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

[Silkierabbit]

Thanks MissSmiley Gentle big hugs back to you. Sorry to hear you need to be tube fed but hopefully will make you stronger and help your recovery. I hope you can get home before too long.

Welcome Catzrulz So sorry to hear about your diagnosis and hope the PET scan goes OK.

Just spoke to my Italian friend and she cheered me up and said could call her anytime.

[Fantasea]

Evening lovely ladies, FizzyOrange here, I name changed recently. I've been reading the thread regularly but not posting. I'm sorry to hear of all the struggles and sad to see so many newbies. The reality of living with cancer has dawned on me recently, I'm stage 3c OC so it's only a matter of time before the beast comes back. I had a (clear) CT in January but conversely, this has plunged me into the reality that this is the rest of my life now, never free of appointments, tests, scans and the worry worry worry. Being on daily oral chemo means that my side effects, though mild, pop up fairly regularly. My CNS has recommended some group therapy which I'm seriously considering.

@MissSmiley like @Thymeout I also had a TAH and my bowels took ages to get going properly and the wind pain was horrendous. You've certainly been through so much.

@Podgedodge I don't think you should be trying to do anything apart from rest. Each chemo cycle hits you harder and the effects are cumulative. How are you feeling today? Can you call the chemo unit to get some advice? Or perhaps ask for a GP telephone call?

[Thymeout]

@MissSmiley.
I must say I’m impressed by the way you seem to be making your doctors take the concept of consent seriously. I just lay back and did what I was told.
Will be thinking of you tonight. My bloods showed up some deficits and they did an overnight tube feed. Every time I shifted position in my sleep, the tube kinked and alarm bells rang, which didn’t endear me to the nurses. But I suppose at least I felt It had been used and I hadn’t been chained to the wall for nothing.

@Fantasea
Good to hear from you! Group therapy sounds a good idea. Hope you get signed up soon and it helps.

[TopOfTheCliff]

Evening all. I got the railings painted but the builder cancelled today as his son was in Hospital. I’m having a lazy day or two to stay home and make tea for them if they ever turn up. I was aching all over and decided I need a few days of slobbing about for a change.
Hope you are feeling a bit better @Podgedodge - do get checked to make sure you aren’t anaemic.
@Silkierabbit I was pondering the state of the world and thinking it would be very annoying if I had gone through all this treatment to prolong my life and then WW3 comes along and we all go up in a mushroom cloud! It’s like the four horsemen of the Apocalypse are circling round my house. I am lucky that I don’t get anxious I just make terrible jokes. I have become a news junkie and spend all day watching videos of people being amazingly brave in Ukraine. It isn’t very good for my mental health though, I shall have to ration it.
Hope you are out of confinement @MrsPnut, and got through Covid unscathed. All my neighbours have now had it but DH and I have dodged it (and them!)
@TwoBigNoisyBoys it does take real courage to go back in for the next dose knowing what is to come. Just think of us as the invisible army behind you cheering you on. You can do this! We did, and we were scared too.
@balkanscot could some of your weird pains be neuropathy from chemo? I got twitches in my face and pains in odd places as well as my hands and feet.
@HerbalRefreshment I didn’t really get any fatigue from the five intense blasts of radiotherapy, or any side effects at the time. Six months on my boob was still tender and I still have nerve pain and some swelling around my side but that was the surgery not the radiotherapy I think.
@catzrulz welcome! Are you a Scot? I am coming up your way in the spring and summer on my round Britain adventure.
Regards to all, be brave and try not to worry too much.
Top xx

[TopOfTheCliff]

Waves to @Thymeout and @Fantasea and @MissSmiley, I remember as a junior doctor having to go round the post op patients checking for bowel sounds every day till their lazy bowels woke up again. Every fart was a welcome sign!
Top

PS @KitchenFishCurry it was great to meet you at the 5k your Way.

[Podgedodge]

@Fantasea @TopOfTheCliff, I am feeling a bit better, thank you. Mainly because I’ve accepted bed is the place to be! I reported how I was feeling at my pre-next chemo call today and had my bloods taken for chemo5 today, so hopefully that’ll show if anything amiss. It was very hard to take them today as my veins are hiding. With that and the trouble with the cannula last week I am very much afraid a port is going to be necessary, which I really don’t want.
On a brighter note, I got a lovely care package from work yesterday, ncluding socks and suckie sweeties which really cheered me up as I feel a bit isolated, but also don’t feel up to meeting people!
@MissSmiley I totally get you not wanting to be tube fed, but it really helped my DH, taking the pressure off him to try to eat and giving his body some much needed strength. I hope it’s just a quick fix and everything starts doing what it should soon.
Welcome to those who have joined recently. I think it’s inevitable a cancer diagnosis brings with it a certain sense of disbelief, also the world situation atm is very unreal. Nothing seems designed to help our peace of mind does it?

[Fantasea]

@Podgedodge my veins went the same way as yours during chemo, it regularly took at least 3 attempts for most blood tests/cannulas and the record was 5 when they had to rope in an 'expert' from another department. I vehemently resisted a port or PICC, I'm not a glamorous person but didn't want anything 'there' especially not hanging out of me to remind me of my diagnosis. Instead my arms and hands were constantly bruised which at the time felt preferable. What I would say, is drink loads before a blood test/cannula and also make sure your arms and hands are warm. Make sure you're overdressed so overall nice and warm but particularly jumpers and gloves, it sounds mad but it saved me. I'm now on monthly blood tests 8 months after infusion chemo and my veins still produce this face from the phlebotomists 😮, but they still can strike gold on their first attempt with a children's needle most of the time so they must be recovering a bit. Good luck, it's just another thing to put up with when you're feeling otherwise rubbish.

[Rugbycomet]

Good Morning. Unfortunately I too, have decided to join this thread. I’m not in the UK but after having a huge lump excised at the end of Feb from my armpit, I was told last week I have melanoma. I’m scared shitless. Got a PET scan tomorrow. I have another lump that’s appeared above my breast. I fear it’s in my lungs and creeping up my neck into my brain. I seem to have a constant dull headache. Hoping it’s stress related rather than sinister. At the moment, they don’t know where the primary is,. I had 2 CT scans prior to my op and nothing showed up.
Sorry to offload. Am trying to keep strong for my DH. My grown up children don’t know yet. They are living in the UK. I thought I’d arm myself with the facts before speaking to them.

This thread makes me feel not alone but I am so sorry for others on this thread. You are all so amazingly strong and positive.

[MissSmiley]

@Rugbycomet I'm really sorry you have found your way here, definitely good to have as many facts as possible before speaking to your family, but don't put it off too long, I wish I had been honest sooner with my teens.


I had a visit from my surgeon this morning. It's not good news, the NJ tube has moved so they can’t use it, they need at least another week to see if my bowel will wake up but they have to “feed” me during this time so he’s ordered a procedure where they’ll manipulate the tubes with the help of fluoroscopy and see if they can get them in the right location, otherwise it’ll be back to theatre to re position. If after another week my bowel still hasn’t woken up they can’t do more surgery if I haven’t been nourished for three weeks. He’s really apologetic but he doesn’t know whether he made a mistake with the join or whether it just needs more time for the internal swelling to go down. I'm not going home any time soon, I'm missing my kids especially the youngest three who I had hoped to spare a face to face with the nasal tubes but I think three weeks is too long to not see each other so I'm making arrangements for them to come in this weekend hopefully. They are 11, 14, 14 so not babies but I think not seeing me at all is worse than seeing me with tubes

[Rugbycomet]

@MissSmiley

Thank you for your kind words and I’m so sorry that you’ve not had the good news you were hoping for. Keeping my fingers and toes crossed for you and you’re right, I’m sure your children would rather see you than not. I’m sure you want and need to see hem too. Virtual hugs

[Rugbycomet]

Them not hem

[Thymeout]

@Rugbycomet
I saw your post literally minutes after reading an article in the Mail-online about a new treatment for malignant melanoma. It's a step on from immunotherapy, involving T-cells. Retired nurse, living in Bath. Remarkable results. Large lung secondary disappeared, etc etc.
Haven't seen anything in broadsheets yet, but it's always good to read positive news.

@MissSmiley So sorry to hear latest news. Hoping that dcs will surprise you in their reaction to tubes. Ime, children can be remarkably un-squeamish on occasion.

[Rugbycomet]

@Thymeout….yes, I saw this today too. I’m going to mention it to my oncologist after the PET scan. He only mentioned immunotherapy but I’m seeing a Melanoma specialist next week. Hoping she’ll know about it.
Thank you for thinking of me and I hope you are ok.

[thereisonlyoneofme]

@Fantasea Hi, seen you hadnt posted for a while. Im same as you stage 3, clear scan in January! long may it continue.Im on Niraparib 100mg as couldnt tolerate any higher. Its horrible waiting for the other shoe to drop isnt it. I could cope better if I thought that this cancer was beaten but its not likely. Ive developed a hernia now on the op scar and oncologist doesnt want to do anything about it!
Ive been taking myself off to the theatre and booked a short break away again with dog. Making the most of time and spending the rainy day money !

[Fantasea]

@Rugbycomet I'm sorry you find yourself here but lots of great advice and support available

@MissSmiley I'm sorry it's not the news you were hoping for. I too would think your children would prefer to see you with tubes rather than not. It must be so hard for you all though, I'm hoping you get see them soon.

@thereisonlyoneofme we seem to be on exactly the same path but I'm on 200mg Niraparib. My worst side effect is the fatigue, I really have to be organised and pace myself. The fatigue seems to be coupled with a sore mouth and tongue, as soon as my mouth is sore, I know I need to stop, quite a helpful barometer really. My onc finds this puzzling but my CNS said it made sense. I'm really sorry to hear you have a hernia, I'm on an FB group for OC and it seems very common. I've read that they don't like to operate as this would involve a mesh which might mean that should you need further OC surgery, it wouldn't be possible. It must be hard to live with though, many of these ladies have a wide belt they wear over theirs, poor you. Good for you on trips and treats!

[PaddingtonStareBare]

Just a quick one as heading into hospital again, but I am now in full metabolic remission! 😁

[MrsWooster]

@PaddingtonStareBare

Just a quick one as heading into hospital again, but I am now in full metabolic remission! 😁

That’s brilliant!

[TwoBigNoisyBoys]

Thanks for your good wishes everyone ☺️ very much appreciated. Chemo tomorrow, so I’m hoping the adjustments on the dosage and the follow up injections do the trick…dreading feeling as ill as last time.

Sending everyone love, as always xx

[MissSmiley]

@TwoBigNoisyBoys good luck for tomorrow, will be thinking of you

@PaddingtonStareBare that sounds like great news

Hi everyone
I've been moved to my own side room, they needed to shuffle beds and I was the least ill so I got the side room, I was really sad to be cut off from my new pals who I've been with for a fortnight but actually the room is really quiet and I can still go and see them in the main ward.

Hoping to have this feeding tube procedure tomorrow, it keeps getting delayed, I'm hating the limbo I'm in at the moment, I can't eat anything and need my stomach aspirating if I even drink tea or juice. We're giving the bowel another week to come to life before they'll do surgery to check the new join if the bowel to the stomach.

[TwoBigNoisyBoys]

Thanks @MissSmiley, I keep reading your updates, and I really hope things start to improve for you soon, it sounds so hard for you. Sending you lots of get well wishes! Xx

[Silkierabbit]

Hope you can get the procedure today MissSmiley and your stomach comes back to life in the next few days. So sorry you are going through such a difficult time. Am glad there are people in the hospital you can chat to.

Results delayed a week here, just hoping its only a week, its prosigna results to say chemo benefit though think if they are not back will make a decision on Monday either way. Just harder without all the data. Had my covid booster today so at least that is done and needed it before chemo and / or radio anyway. It was apparently Pfizer day. Had quite bad reactions to first two AZs so hoping this will be easier though some of reaction turned out to be breast cancer (rib pain and lump in breast). OK so far. DH, finally after about 15 years, managed to get him to go for a hearing test / hearing aid consultation, always refused saying would make him old and he not only went he got hearing aids, came back mumbling about the £1900 cost but if it brings his hearing back well worth it. They said he has moderate hearing loss in both ears.

Silkie and rabbit are very happy together, silkie is getting very noisy for 15 mins a day when she lays an egg but for some reason that has made the 17 year old cat with dementia much quieter so balances out and silkie is so chatty with us.

Hope chemo is OK today TwoNoisy and a lower dose.

Hope hospital goes OK today Paddington

Hoping the Putin situation calms down too Top and yes think its best not to watch all the time.

Love to everyone else.

[Podgedodge]

Managed chemo cannula today so no port yet,yay.
Long day tho, treatment 10.00am till5.00 pm, and had to wake at 4.00 to take 10 steroids first. Am in awe of the medical minds who work these things out!
Also, first treatment .I didn’t get emotional, so counting whole experience as a win!

[Onewildandpreciouslife]

Hi @Rugbycomet welcome to the thread but sorry you find yourself here. I haven’t posted on here for a long time (and I have changed my name from when I was a regular) but I was diagnosed with melanoma 3 years ago (stage 2c vulval / vaginal melanoma).

It’s common advice on here not to Google, and that is especially true with melanoma - immunotherapy has revolutionised melanoma outcomes over the last few years and lots of info on the web is out of date.

Good luck with your next scans and appointments. Happy to answer any questions I can. Because the treatment plan is different for melanoma from other cancers (no chemo usually) I found it a bit frustrating that people made wrong assumptions about me. The melanoma forum on the MacMillan website is very good.

[Rugbycomet]

Thank you @Onewildandpreciouslife. I’m in a state of shock. Disbelief one minute and the next trying to sort out my life admin. I don’t live in the UK and so this is all so new to me. Unfortunately I do Dr Google. It’s in my nature but I’ve always been someone who wants to know all about everything, medical or not.

I’ll take a look at the MacMillan website, thank you.

I hope you’re treatment is going well. Thank you for your support.

[SewingBees]

I braved the bald look today. My hair has grown back a bit but still very very short. Felt very strange (and cold) to be out without some sort of hat or headscarf on. But also very liberating!