Cancer support thread #77 - newbies welcome

[InOtterNews]

I couldn't see new thread so here we go...

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh)

Good news about the ESA @FizzyOrange was I also receive this and I have reached the dizzy heights of not having to send in fit notes. The DWP have finally accepted that my stage 4 o c hasn't just gone away!
I'm not sure what the protocol for maintenance. drugs is I know my oncologist talked about it as part of the plan before I started treatment. I have had 3 now(Bevacizumab) and so far I have found it less taxing than chemo. I definitely get some joint stiffness but that seems to be it at the moment. Listed as a serious side effect are bleeding and high blood pressure. Before cancer I was having 8 weekly infusions for Crohns,so I think I have been able to adjust to the new regime quite easily as it's been my normal for the last 7years.
I'm due to meet with my oncologist next month and I want to ask about the parp inhibitors especially Niraparib that has just been approved for use in women without BRCA gene.

@BloodyBridget I was sorry to read your latest news I know it's like another punch in the guts even if you are expecting it.

Evening all. I have been turned down by the FRAME trial as I was too cheerful on their questionnaires. They are looking for anxious and depressed cancer patients who have finished main treatment but can be on maintenance. It tests two methods of building resilience but I obviously have too much for them!
Today was excellent as my wound has finally healed after two months and I did a lower body gym session and an online upper body weight training session. I then had to go to sleep. The radiotherapy doesn’t seem to have kicked in yet. I am on Day 10 and the gloomy radiographer said it would be worst at two weeks. Fingers crossed I get lucky for once, having had almost every complication along the way.
I am trying to eat well for healing and weight loss and muscle building. Lots of fresh stuff and at the moment I am eating meat although I usually don’t have much. Luckily the Herceptin gives me slight anorexia as well as nosebleeds which makes it easier to hold back from eating everything.
Having finished radiotherapy I don’t feel happy or sad - just another step along the road. It’s a matter of keeping on putting one foot in front of the other. Plod plod plod.
Have a good weekend if you can with crap weather and lockdown folks
Top

May I join please? I don’t know if I should be here, but I’ve recently had a biopsy due to a lump found and an unknown ‘something’ showing on the MRI, and am waiting on results for possible breast cancer. I find out this week. There is a strong family history and I am gene positive, so whether or not it is cancer I will be having a double mastectomy (in a few weeks) and oorphrectomy and hysterectomy.

At the moment I feel like I’m in no mans land, or a dream, just waiting for the outcome and it’s uncomfortable to say the least though doesn’t feel quite real. Silly as it is, I’m most worried about telling my family if it does turn out to be something, and dealing with their reactions.

Welcome to all our new posters. Sorry you are on this thread.

Today I went for my oncologist appointment and told that I don't need chemotherapy.
I'm having a bone scan soon as they found hopefully just a cyst on the top of my spine.
Will be having Bisphosphonate treatment after my dental appointment.
I've been prescribed hormone tablets Letrozole. Just read the leaflet about the side effects enough to scare anyone.
Is it best to take morning, afternoon or evening?

@FizzyOrange this is my second go round with chemo; after my first lot in 2019 I wasn't on any drugs. Now the tumour has metastasized, it's almost certain that I will have further metastases, so the PARP inhibitor is intended to delay them.
@Skap thanks for your kind message. DP seems to be ok with things, she knew I was expecting to have it confirmed that it's stage 4.

@Bloodybridget ah I see. I do hope they work successfully for you.

@Lizdeflores I am really pleased about the ESA. I think a cancer diagnosis attracts the higher rate too but I mustn't be greedy lol, presumably this will be decided once they get my assessment which the nurse signed. Joint and bone pain are one of my main side effects on current chemo but I have prescription painkillers for this which makes it manageable. There is so much to consider with all of this I am finding.

@Percivalthebabyspider welcome to the thread none of us wanted to join but also the nicest place on MN with the loveliest ladies. I am well into my treatment and it still doesn't feel like it is happening to me! It isn't silly to worry about telling your family, it is completely normal to fear their reactions and to want to protect them.

Hi Ladies,

I hope you are all as ok as can be. I finally have my appointment for the breast clinic for next Tuesday. Can I ask what will happen on the day?

@loubieloo4 when I went, I was examined by a nurse and then went to a different room for a mammogram. Then for an ultrasound which is where they took biopsies under local anaesthetic and inserted a whisk marker into the tumour. Finally back to mammogram to check the marker was in the right place before having a chat with the first nurse and one of the breast care nurses to tell me that I had cancer.

I was there for a few hours altogether which was longer than I had thought I would be but there was nothing painful and all of the staff were lovely and friendly.

Thank you fizzyorange. I’ve been reading through and you are all so lovely and supportive of each other. I’m so sorry you’re all going through this.

It’s all new territory for me, I only found out I was gene positive after a couple of close family members were diagnosed and the mass was only discovered in the past few months. Now I’m just waiting for results.

The mastectomy doesn’t bother me so much, I already decided to have a preventative one before the mass was discovered, but the reaction of people when they find I’m not having a reconstruction does. It’s not a decision I made lightly. And losing my ovaries and going into instant menopause bothers me most of all, though compared to what so many of you are going through it’s nothing.

I suddenly feel like ‘the patient’ and not ‘me’ if that makes sense. It’s all a very strange new world.

loubieloo4 I met with a nurse who went through all the history and health info, then an ultrasound where I had the biopsy under local anaesthetic (a nurse held my hand all the way through) and they inserted the marker. Then a mammogram. I need to wait for results then discuss the next stage.

Welcome to all newcomers. It's very comforting to have this thread where you can say anything, and in my case, have a right old moan!

I'm still unvaccinated. My GP actually phoned to offer me the jab when I was sat having my last chemo. I've worked out there's a 4 day window each 3-weekly cycle where I would feel ok having it so maybe will get it on my next cycle. My oncologist prefers the Pfizer one but said any is better than none.

I also found out that I should've been having the chemo IV in the arm on the side unaffected by BC in case it buggers up the veins for later surgery on the affected side. No-one said anything about this to me at any time so I've had it on the affected side and now have phlebitis in my left arm (vein inflammation). I'm being prescribed hemorrhoid cream for it!!

And I've got another anti-sickness regime to try for next chemo: travel sickness patches and lorazepam. Bit nervous about the sedative but at this point will try anything...

@MrsPnut Your recent treatments sound very gruelling. I had a hysteroscopy without pain relief before I'd had children [shudder]. You really are a trooper committing yourself to it

Today I feel less than my self. I feel like I'm "BadEyeBri with cancer" rather than just BadEyeBri. I don't really want to talk about it to anyone. I'm sad and worried but I don't want my every move scrutinised. I don't need the world to know. I just want to very quietly have my treatment and hopefully pick up my life again. Sympathy makes me uncomfortable and pity makes me angry. Then I feel awful because people are just trying to be kind.
I feel so passive in all this. I'm a bit lost.

@HauntedDishcloth if you book your own vaccination at a centre you can choose the day - that's why I did it that way. Doesn't seem to be much Pfizer about these days. I'm also preparing to tweak the anti-nausea meds. Onc has added cyclidine to the mix and hoping to get more ahead of it this time. Nausea is quite miserable.

@BadEyeBri there isn't much opportunity for scrutiny these days - and it seems everyone has so much shit going on in their own lives. Is it particular people you are wary of? Personally felt that my treatment was just too long (over a year) to keep secret. People (particular people...) do sometimes say stuff that makes me grind my teeth although I know they mean well. But there are a couple of people I can talk sensibly to so that makes telling worthwhile (especially since dh isn't one of them ).

Afternoon ladies

@Doyoumindifislytherin drop in anytime, sorry to hear of your diagnosis. Good listeners on here.

@Percivalthebabyspider welcome, happy to hold your hand while you wait.

@TopOfTheCliff did have to laugh at being too cheerful on questionnaires. Glad you still feel ok.

@MrsPnut what an annoying mix up about the mammogram. Grrhh to your car, what a pain. Thankfully DH sorts my car as he's in the trade.

@Bloodybridget side effects are truly the work of the devil. My heart is still thumping, cannot wait until Wednesday when I go for my bloods then I can talk to the nurse.

@SerenaTuccot good luck with your next stage of treatment.

@FizzyOrange good news regarding your claim.

@Skap black toe nail, what a bummer.

@Noidea2114 yay to not needing chemo. Not sure about the tablets, check with your GP.

@HauntedDishcloth they always used the opposite side to my tumour but if you haven't had an op it doesn't matter so much and they had to use my right hand last week before the PICC was fitted. I'm going to ask for the next tablets up from the ones I'm taking.

@loubieloo4 when I went I had an inspection then a lovely pen circle to show where the lump is, then a mammogram and an ultrasound. They did the biopsy at the same time as the ultrasound. Put a clip in then another mammogram to check it was in the right place.

Absolutely fed up with the pain of my PICC, can hardly move my arm, am hoping this will pass. There is no swelling or redness, just pain

Got another letter saying I need to shield until the 31st March now. What are we supposed to do about school runs when they go back in March?

Off to have a bath. Can't even soak my poor arm in hot water.

Big wave to everyone else.👋

HC x

@BadEyeBri I feel exactly the same! I am working overseas so it has been easier for me not to tell any family or friends back in the U.K. I have 2 close friends and work colleagues here that I had to tell and they have been brilliant. I am on the home straight now and have suggested to DH we don’t tell anyone when we get home! Unfortunately will have to tell certain family members as my cancer is due to genetics and they will need to consider testing. Hopefully though I will have a full head of hair by then and look (almost) normal to avoid any sympathy or aren’t you brave crap!

Treatment here has been brilliant and loved nearly everyone though I have some radiation treatment starting soon and it was a British radiographer who infantilised the process by (over) praising my ability to breathe as well as being able to hold my breath when asked (in a way that would have been insulting to a five year old!). I smiled through gritted teeth but could happily have punched her! I’ve had my tits removed dear not my frontal lobe!

I do feel (almost) me now and am picking up life again, which is nice - and you will too 💐

Also 💐 for @InOtterNews and hoping all is well

@HumphreysCorner when I had my PICC put in the nurse said use a wheat bag or hot water bottle for pain. It works really well packed up against it. Hope it settles down xxx Top

Just to say I am home and happy.
Double mastectomy went well on Thursday and I am very happy flat.
I was very very sick so stayed in two nights while they got on top of that but came home today.
Drain was taken out a bit early as it was catching on a nerve and making me shout every so often.
But all in all I am a happy Trumpton to be on the other side of it all.
And that’s me over and out !
Thank you, you lovely ladies for being the best ever for me xxxxx
Sending huge hugs .

@Trumpton so pleased to hear all went well. Now rest as much as you can.

Anyone had an ileostomy , think this may be my fate and wondering about coping with it. It seems harder to live with than a colonscopy

How do you edit on here please? cant you edit once you have posted.

I don't think you can edit. You can report to MNHQ and ask for your post to be removed or you can just repost a clarification

@thereisonlyoneofme can you remind me - is this due to bowel cancer? Dh had his colon removed and had an ileostomy for 6 months before having a further operation to make a false reservoir from the end of the small intestine and so remove the stoma (this was 20 years ago). I think some ladies on her have a stoma and are waiting for the second op and can tell you more - not sure which kind of stoma they have but ileostomy, as far as I know, is easier to manage and reverse.

@TopOfTheCliff I also laughed at you being too cheerful for the trial. Are you done with radiotherapy now? I'll also be on Herceptin maintenance to interested to hear how that goes too.

@Trumpton great news

@HumphreysCorner that sounds really uncomfortable and would make me quite miserable (is that a helpful comment though not sure!).

Acinonyx2
Its due to ovarian cancer. From what Im reading it seems to be more "productive " than a coloscopy

Do you think this is bruising or it's becoming infected as the redness is spreading. 😭

You mean compared to a colostomy? It's a different kind of productive from what I understand. Dh managed quite easily with his but he had been very ill beforehand which meant it was a real quality of life improvement - so much so we seriously considered not having the reversal (which in his case, having no colon, was a much bigger op than your reversal would be). Is yours likely to be temporary do you know?

It's not the kind of thing anyone would look forward to - I know I wouldn't! But having seen dh go through it - it's more manageable than I might have expected. Don't know about you - but I'm quite squeamish generally and dh isn't at all.

@HumphreysCorner I went through weeks of 'is it infected or not' with my port. Call the emergency number - and send them the photo. In my case the hospital just kept asking if I had a temperature . Eventually I asked to see a nurse at my local practice - she wasn't sure and called in a GP who prescribed antibiotics and I was a new woman 48 hours later (my nasty cough also went!!). So worth chasing - in case.