Cancer support thread # 75 - come on in!

[Bloodybridget]

This is the new thread for anyone at any stage of cancer, from noticing a possibly warning sign, through tests and scans, diagnosis, treatment and beyond. Come on in for advice, sympathy and support.
The last thread is here.

If you've been on a previous thread, please come and say hello and introduce yourself!

If you are a relative or friend of someone with cancer and looking for support, there are other threads on this topic - this one is for cancer patients ourselves.

Hello everyone I got my surgery date today 16.10.20. It's such a relief to get a date and I get to enjoy some birthday 🎂 x

That's great news, Lizdeflores- chin chin! 🎂

@Luscinia thank you so much for the positive response. I had a good chat with my GP, and I think I'm going to get it done, over and done with, and I can move on and not be worrying about it.

I have also decided to stay off of my biological rheumatoid injections for the foreseeable, the four years I've been on them I've felt horrendous and not like myself, just ill the whole time. So I'm going to research alternative options and holistic therapies.

Quite a positive day all round, apart from all the crying, some relief, some confusion and some just exhaustion.

@lizdeflores great news on the op date.

I wish you well. You will have to come off your biologics anyway if you are going to have surgery (I also have RA). Apologies for all the typos in previous post.

relurking

Things move on fast round here! Best wishes to all having ops or recovering. I spoke too soon after the chemo and I think I will get a T-shirt with @balkanscot’s motto on it. Chemo is the shittiest ball ache ever!! That made me smile when I have been feeling like living death for 2 days. The kindly chemo nurse has persuaded me to take some cocodamol today but I don’t trust it.
It seems like wimping out to ask for a dose reduction but I’m not sure I can face this twice more. I’m conflicted as I don’t want to reduce the benefit of chemo. Aargh.
Stay strong people X

What is it about the cocodamol that makes you uncomfortable, TopOfTheCliff?

Good Morning @BitOfFun
It’s reluctance to take opiates and fear of nausea and drowsiness. Also I’ve been mildly allergic to pethidine in the past.
I usually stick to paracetamol but have agreed to try codeine at night. Trying not to be too stubborn!
Have a good day x

Hi everyone. Gosh it's been busy here since I was on. @BitOfFun love love your garden and pink flamingos great to heat antibiotics effective and good luck for new treatment. @Queenie8 great news for you. @Lizdeflores god that you've got date and you can enjoy your birthday. Not sure if I've missed it but happy 50th. 🥳. @Bloodybridget good to hear all went well. Best wishes with your recovery. X. @Lubballoo. DD and I loved Gillmore girls and it was our special time watching these episodes together. We used to joke we were Lorelai and Rory. At 47 I'm stretching the term 'girl' to its limit. lol.

Surgery went to plan. Lesion was removed in 4 pieces as too big to remove while. That in itself has given me anxiety as I imagine anything within it now spreading but trying not to think like this. Surgeon will be in touch when pathology results ready to discuss further. Got home yesterday and straight to bed as wrecked. Feeling not to bad but dreading first bowel movement.

Thanks to everyone for their best wishes and sending everyone a big hello. Xx

@BitOfFun, so pleased to hear you’re feeling better now the pneumonia’s been seen off. Love your improved view - are the flamingos illuminated or just very reflective? Hope it all brings you much pleasure and raises a smile when you need it.

All up and running on solar power- wish I could connect myself up! They were one of those slightly baffling fun gifts from friends which have come into their own now .

I'm glad your surgery is over, GillmoreGirl- it sounds like they've done it in as careful and complete way as possible, so please try not to worry! And sleep as much as you can- nature's best cure .

Can I just ask a quick question on behalf of a friend, she is on Letrozole, had mastectomy last year, having terrible problem with sleeplessness and fatigue, and is considering coming off it, even though it would increase the risk of recurrence. She is post menopause but only 50. Before switching to Letrozole, she was on another drug (tamoxifen?) which was just as bad. Any thoughts?

She needs to go through the stats with her onco really: there's some evidence that these drugs don't reduce recurrence enough to suffer the side effects.

I was diagnosed with ovarian cancer last year, it is inoperable so I am on palliative chemo. Finding it very hard to cope as I dont have relatives and live alone. Was initially a bit hopeful as thought surgery was possible, but it isnt. I feel as if I have a huge tumour of rotten meat inside me and its a terrible feeling. Ended up in hospital a few eeks ago with dreadful pain and needing a blood transfusion. I havent seen a consultant for about 8 months now, every time I think im getting a face to face its cancelled. Im very frightened for the future (short as it will be )

@BitOfFun thanks so much, I asked her if she knew what difference it might make to the possibility of recurrence, apparently it's 1%. Really doesn't seem worth it if her quality of life is so badly affected.

@thereisonlyoneofme I am so sorry , that is a horrible situation. Are you having phone consultations with a consultant, or are you now under a palliative care team? I feel like there should be more support available to you, especially as you live alone. When I was having chemo last year (for ovarian cancer) I had a consultant appointment a week before every treatment; of course that was pre-pandemic but I'm sure they would still have happened by phone. Do you have a cancer nurse specialist you can talk to?

@theresonlyoneofme there are no words I can offer but I'm sending you a virtual hug. This thread is a massive comfort if your feeling alone you will get a warm welcome here.x

@gillmoregirl congratulations on getting through surgery and home again, hope you've had some sleep now! How are you doing today?
@Lizdeflores that's great that you have a date - is it after your birthday? Good luck with bowels! You are taking laxatives, aren't you?
@TopOfTheCliff sorry that chemo has taken a swipe at you. It is brutal. Any better today?
@Queenie8 a hard decision to make, but if I were you, I would go for the surgery sooner, rather than waiting.
@InOtterNews as always, thinking of you, hope there is some gleam of light in your day.

Hi yes my date is after my birthday so get to have some cake and some fizz🍸 I have the dreaded bowel prep to do before the op.The surgeon wants me to do it over 2 days rather than 1 , I think I'd rather get it over and done with!

@theresonlyoneofme I can’t begin to imagine how hard your situation is but this thread and the lovely folks on here are a lifeline. How often is your treatment?

@Bloodybridget now I am on day 10 and the pendulum is swinging back to the better side. I rang my specialist nurse and cried down the phone to her about how scared I am of the next dose of chemo and we came up with some strategies. She reckons being in touch with how I feel ( ie bawling my eyes out ) is healthy and will lessen the days of misery the other end of treatment. So every crappy day of weeping and fear now will make my recovery easier once it’s all over. I’m buying that. She’s young but very good! I’m just not used to being so pathetic. But I am feeling stronger now and I have tea and lemon drizzle cake. And compared to some I am bloody lucky to have a treatable cancer.
Best wishes to you all. Storm Alex is raging here but I am warm and dry
TopO

@Lizdeflores Great news re birthday, cake and fizz. Not so good about bowel prep. 🤢.

@thereisonlyoneofme. Sending love your way. You will find this thread so supportive. A wonderful group.

@Bloodybridget. How are you doing? I hope you are recovering ok. I thought I was great today and think I overdid things as I felt very shaky an hour ago and realised my temp was spiking. Antibiotics and ibuprofen taken so hopefully bring that down. Spoke to GP who has signed me off work. Official letter sent to her stated complete removal of rectal tumour. Awaiting pathology to determine next steps!!

Hello to everyone. 👋

Just caught up on here.
Hugs to BitofFun and InOtterNews. Hello to all the others on tnis amazing thread that gives such support and kept me going this time last year.

Bridget glad you've got that op over with and fingers crossed for a good outcome. Re your friend with breast cancer. I discovered a local group of women who had bc. Fabulous women who meet up regularly (or did pre covid). All of the ones on hormone drugs seem to live with side effects and long term problems. My breast cancer wasn't hormone + so I don't have those drugs. One thing ive heard them all say is that there are several similar drugs and sometimes switching makes a big difference to the side effects.

@Bloodybridget

Can I just ask a quick question on behalf of a friend, she is on Letrozole, had mastectomy last year, having terrible problem with sleeplessness and fatigue, and is considering coming off it, even though it would increase the risk of recurrence. She is post menopause but only 50. Before switching to Letrozole, she was on another drug (tamoxifen?) which was just as bad. Any thoughts?

She needs to ask her Doctor about the possibility of swapping to Anastrozole. I had horrible side effects with Letrozole (after 5 years of relatively easy, tamoxifen).

My oncologist swapped me to Anastrozole and said they both do the same thing but hinted that Letrozole is cheaper so they tend to start people on that!

Just to say though, that I didn't get on with the Anastrozole and so swapped back but I know a few people that didn't get any side effects with it at all.

Sending hugs to everyone who needs them.

[quote TopOfTheCliff]@theresonlyoneofme I can’t begin to imagine how hard your situation is but this thread and the lovely folks on here are a lifeline. How often is your treatment?

@Bloodybridget now I am on day 10 and the pendulum is swinging back to the better side. I rang my specialist nurse and cried down the phone to her about how scared I am of the next dose of chemo and we came up with some strategies. She reckons being in touch with how I feel ( ie bawling my eyes out ) is healthy and will lessen the days of misery the other end of treatment. So every crappy day of weeping and fear now will make my recovery easier once it’s all over. I’m buying that. She’s young but very good! I’m just not used to being so pathetic. But I am feeling stronger now and I have tea and lemon drizzle cake. And compared to some I am bloody lucky to have a treatable cancer.
Best wishes to you all. Storm Alex is raging here but I am warm and dry
TopO[/quote]
@TopOfTheCliff your CNS is right. Crying big snotty tears really does help. I did a week of if before I came in. I know I was scared, it was just the first time of my saying (crying) it out loud. Also it creates a bit of time in the day for cake

I can't remember my last update. So I'm now day +12. I vomited up the feeding tube on Thursday night. It's even more traumatic than vomiting blood. They wanted to put tube back in - but I gave them my death stare and we agreed we would try liquid food for now. I'm sleeping probably about 20 hours a day. I'm still having raging high temperatures. Until they start coming down and my neutrophils start mobilising, I'm not going anywhere. I was aiming for end of next week but I shall slowly shift that goal back

I wish there was something we could do, Otter, it's horrible to hear of you suffering so much. Sending my warmest most positive thoughts .

@InOtterNews thanks for your kind words when you are only awake four hours a day. I do hope you manage to keep the liquid food down.

I was pondering on a lighter note my unexpected playlist for when it is all so bad I just want to zone out. I usually listen to Pachelbels Canon on a loop but this week have developed a weird liking for Irish folk ballads about the Struggle and sad maidens abandoned.
What do the rest of you listen to when the chips are down? I definitely can’t face my cheerful playlist some days.