Page 33 | Cancer support thread 91 - don’t borrow tomorrow’s worries

Tilllly · 12/12/2023 20:52

Doing too much is like being too sensitive. Where is the measure for this?

TopOfTheCliff · 12/12/2023 22:19

That is a very good point @Tilllly . My total chemo torpor looked just like my SILs normal life. Now I am about 50 percent back and energy is going up. I had a school report that summed it all up when I was 17. Something along the lines of "Top has insatiable enthusiasm and energy but when she overdoes it her behaviour suffers as a result".
I don't intend to settle for Half Way Better. I am going for Better than Before!

Tilllly · 12/12/2023 22:28

You go girl 💪🏻

SewingBees · 13/12/2023 07:39

I'm going home from hospital today, yay! I was starting to get a bit institutionalised - looking at the clock and thinking 'ooh, the tea trolley will be round soon'.

My back is now well and truly scaffolded, taking the pressure of the collapsed vertebrae. I saw an x-ray of it yesterday and it was quite sobering. I'm still getting pains down my left leg though, because of a tumour pressing on my sciatica nerve. My surgeon is hopeful that radiotherapy and chemotherapy will help with that. He did a spinal block yesterday which is giving some relief.

Still haven't heard from the oncology team about next steps, but the breast care nurse called yesterday and is going to chase for an appointment. I have no idea what the next stage of treatment will entail, and I guess I will also find out about long term prognosis then too.

In the meantime I'm trying to live for the moment - Christmas with my family, and planning a campervan trip around Scotland at Easter.

For today I'm excited to see something other than the inside of a hospital, and to be able to have decent coffee whenever I feel like it. And toast that's hot and doesn't taste like cardboard. Though apart from those two things the hospital staff have been brilliant.

Yorkshiregold · 13/12/2023 07:59

Yay to decent coffee & hot toast @SewingBees and I hope you recover well from your surgery!
I have an MRI scan this morning and will find out by next Tuesday whether I need a hysterectomy or chemo/radiotherapy. So basically I’m still just waiting and trying not to go too mad.

Tilllly · 13/12/2023 08:05

Oooh home and all it's blessings @SewingBees ☺️

Whatevershallidowithmylife · 13/12/2023 11:23

Hi, so have been waiting on surgery for cancerous lymph node groin removal but pet scan has shown up some hot spots in other areas so there will be no op but there will be chemo (tried this initially but didn't clear the tumour). So now I am technically "living with cancer" but not terminal. What does this even mean - chemo for the rest of my life? I'm 51. Thoughts very very welcome!

EachandEveryone · 13/12/2023 14:33

I can kind of join you on that. Have you got an unknown primary like me? My chemo half worked and I finished radiotherapy afew weeks ago which worked well as well. It hasnt gone though and ai will probably end up with more chemo. Have they offered you radio?

EachandEveryone · 13/12/2023 14:35

Im living in a tip Im so annoyed Ive been waiting to have flooring put down and the place painted the workman is barely here, I dont know whether to tell my land lord or not as he has worked for her for forty years.

Whatevershallidowithmylife · 13/12/2023 16:13

EachandEveryone · 13/12/2023 14:33

I can kind of join you on that. Have you got an unknown primary like me? My chemo half worked and I finished radiotherapy afew weeks ago which worked well as well. It hasnt gone though and ai will probably end up with more chemo. Have they offered you radio?

Hi, no, mine started in 2017 and I had radio for that. All good till last year when it returned so was given a stoma so here we are again. Sigh....

TopOfTheCliff · 13/12/2023 18:31

@Ikeameatballlunch how are you? Are you still getting side effects from radiotherapy? You’ve been quiet recently.

@SewingBees I think the only way to get through this shit show is to live for each day and look for the positives. A decent coffee, a raisin whirl pastry, a nice Christmas card. We none of us know what is round the corner.

I met my 86 year old pal today to work on my boat. We had a great time fixing stuff although he fell over once. Then we went for coffee and a bacon butty. Small pleasures! Off out now with the girls for a Christmas do. I hope to be home in bed by 1030!

weegiemum · 13/12/2023 19:56

It's so good keeping up with everyone's stories, so much going on both good and bad.

I saw the oncologist yesterday. After her terrifying me with tales of 9 weeks of chemotherapy with vomiting and hair loss and sepsis as side effects, she then dropped in that chemo only gave a 1-2% improvement in curing my cancer. Over a 5 day course of radiotherapy. So I've turned down the chemo and will be having radiotherapy in January instead.

Finally, having been on this journey of 2-week bites since September, I have a plan!

Tilllly · 13/12/2023 21:03

weegiemum · 13/12/2023 19:56

It's so good keeping up with everyone's stories, so much going on both good and bad.

I saw the oncologist yesterday. After her terrifying me with tales of 9 weeks of chemotherapy with vomiting and hair loss and sepsis as side effects, she then dropped in that chemo only gave a 1-2% improvement in curing my cancer. Over a 5 day course of radiotherapy. So I've turned down the chemo and will be having radiotherapy in January instead.

Finally, having been on this journey of 2-week bites since September, I have a plan!

1-2%?!?

Tilllly · 13/12/2023 21:04

@Whatevershallidowithmylife

Oncologists are all so bloody vague

I'm similarly placed
Can't have op
Can't have radio

So 3 weekly chemo / immuno with no real blunt prognosis

Ikeameatballlunch · 13/12/2023 21:14

You are very thoughtful @TopOfTheCliff, thanks for the nudge.

I keep meaning to post but also have found it hard. Both because I've been so very whacked out and also a bit despondent.

I am so very sorry to read about Mowly.

I hadn't realised the 5 day radio was an accelerated mega dose. Ive been floored the last couple of weeks. Also a lot of muscle aches and pains around chest, neck and shoulders.

But, 💥THANK FUCK💥 it's suddenly all gone just this week. It's very odd. And I can exercise again, though my lower back is weak. I've rowed x2, danced, done yoga, lifted some weights and speed walked the dog this week :) and could stay upright for the rest of the day!

I was a bit concerned last week as a couple of women I know who had 3 weeks radio said it didn't really affect them, so I was wondering if it was the tamoxifen. And if I needed to think about tackling discussions about coming off it. Predict was only 1-2%.

If this continues, I can manage 5 years as long as I keep up the exercise/ strength stuff. I'm working on building up tree trunk legs at the mo. 🌴 (I have to be v strong for work and also lots of standing. I've noticed it helps a lot.)

Oh and <touches wood> night sweats and internal thermostat issues stopped 2-3 weeks ago. And the BO has gone 😆

Ikeameatballlunch · 13/12/2023 21:18

I hope that everyone is hanging in there.

I will try to catch up better soon.

A side effect of more sudden energy is an chaotic brain where I am bouncing around unable to prioritise and wanting to do everything at once but not actually in reality getting much done....

Unex · 13/12/2023 21:38

Hi again

Just been to pre op assessment prior to hysterectomy and debulking.
I've found the whole pathway less than straight forward and I've got little confidence in the team sadly.
One of the biggest things is this idea of "self-advocacy ".
So they seem to expect you to know what questions to ask, and when to chase results and who to phone about scans and which secretary can bring towards an appointment and which team to chase for updates etc.
What is expected in this manner after major abdominal surgery? I've already been told to
Make sure I've got painkillers on discharge and let ward leader know if not
Make sure I've got the cutters for the staples
Make sue I ring GP with an update and get an appointment for day 10
Make sure I've opened bowered before discharge
Make sure I've got weird injection pens for thrombosis
Make sure I've got special stockings
Mane sure I start "mobilising " on day 1 or 2
Make sure I can climb stairs
Make sure I can cook food
Make sure catheter is removed on day 2/3
Let discharge team know if not
It all seems such a lot to remember, I'm going to write it down but I'm worried I'll miss something especially in the first day or so when I'll be woozy and not necessarily able to advocate for myself in the way they expect

Unex · 13/12/2023 21:57

@Whatevershallidowithmylife
@Tilllly
"Oncologists always so bloody vague "

Oh gawd yes!!
They must have special training in it!

They do like to leave you guessing

tam23 · 13/12/2023 21:59

@Ikeameatballlunch I too am currently floored by 5 days radio. Your post has given me hope - thank you.

tam23 · 13/12/2023 22:01

Agree with everyone about the vagueness of oncologists! It’s exhausting dragging every piece of information out of them and still being left feeling that you don’t really understand your prognosis.

Tilllly · 13/12/2023 22:05

It's exasperating

Why can't they speak plainly?

LuciaPillson · 14/12/2023 04:53

Re prognosis I have an idea about this, which of course could be wrong. I think that it's because they aren't completely sure what will happen in each individual case.

They know the stats about 5 year or 3 year or 1 year survival rates so they have a ballpark idea of what is most likely.

But then there are so many variables. How does the patient tolerate the treatments, are the treatments shrinking the cancer or holding it stable or not, will something sudden happen (infectious illness, other infection, fall, embolism etc) that dramatically alters the patient's overall health, are there new treatments or trials to put in place if the first treatment fails, and so on and on.

If they tell a patient they have 6 months and the patient agonises over this but then lives for 3 years, that will have caused some emotional distress, and if they tell the patient they have 3 years but they in fact only make it to 6 months, then the family may be furious and I suppose might even take legal action. So (if any of this is right) I see why, unless they are very sure with an extremely aggressive cancer or a patient who is obviously declining, they don't like to be definite.

I guess if it's a very curable cancer at a low stage they'll tell the patient there's a good chance of a cure but this is an area where sadly I have no experience.

nappybrained · 14/12/2023 05:20

Sharing joy .. After weeks of fever on those bone marrow injections, and cutting chemo dose so I didn't need them. Changed the jab, have had a full day whack of first cycle EC and no 40 degree fever..
Felt a bit shit but in the spectrum of shit, it was less shitty shit!!

Don't get me going though on silliness and GP reviews, and requests I have blood tests and blood pressure, all for a repeat of vaginal moisturisers and Movicol! Don't think so!!! Sense is not widespread

I jest but thinking about prognosis and oncologists and vagueness, makes me less bouncy. I think sometimes they just don't know and aren't so good at being able to say that. I guess uncertainty is so difficult to tolerate not only for us, managing risks ( doing that all the time), managing expectations ( hugely tough)
And then all the other stuff that is just outside of their control.
Sending all a better Thursday, so looking forward to next week and Winter solstice and the smallest positive changes in light and energy.

Tilllly · 14/12/2023 05:49

That's all true @LuciaPillson but they tend to be vague about everything

Unex · 14/12/2023 06:31

@LuciaPillson
I think we all understand the consultants don't know everything.
But they absolutely can divulge more than information than they do
A "best guess", or reasonable expectation would surely be better than leaving us all feeling clueless.

There's been several times already (and I'm only at the very beginning of the pathway) where I've not been informed of things in a timely manner, which would have made a HUGE difference to me at the time
When I've questioned this I've been told to self advocate.
If I don't even know the information in the first place how on earth am I supposed to know what to ask??
The most helpful person so far has been from a specialist oncology nurse , from the local hospital but not from my team.
He was decent enough to walk me through what had happened so far, what the various scans and tests mean and an idea of the operation and next steps.
Sadly he didn't have access to my full file because that's now at the university hospital.
The whole approach makes me not trust them tbh.