Cancer support thread #82

[MrsPnut]

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

Thanks @MissSmiley, very kind of you to send good wishes when you’re going through so much yourself. I hope they get you sorted soon, I’m not surprised you’re utterly fed up.

@MrsPnut I have gelclair and naseptin, which seem to have started working now, but my back is still so painful. I still have 2 rounds of EC left, unfortunately, it just makes to dread the treatment when you know it makes you feel so poorly.

@Silkierabbit thank you. I’ve just read your update re the chemo, how stressful for you!

Love to everyone xx

Just wanted to share this bracelet my sister gave me.
It says Fuck Cancer in morse code (dots and dashes).
She is the one channeling any anger at my situation which I am grateful for, as I just don’t have the energy!

@Podgedodge great message on your bracelet and pretty too x

I’ve seen my surgeon and the plan is to feed me via a TPN for the next two weeks, and then he’ll decide if it’s safe to do the surgical revision on the stomach join.
So two weeks feeding then recovery from more surgery. I’m going to have the PICC line inserted later today and then I’ll be moved to another ward where they can monitor me properly. I've already been here for almost 4 weeks.

I 've had a blood test done today prior to my telephone call with my oncologist on Monday. All my carefully nurtured optimism is starting to crumble and I fear by Monday midday I will of dissolved into a neurotic puddle.
I finished chemo for stage 4 ovarian cancer in December 2020 and finished a course of Avastin in December '21. I know that reoccurance is likely but waiting for 'the other shoe to drop' is exhausting.
I have plenty of jobs for the weekend to keep me distracted. My son needs a Osiris costume for Egypt day at school, a Dynamo Kiev shirt for the Ukrainian awareness run we're doing and plenty of seeds to plant ready for a beautiful and bountiful garden in the summer.
But ........ FUCK CANCER indeed

I've just realised that if I was counselling myself I would tell myself not to fear the worse until it happens.

@Runningwithoutstopping I named changed recently from FizzyOrange. I so hear you with waiting for the recurrence, it's just so exhausting and never far from my mind. I'm on Niraparib and have monthly blood tests for the usual things plus CA125 and I'm building up to this already for next Tuesday. I'll be thinking of you on Monday and hope your mind will be set to rest Xx.

Thank you @fantasea love the new name! apart from the fantasy we all share ( not having cancer) are there any others you can share? Mine are all about travel, Sun and holidays, a lottery win wouldn't go amiss either!
Thanks for your kind words and I hope you are well x

@Silkierabbit

I think we need photos of the menagerie when you have a moment? Cheer us all up.

@MissSmiley Hang on in there. I'm shocked at no sedation. Did they need you awake so they could tell it was in the wrong place when you said Ouch!!! ? I was so sedated I've no memory of being taken down at all and apparently I gave the bay a lecture in clear speech on Brexit on my return. Early Nov, 2019. It was on my mind.

@Runningwithoutstopping you're welcome Xx. My fantasies are much the same as yours really, I'm unlikely to win the lottery as I don't play it!

@MissSmiley I'm also shocked at no sedation! Not in the same league as your experience, but I had a IVC filter removed via my jugular vein last year. I wasn't offered sedation but about half way through, I felt so panicky it was awful. Thinking of you in hospital for so long Xx

Afternoon everyone, how are you all doing? Been a bit under the weather again today, but spent some time putting up some pants this morning in the sunshine which was lovely then have been shattered ever since so have been watching A Place In The Sun and dreaming of sunny places all afternoon!

Never knew there was so many cancer related adverts, literally every ad break, it’s relentless. Can’t even have half an hour away from it 😕

Hi everyone

They didn't do the PICC line yesterday, I have to wait until next Wednesday, that'll be 9 days without any nutrition, apart from making surgery even further away I'm starving hungry and will likely lose weight with only a drip to keep me hydrated

I had a visit from the three youngest kids this afternoon for an hour and then slept for an hour and a half to recover. It was lovely to see them.

I'm feeling very homesick in general

Revving up for my operation on Tuesday… had a lovely lunch in the sunshine at our local stately ‘ome. Now getting ready for tomorrow’s covid /mrsa swabs and thinking about starting to pack nighties and phone /tablet chargers. I have treated myself to a splendid headphone-headband device to hide from the noise of hospitals and snorey /shouty neighbours but failed to take into account the fact that it makes me look like a huge boiled egg, with my bald head sticking up through it.

PLANTS!!! I was potting up some plants, not putting up some pants!! That’ll teach me to proof read! 😂🙈

Ah @MissSmiley…you’re having such a bloody rubbish time 😕 sending you all my love xx

@MrsWooster you made me laugh out loud then 😊 that sounds like a fab gadget! Good luck for tomorrow and Tuesday x

Thyme Here are the pets, Silkiecat on DHs piano, the silkie outside and rabbit with DS.

Sorry they are delaying your operation/PICC line MissSmiley Glad you got to see your children.

Feeling really bleugh today, think I have a uti still, typical don't have one for ages then when chemo is looming I get one. I have done 1 lot of antibiotics which helped but think its still looming.

I also dream of holidays though between cancer, covid and Ukraine not looking too promising so I am having to settle for watching Below Deck and dreaming.

Have been looking into ways to avoid peripheral neuropathy and ice seems to help. The hospital don't offer cold cap so DD and I were trying to think of how to replicate it. We came up with a frozen packet of peas held in by a rugby helmet. Well DD came up with a frozen watermelon on my head and a rugby helmet but not sure my head is watermelon shaped. DD said I will get strange looks but don't really care. I also told DD I am ordering lots of ice lollies and had to check with her what flavours she will not take. It seems to advise ice for hands and feet too. I will look amazing. It will probably fail but will keep me occupied and the nurses entertained.

Thanks podge DDs school are really good and both schools knew straight away. Hope the work situation has resolved.

Good luck for the operation MrsWooster

I hope you can do something nice for you Running It must be so scary with stage 4, I hope you can take some nice breaks, do a hobby etc so at least some nice days.

TwoNoisy Hope you feel better soon and hope the plants look nice soon, at least I assume it was plants and not pants you were putting out

Love to everyone else.

Thanks silkie it is difficult but a lot of the time I can bury it in order to carry on living my life.When tests are needed it all floods back in.
I read through the thread regularly and I realise that so many are going through difficult times. I wish everyone a peaceful and relaxed Sunday and brighter days to come x

@Silkierabbit

Aah. An old-fashioned cat, on an old-fashioned keyboard. She's just an old-fashioned girl....Eartha Kitt. And friends.
And I must say I like the sound of your dd and her advice on wigs. I was wondering whether I could get away with a Chrissie Hynde at my age, but in the event I only had oral chemo and kept my hair.
Hope your UTI is on its way out. Sod's law. Like cold sores, always at the wrong time.

@Silkierabbit you should be able to get hand and foot specific ice packs on Amazon if you are looking to ice during chemo. You will need multiples to swap in as they warm.

@Runningwithoutstopping - its all pretty shit, isnt it? Im also pretty good at burying the situation, but you can be having a great time or in the moment doing something else and a little voice always pops up to remind you. I just went finished conventional breast cancer treatments to treat some progression, and its been tough to deal with the fact that while surgery/rads is the end of treatment for most, for me its just a brief interlude before starting a new treatment line with who knows what side effects and efficacy time. But you are right - no use actively worrying until its time to worry!

@Silkierabbit yes indeed, plants not pants 🙈😄 hope you’re feeling a bit better today x

@Runningwithoutstopping and @HerbalRefreshment I need to try to compartmentalise better…I seen to be 5 seconds away from full blown tears all the time at the moment, it’s exhausting 😩 yes to that that little voice that comes and punches you in the gut if you dare to forget for 5 mins…! Urgh!

I had my wig consultation on Friday and came away with one that looks very much like my old hair. The women helping me couldn’t have been better, so kind and empathic and I sobbed my way thorough the whole appointment. Literally have no control over my emotions at the moment 🙈

@TwoBigNoisyBoys it's ok to feel like that, I've been the same since Friday but I don't care, we're allowed to feel emotional sometimes

@Silkierabbit great post and lovely cat, we have a lovely farm tabby

To everyone else, I'm thinking of you all

I might be getting my PICC line tomorrow or Tuesday now, everything is still uncertain. I've had new cannulas and sub cut lines in tonight and I'm so sensitive to even the tiniest amount of pain, I just feel poorly but I don't know why. The nurses are looking after me.

If you have weekly Taxol do you have to have a port, and do you have to go for a blood test every week beforehand ?

@thereisonlyoneofme You don't have to have a port or picc line but your veins do deteriorate the longer you are on chemo. You do need weekly blood tests before each chemo because of needing to check neutrophils etc.

@MissSmiley I hope the pain has subsided and the poorly feeling passes.

@TwoBigNoisyBoys I hear you, I'm finding my ability to cope with it all is reducing as time goes on. People are expecting me to have finished treatment and I'm having to explain over and over why I haven't been able to. Having a big messy cry every few days does seem to be quite cathartic though.

@Silkierabbit Silkiecat looks like a shorter haired version of our cat, she's another old lady with high demands.

@MrsWooster I hope your operation goes smoothly tomorrow.

@Runningwithoutstopping Hope your oncology phone call gave you the news you were hoping for.

I am absolutely exhausted today after the weekend away, I wasn't even staying in the hostel with the girls but I walked absolutely miles every day and Newcastle is very hilly. It made me realise how much my life has changed since I entered cancerland and I really don't like it.

The girls all had a great time though and we got them all back in one piece and delivered to their parents.
I've got appointments with both oncologists this week and hopefully we can make a decision about radiotherapy.

I got a message back from school about the special consideration for gcses and they say as my cancer "is long term and planned" it does not count as a life threatening illness at the time of exams. And it would require forms filling in. I am querying this with the people who set the guidance as nowhere does it say it has to be a short life threatening condition or a quick cancer or an unplanned chemo if such a thing even exists which I doubt. I would presume you would have to be in active treatment but I will be undergoing chemotherapy then or radiotherapy unless it goes wrong. It is apparently after you apply though glad I checked if they are saying no. And DSs school have decided to say they can't meet needs and he needs to find another one mid year 10 and the LA who control his ehcp are saying he can't change. DDs school are normally great so was quite surprised by exam stuff though I think they genuinely believe that. She will likely be fine anyway but it made her much more happy whereas before she was panicking about me doing chemo.

I am doing weekly Taxol. Initially no PICC or PORT but the chances of getting through 12 with a cannula are not that high so would imagine at some point will have a PICC fitted, they said in my case would be a PICC. At my hospital the blood tests are three weekly for it and covid test has just gone to lateral flow photographed on the morning of it but check with your hospital what they do. I checked today and there is no isolation during it now but they advice being very careful during chemo. They even said I could go swimming but not sauna or steam room and be very careful in changing rooms but when have gone recently have not used changing rooms and took gel and was fine. Obviously don't know if I will feel up to it but happier its there.

MissSmiley If your cat is anything like mine (17 and makes her voice known ) I would seriously consider bringing her in now to get things moving. If not I can send you Silkiecat then your chances of being operated and home within the week will shoot up as she will demand food 24/7 even when she has plenty and also scratch all the staff. I hope you get some progress.

MrsPNut A long haired tabby must be lovely apart from the high demands I wanted a long haired tabby but DH said he did not want a cat but I could get a short haired one. 17 years on and DH is inseparable from the cat and he is her chosen servant and he tells her he always thought he would be a dog person but now he realises how much better cats are. He is getting a hearing aid fitted this week for first time and I think he will be shocked how loud she is. Good you could get away.

I just seem to sleep at the moment though probably may as well sleep when I can. They said I can take vit D and anti histamines during treatment but not general vitamins. The nurse was not bothered by the result saying CKD stage 2 she said they just have some weird results with that one. I asked if would be put on low dose antibiotics and she said no though would prefer I was as once I have a uti I tend to get a series of them but guess I can phone each time.

I ordered a special rubbish collection which is the highlight of my week this week, shows how exciting my life has become Loads of very loudly singing birds outside which is nice just adding to our zoo.

Thanks for the Amazon gloves and socks recommendation. I may get some of those, was not sure at first as they only last 20 minutes but probably easier.

Love to everyone else.

Thanks for the kind wishes annoyingly my CA125 levels weren't back with my oncologist in time for him to give me the results😡 However all's good and he will be in contact in 6 months as long as it stays that way.I hope other peoples meeting and appts go well.

I went for lunch with a friend and came home with our cat many years ago, but then we got the dogs when he wasn't keen and now there is no love like that between a dad and the dogs he didn't want in the first place.
Our cat is half Maine coon and so is super floofy, in fact her nickname is big floof, she likes to sit at the top of the stairs and intimidate the dogs.

Have been following this thread for a few months.
Some very brave and inspirational people on here.

Now it time for me to ask a question.
I've been on letrozole for 12 months after breast cancer.
I have got side effects of hot flushes. My Macmillan nurse
advised me to take Sage tablets which I bought on line I've taken
them now for 8 months. On Saturday I called into Holland and Barrett
who refused to sell them to me as I shouldn't have been taking because
of the cancer.
I've left a message on the answer machine for my nurse but still waiting
for her to call me back.
I know I shouldn't but I've been googling and I'm now concerned.
As anyone else heard that you shouldn't take Sage and what does
everyone else take for hot flushes.