know how I get on.

I've never heard of Open Access although while in treatment last time I had a 24hr phone line to the oncology unit but access is only granted while you're in active treatment so it may be the same thing but a bit more crap? You are supposed to be able to call the breast clinic at anytime if you have problems. You phone, leave message and someone gets back to you. I called last summer because the duff breast was really painful and their previous suggestion of rubbing ibuprofen gel on it wasn't helping. I never got a return call and summer was busy so I sort of forgot about it until annual mammogram time in February.
I just checked the book they gave me when I started chemo and no, there's no such thing as open access mentioned so I presume that there isn't anything like it here....which doesn't surprise me in the least.

@catmomof3
I hardly told anyone when I got BC the first time. I didn't tell anyone that I did not see regularly within my family & friends such as my stepmonster (not seen for a year) and my cousin (not seen for 3 years). I couldn't face being the subject of family tittle tattle the same that I'd seen that the previous year when my cousin, Sil and Dil all died suddenly within a 10 day period - they were a bunch of utter grief vampires sucking up the misery and gossiping about it with friends. They were really put out when they finally found out that it was all done 'n' dusted and my cousin was furious wailing about how could I not tell him - jog on mate, my cancer is not your entertainment!
So don't feel bad for keeping your news to yourself - it's your tragedy not theirs.

Well the nurse never bothered to call me which I find very unprofessional. If this woman is meant to be my goto for information and support I think I'm doomed.