Cancer Support thread 86 - Stay Positive

[LemonDrizzle10]

New thread as other one nearly full.

Thanks for the advice re-hair folks, hope you have a lovely time in France @TopOfTheCliff

@EachandEveryone I've been told "cure" for mine but I am stage 2 with no lymph involvement afatk. It must feel a bit shit to be told more chemo when you thought that was your last one. I know it's great we have chemo treatment but I'm sure the end point ("finished treatment and can return to normal" is the holy grail (if its within reach, I'm aware its not for some, my poor DDad only got about a year after his cancer diagnosis and was told not curable from the beginning ).

Also smiling at the sentimental nodes
Hope you got on ok @FangedFrisbee

I treated myself to some soft light beanies from Amazon, one of them has an african style vibe and my son made me laugh by wearing it, lowering his joggers like the gansta boys and doing some "wagwan?" talk (he loves Top Boy (as do I, if you haven't watched, its very good).

@ajandjjmum not sure if this is even remotely useful (or relevant for that matter) but 3 years ago one of my cats had a nasty accident. He needed one back leg amputated and the other back leg was horribly wounded. He spent 3 months at the Supervet (thank you pet insurance) whilst they tried to get it to heal to no avail. The final thing they used was a vacuum dressing which did the trick! He's been hopping around very happily ever since...here's hoping you have just as much success as Hubble (below).

Photo missing for some reason...here he is!

@EachandEveryone I took early retirement from the NHS (25+ years of nursing) I thought it would be a battle. In reality it was very easy there are forms online to be filled in.My oncologist gave the medical evidence ,you can choose to see this I decided it wouldn't add anything positive to my life so choose not to.
Obviously if retirement is a decision that has to be right for you but don't be out off it because you think it might be complcated.
I love retirement I wish I'd done it years ago!!

Hi. I'm due to have 2 lots of paclitaxel and carboplatin 3 weeks apart for cancer in lymph node groin. Looking for real life stories of side effects although I appreciate everyone's different. Do people feel ill all the time after their first infusion or is it a week of feeling awful then ok till the next one? How long free the 2nd infusion does it take for people to feel properly well gain? Did everyone lie their hair? Tia x

Hi @Timeforchangeithink I had 4 rounds of paclitaxel/carbo albeit weekly. I lost most of my hair after the second treatment although some wispy bits are clinging on. Still got my eyelashes, eyebrows are thinning but still there.
On actual chemo day you will probably feel very tired in the evening but may have a burst of energy next day - that’s the pre-med antihistamines and steroids. After that it’s fairly unpredictable. I haven’t had too much sickness and diarrhoea but have had terrible anaemia, my toenails have all fallen out and my fingernails are heading that way (I think it’s relatively rare for it to be this extreme - you might be ok if you follow the nail care tips eg on MacMillan).
other than that, sore mouth and a soapy taste in my mouth so lots of things taste a bit weird. Ice cream has become a major food group.

Everyone is different though. This thread has been a great source of advice so keep coming back and asking if you’re experiencing weird stuff, someone usually has a tip.

I also am being treated for similar but my chemo is once a week for three weeks then a week off. I have been fine so far but I have another three months and Im expecting it to get more difficult. Have you met your nurses yet? They usually give good advice.

im fine the day of infact I quite enjoy laying there getting served tea and sandwiches for a few hours. The evening though is vile in that I cannot sleep. I would get zopiclone from your gp on preparation. The following days Im fine bit about day four I get the runs and day six my mouth feels sore. as the weeks pass i start to get tingles and backache.

Oh god dont be like me get some healthy snacks in. Ive piled weight on I can eat half a loaf of bread in one day. Im determined to go to Waitrose before I restart with a proper shopping list so I can plan for those 2am snacks. Get sone ice lollies in they really help with the mouth. I started to lose my hair after three weeks. I cut it short then shaved it and it was a massive relief.

Anything else you need to know about come back on here. I much prefer it to meeting people face to face😃

Hi @Timeforchangeithink I didn’t have carboplatin but I did have 4x paclitaxel on a fortnightly basis. It was the one that made me lose my hair, eyelashes and eyebrows. I had kept it all on EC. My index fingernails have gone v weird but it’s been 6 weeks since my last chemo and while they’ve lifted I don’t think they’ll fall out. Other than that I think the worst I felt on paclitaxel was the bone/joint pain 48 hours-ish in. Once that went I felt relatively normal, physically. It was the emotional effects that did me in. Good luck x

@Timeforchangeithink I had three-weekly carboplatin and paclitaxel and I cold capped and kept enough of my hair to not look like a cancer patient under a hat and to feel normal-ish walking around the house, though it did thin quite a bit. They didn’t offer me cold capping, in fact they said I was the first person on this treatment to have it, but they were fine about giving it to me when I asked. Stats show that 34% of people keep 50% of their hair on it.

@EachandEveryone @WorryMcGee @SierraSapphire thank you all, really appreciate your answers. Been through radiotherapy and cancer tablets before but very different side effects. Hopefully I'll have a date for starting next week x

OMG sorry no idea where that gif came from!!!

😂 that made me laugh!

I'm ok, it was a lot more painful than I expected. I'm exhausted, I had to stay in hospital last night so I didn't sleep well!

I've got a lot of stitches but just had some OxyContin so that should help.

Peace out

@Atreus are you another member of the Maine Coon club here in the thread? That’s 3 of us if so! Your cat is gorgeous.

@FangedFrisbee I am glad you’re ok. Sorry it’s more painful than you thought.

@EachandEveryone I have also had the “treatable not curable” line given by a nurse, but the dr says the aim was cure so sometime I wonder whether to take it all with a pinch of salt!

CT results for me today. At 3pm so all day to wait. Plus I think the junior doctors are striking today so am worried that’ll mean being hours and hours late too.

Fingers crossed @AGreatUsername - are they still doing your CA125? I haven’t had any follow up in 5.5 months since chemo ended but sometime I spoke to last week was horrified that they don’t check my CA125. I’ve got an appointment next week but I’m not really sure what they’ll do. I’ve got another blood test too at the GP as I’ve had some weird results that could be related to infection but could be something worse. It’s horrible.

@SierraSapphire yes they are. I have “forgotten” to get it done in time for this one as it has remained stubbornly high (620 last time, 4 weeks after chemo ended) and I didn’t want to know the results of that today. I will have bloods taken at the centre safe in the knowledge the results won’t be back until tomorrow. I think they should be checking you more thoroughly too, CA125 maybe not so much but general bloods and 3 monthly scans for sure.

@AGreatUsername thinking of you for your results this afternoon and hoping you don't have to wait too long.

Had my second macmillan counselling just now and I’m not going to have any more. Stupid suggestions like “make sure you go for a walk” (I have two dogs, I’m always out on a bloody walk) were winding me up anyway and then today I mentioned that I’m upset about hormone therapy and haven’t taken any yet because I’m scared and angry about it - and she starts banging on about how HRT has changed the lives of loads of women she knows and how they all feel great! I said HRT is the opposite of what I’m having to do and also I won’t ever be able to have HRT so thanks for reminding me that life is better with all your oestrogen. I told her it wasn’t working for me and I don’t want any more sessions then hung up.

@AGreatUsername Yeah I feel like I didn’t should ask for a CA125 test, but it’s too scary! I know that’s not the most sensible approach. I do think maybe people would be more proactive about tests if there was a bit more emotional support there.

@WorryMcGee that sounds really bad, and not actually counselling anyway. It’s so frustrating that there is so little support and what there is doesn’t actually meet our needs anyway. I had a session with someone at a cancer charity, not counselling, more practical, but she told me all about how she was sexually abused as a child, massive overstepping of boundaries, and she also said “we are only given as much as we can handle”, I had a robust exchange of views with her about that!

Worry You can ask for a different counsellor, the first one I had at both IAPT and Macmillan I had one session of and found them both lacking in understanding, one kept trying to argue with me when I said I didn't want CBT as would be too stressful with cancer and the other just treated cancer like it was nothing. But both times I changed and got really excellent counsellors, mine I just told about my week and they went that's awful and offered sympathy. But that worked for me, someone to listen to my whining. I've had similar re HRT from one too who was telling me I had no choice but to do a treatment when I was terrified and it was unhelpful, whereas a try it once and see how it goes approach might have worked. I also found going through cancer treatment it was best to buddy up with people of similar outlook to yourself so for me that's worriers and whiners. 😂Not like go for a walk and think positive people. But there's no right and wrong just whatever helps you and if something isn't helping then would ditch it.

That’s really poor, @WorryMcGee . If you can bear it, you could complain to Macmillan. They shouldn’t really let people like her lose on cancer patients. My Macmillan counsellor was fine, not amazing but fine.

I get the anger about the HRT thing. Me too. I’m older than you and surrounded by women my age waxing lyrical about it. I was also angry and scared about the hormone treatment. FWIW, I started on zoladex plus letrozole 2 weeks ago. I’ve had a few hot flushes but no other noticeable side effects so far. Except possibly that I’m even grumpier than usual.

Thanks Dotty, Silkie and Sierra. I’ve just called macmillan because when I think about it, it seems mad that someone supposed to be providing cancer support seemingly has no awareness of one of the main treatments for female cancers. They agreed and apologised and said they’ll find me someone else but I don’t know if I even want to now. DH says give it a go as they can’t be worse than this one was. She also said the classic “your hair will grow back” even though I told her I get upset when people say that as if it’s a guaranteed overnight thing so why I even agreed to a second session I don’t know.

Sorry @WorryMcGee that you got such an insensitive clot for a counsellor. It sounds like a recording of your conversation could be used as a “How not to do cancer counselling” teaching aid!
@Silkierabbit I think you are onto something. It sounds like a Monty Python sketch. You could divide cancer patients into different types. Pessimists this way, Optimists that way. Worriers and Doommongers over here, Deniers and Insanely positive people over there. I am a denier and an optimist but I find the insanely positive very irksome when they ignore the statistics. I just choose to be in the good outcome group until I am not!
Just been listening to radio 4 and it seems Clutter is now becoming fashionable as long as it is curated. Hooray!