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.

@lucysmam That's sad to hear. Makes it hit home, more than we would like.

@Tilllly how are you doing?

Another day of feeling physically and mentally " meh" Upset stomach/ nausea/ coughing. Please when will it end? 😥

I hope you have a bed and are more comfortable now @Tilllly

Currently pretending the next two days aren't happening by hiding in my bed. I should really be packing my bag for tomorrow. Instead I'm wallowing which is ridiculous really. Ddog has just brought me a tennis ball.

Sorry to hear that @lucysmam

@Tilllly I've been thinking of you today and really hoping you're in less pain and more comfortable now. 🌹🌺💐xxx

@lucysmam So sorry to hear your sad news.

@lucysmam sorry to hear your news.

@SummerCycling we were talking about phesgo previously, I realised the other day after rereading some hospital letters that I am actually stage 2, not stage 1 as I had thought. I'm not sure how I had misunderstood that but I guess it explains the ongoing phesgo.

@Tilllly hope they can get pain properly under control, so sorry your going through by this
@lucysmam just hard
@NoodlesandDoodles I've been trying to write a list today for Tuesday, it's all become a bit too real. All I can think of, is go wearing clothing and going to leave in, and wipes, toothbrush and snacks!
The last time I packed a bag for surgery it was for a section, and I came home with a baby!
Happy Sunday to all x

Awful signal here

On ward in isolation room - thankfully as the bays have 6 beds tho designed for 4

Morphine every 2 hours, which is making it tolerable but I'm still in pain
It's been honestly horrible, I don't understand how I can be in this much pain and them not know where from. The right rear ribs is worst but also chest back and randomly left leg.

My nurse is pretty good now but there have been some who were shocking, including one who went to get me pain relief and didn't come back, twice. Special place in hell for her.

How are you now @Tilllly ?

My friend's Mum passed in the night 😥

So sorry about your friend LucysMam

Sending love to Tilllly Hope your pain is getting better and you will be home soon with Daisy and co.

@lucysmam so sorry to hear about your friend Xxx

@Tilly I've found the standard of nurses very variable in hospital. Hoping that the one who didn't return isn't assigned to you again. Hoping they can get your pain under control, thinking of you Xxx

I'm so sorry @lucysmam
It'll be so hard for your friend to lose her mum

Also sorry to hear this @lucysmam
life is incredibly cruel.

@Tilllly ? How's it going?

Another nausea filled day for me, despite my best efforts. Ribociclib and I are just not hitting it off!

So sorry @lucysmam

So sorry you waited even longer for pain relief @Tilllly I hope she doesn't come back! And you get more attentive staff from now on.

I'm now in hospital getting ready for my colonoscopy tomorrow. I'm the youngest on the ward by a long way. I just made a night staff member jump "our patients don't usually move on their own". Bowel prep is not the nicest of activities at anytime. This time tomorrow it will all be over with.

Hope your nausea eases @Enigma52

Hope everyone is well.

Wow, my oncologist is blunt! 'you do know this is not curable and one day it will come back'.

The surgery team said my tumour was only borderline grade 3 and that radiotherapy was intended to prevent it coming back at all (it was fully removed in surgery).

I'm not sure if this is a different approach of language/ attitude or two different pieces of information.

Reeling a bit tbh. Wasn't ready to call the specialist nurse for clarity.

6 weeks radiotherapy to look forward to.

Has anyone noticed any effect of radio on cognitive function. I'm worried about this. Blunt Dr let me know all about the risks of this too.

Yikes @Catunderling that would floor most people!
Where is the radiation being beamed at? If it’s your brain then fair enough it might get a bit fried, but elsewhere it is just fatigue that is usually warned of, not cognitive impairment.

@Tilllly i hope you have caught up on sleep and are now dozy and pain free. Sending Princess Tillly all best wishes from her loyal subjects.

Yes, brain unfortunately!

sending you lots of love and saying a little prayer for you xx

Good luck for today @NoodlesandDoodles and @nappybrained.

Hope you are feeling more comfortable @Tilllly.

Sorry to hear about the blunt doctor and unexpected info @Catunderling, and hope there is some (positive) clarification once you feel ready.

@demivolte Oh I see, but in any case, it's probably good you're on Phesgo, isn't it? An injection rather than infusion over hours is certainly preferable. I found it gentler than chemo too, but I suffered a lot on chemo - I kept A&E in steady employment, so that's not such a good comparison! I also know some people who got heart failure on Phesgo though, it can also add to heart and lung problems long term it says in the papers I got. Let's just hope it works for us against the aggressive her2.

@Tilllly Thinking of you. I hope the nurses from now on are reliable and kind. I also hope the team can truly get your pain under control. xxx

@Catunderling some oncologists have lost the plot with how to communicate with patients. I'm so sorry to hear you were spoken to like that, and that the message has got so muddled, that must be truly unbearably stressful.

I only had radiotherapy to my chest, neck and axilla, not my brain so I can't help with your question using my own experience. I have a friend who had multiple (over 40) brain tumours from her HER2 breast cancer, and had radiotherapy treatment for them. She did find it made her feel exhausted, but she hasn't mentioned cognitive issues, but then she had previously had two lots of chemo (when she had primary HER2 breast cancer some years ago, and then when it initially came back again) which did affect her memory so she might not know which is causing what now. Maybe it depends where in the brain? Is there anyone at your hospital or on the team who seems knowledgeable and kind who you could ask, or maybe the radiologist? I hope they explain things better soon xxx

How did today go @NoodlesandDoodles ?

@Tilllly any improvement? I bet the lovely Daisy's missing you!

@nappybrained how did you get on?

Lots of drama here today - none caused by the NHS, all caused by my children 🙄🙄🙄 . Won't bore you all with the details atm but suffice to say I am not a happy Mum tonight!

In other news, Eras Tour jacket is almost done but I think I need to space the tassels on the back a bit more. Going to mark with pins again & then place them slightly further apart.

I am still in, I keep trying to message, but the signal is rubbish
The scan show that the cancer has spread to my bones. There is a large one in the chest and two on the spine and various other ones.
The pain is not the horrific screaming agony of the weekend, but it’s still not quite under control. About three weeks ago, my oncologist doubled both morphines, since I’ve been in they had me on the old dose… so I came in in a lot of pain and was basically being given half the medication I was having at home

I’m now on 30 mg twice a day zomorph, IV paracetamol, and up to 6 doses of 5 mL oramorph. I’m still getting the spasms, particularly in my back. The spasming pains are worse than the ongoing pain, they come out of nowhere and ambush me.

The lung nurse has been as well as Acute Oncology and the palliative care nurse. It was like having an army of avenging Angels coming to my rescue. So for a start, we’re going to see how this pain regime goes, and if the pain is managed, then I can go home ahead of seeing the palliative care consultant next week

I see the oncologist on Thursday. There is a suggestion that I can have radiotherapy to get the bone mets but I will know more when I’ve seen him.

The scan from before that showed an increase in the lymph nodes, is still fairly inconclusive, so I don’t know yet if they consider the Chemo is working and will continue. Or if the increased lymph node means it is not working and the chemo will stop
So two different things going on really

My nurse today has been really good with bringing the pain meds on time, I think the ward sister designated her specifically. I gather that the issues with all the delays and errors has been documented and is been raised. I don’t know if it will do any good, I hope so. There is something horrific about leaving your patient screaming in agony. If you can do that you are definitely not cut out to be in the medical profession.
I want to go home, but at the same time, I am frightened about being ambushed by the pain again

Floof

Lovely floof Tilllly and sorry to hear cancer has spread. I hope they can get you home with really good pain relief.

@Tilllly best puppy picture yet! I love seeing Daisy x

@lucysmam

Hope you'll show us the jacket when it's done.