Cancer Support Thread 84 - gently crunching our way into autumn

[mowly77]

New thread as old one about to be full. As those who have been around far longer than me have said: Welcome. Pull up a chair, help yourself to a biscuit, a large gin, or a detox tea. Or all three. This is a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc., vent, scream, or discuss life in general.

Please feel free to join for support if you are going through tests as well, hopefully they will come back all clear, but if not we are here to hold your hand through the journey.

Got a call from the hospital today, first appointment in Radiology is next week. I’m having SABR so I’m assuming that Monday will be fitting me with a cast and tattooing the marks on.
Nervous now, it’s not seemed real until today.

@EachandEveryone that is such a silly thing for them to say? Why did they think that? I have personally been very open since I was diagnosed (with friends family and work anyway) and have received so much support and help that I wouldn’t have got if I didn’t tell people. I’m a big advocate for seeking support when you need it, if there’s one thing in this that is positive it is the new, closer relationships you develop with certain people.

I’ve only ever had a fluid biopsy into my side but I would probably say you won’t want to return to a nursing role the next day.

My DD came home from her Dad’s yesterday. She was very perceptive and knew something was amiss from before she left. We spoke and I explained what was going on and although teary she was relieved as I think she had been imagining all sorts. My operation is next Tuesday - the upside of keeping myself distracted is that the house is getting the mother of all spring cleans / Reno projects previously ignored getting finished, old clothes sorted and will be uploaded on vinted later, kitchen fitter coming tomorrow to finish off the units, oven and carpet cleaner came yesterday, finished painting my daughters room yesterday…!

@mowly77 @HardyHarvey @TopOfTheCliff @dotty2 @SierraSapphire @AGreatUsername - Thank you for taking the time to respond to my post. Im in a much better place than I was last week, having it out there and dates / treatment plan in place has really helped, as have your words. This is a really lovely group that we would all rather not be in of course, but im so thankful its here and I’ve been catching up on all your journeys through the thread every day. ❤️

I suspect Im having a recurrence. Ct scan in 3 weeks and then a 2 week wait for results. Not a happy bunny

@thereisonlyoneofme oh no! I hope it’s not that. Sending you positive vibes for the inevitable dreadful waiting period.

Really hope it's not that @thereisonlyoneofme - why so long to the CT scan? I thought there were tighter targets in relation to treating recurrences.

@Vinorosso74 sorry to hear you have succumbed. I am still living the hermit life so am one of the few round here who hasn’t had Covid. It’s rife at the moment. Waiting to see if DM88 has caught it off my DSis 😳

@fudgecat they give you a choice. You can put numbing cream on it 30 minutes before you go in. I tried without after a bossy nurse told me there are no nerve endings under the port but there are ! and if it hurts I get all paranoid I’m going to have an extravasation like our friend MrsP .

@thereisonlyoneofme hold steady! When you joined this thread you were planning your funeral and look how far you have come since! New car, lovely cruise, and a new friend. Could you get some Macmillan support on the phone while you wait for the scans? It’s so horrible and I know you live on your own. Could your specialist cancer nurse speed things up a bit? Sending hugs x

I was talking to the head of oncology on the 5k your way Parkrun and we had a really interesting conversation about cancer and what we have to die of one day. I just read Peter Marsh’s new book and he writes about advanced prostate cancer in a very interesting way. None of us want to think of what happens if we don’t get a cure until it happens. I’ve been so convinced I can beat off this second cancer but what if it’s a secondary in disguise? I’m having a wobble this week as I really hate being the Brave Inspirational Friend Fighting Cancer and just want to be me. Annoyingly chatty very energetic slightly bonkers Top.
If I get MBC then I am stuck for the rest of my life as the BIFFC.
I decided to send a shirty message to our local cancer support centre that has been closed for two years and still doesn’t do any drop in sessions. I’m angry with them for some reason, probably displaced from my own issues! It’s probably good they only do appointments with Covid around, but I would like to be able to talk to other people going through this shit which is why I am on here wittering.

Sending best wishes to all. Hope treatments are going well and results coming quickly.
Top x

Ahh the BIFFC … yes it is awful Top I would very much like to be the UFDAFAFOAR (Uninspiring friend doing absolutely fuck all fighting or anything really). But it’s too late for me … save yourself. I am also the CMATSGQLADMEC (cancer mum at the school gates quick look away don’t make eye contact) & I really can’t recommend that … although I have a handy excuse not to get embroiled in the school fete etc.

@EachandEveryone I just realised that after your flatmate said he doesn’t want to hear about your health now your mum and sister have blocked it as well. You need to sit them down and tell them firmly that if they love you and want to help then they need to accept that denial is not going to be a good approach to take. They may need to speak to Macmillan themselves or just need time to take it on board but for heavens sake what do they think you are going to do? Wish it away? I wish we could.

@mowly77 @TopOfTheCliff BIFFC 😂that's really made me chuckle. No thanks. Being inspirational just cos you just keep on keeping on. Gets rolled out for lots of stuff when most people wld also just crack on.

i'm in hospital atm being well looked after after getting surgery really quickly to stabilise my back where a tumor was messing with it. It's a relief to get this but sorted at least so I can be comfortable in between uncomfortable treatments and actually feel up to doing stuff and being an inspiration by going to the Co op.

Think I might think of alternative personas to adopt as it feels like 3pm here already! Slow day.

Spoilt Cancer Patient Who Demands Own Way In Everything All The Time Because Of Having Cancer?

I'm happy that my sister in law used me being poorly to finally relieve herself of all the PTA stuff she ended up with. 🤣

@incognitodorrito we have also sprung into action re house bits. Funny as was just wondering if I was being bit odd with my reaction atm. I dk how else to process really though. Plus am dosed on morphine. This thread is just such a tonic.

I phoned Macmillan recebtly and thought it was an amazing support.

It's only been a week since I was diagnosed initially. So strange.

Lots of luck to those waiting on results and keeping all things crossed.

xxxx

@mowly77 I'm the "Cancer Mum" at my youngest's school too, & I'm mates with the "Young Widow Mum"!

@thereisonlyoneofme Possibly your scan might come through earlier? Is it worth attempting a call to get yourself on a cancellations list? Probably not & you shouldn't have to but you never know.

oh @EachandEveryone that’s no good. People’s reactions to your own diagnosis can be frustratingly … awful. It shouldn’t be your job to manage deeply unhelpful and hurtful attitudes, but it turns out it’s yet another thing on the cancer admin list.

In my experience denial is very common. Every time I’m honest with my (lovely) stepmother, for example, about how I really am she ignores it or changes the subject & refuses to engage. I might say ‘I’m terrified about dying & leaving my daughter without a mother at such a young age …’ and she will say ‘ well I’m praying that won’t happen!’ and then moves on … Well good for you and your magical sky being but uh yes this absolutely WILL happen. So I’ve largely given up. It’s very invalidating. But it’s also clearly a defence mechanism and way of coping, so I get it even if I don’t ageee with it.

I’m really close to my family but they all live abroad & this is upsetting, obviously! They’ve been really amazing practically, have been over absolutely loads to help look after DD I’m so grateful for that. But this denial is on a whole different level. My DSM is very non confrontational in general so I’m just putting it all in the ‘shit things I have to accept’ bucket & seeking support elsewhere.

Is there anyone else you can confide in, Each? Any other trusted friends or anyone you know who’s been through similar? Sometimes support comes from unlikely places.

@thereisonlyoneofme I'm really sorry to read your update, why so long for the CT scan? Is this the one without contrast that you're waiting for? Your file must have been marked as urgent so you might be able to push up the list if they have a cancellation, I do hope so Xxx.

@EachandEveryone I do feel for you with the lack of support from your flatmate and now your mum and sister. I can relate to the family lack of support and it is really painful when those closest just dismiss it and refuse to engage. My relationship with my mother is 'strained' to put it mildly, not helped by my inconvenient cancer diagnosis which is still ongoing. I'm ashamed and embarrassed to admit that she treats me as though I'm milking a bad cold and our relationship has deteriorated further for it. I feel so upset and let down, I've tried explaining how I feel and how I need her support, also pointing out that she is fortunate to get to her late 80s without any significant health issues, but nothing has changed. Unlike me, she is fighting (literally) fit. Have you tried ringing the Macmillan support line? Some of the counsellors are great, others less so but it's someone to listen who won't rush you away. Thinking of you Xxx.

Fantasea I have another one booked but its not till 23rd, then approx 2 weeks for results. I was hoping that it would be reported by 28th when I have a consultants appointment, but that seems unlikely!

Topofthecliff I have dusted off the funeral plans ! My mind has gone down a rabbit hole at the moment. Keeping fingers crossed and toes

I am both the CPRTWWMNBF ( cancer person returned to work who must now be fine) also the WPWMNBF ( wjidowed person who must now be fine).
Basically what it means is no-one ever talks to me about anything! Sometimes that can be a good thing, but sometimes I would just like to shout,’do you know what I’ve been through? Why don’t any of you ever acknowledge it?’ Which I know is totally unreasonable. So maybe I really am just TUP (totally unreasonable person.❤️

At least being self-employed and working with lots of different people I've been able to keep it hidden from most people - I told the minimum number of people I was having a hysterectomy but mostly not what for other than a couple of clients I'd call friends, and now I'm working through chemo. I kept it quiet, mostly because I was worried about not getting work in the future, but then there was a woman I was chatting to who said she'd been very open about her diagnosis and it meant once she was recovered and back at work and wanted to put it all behind her there were still lots of people asking her questions about it. In reality, I'm not sure who knows, and who doesn't, I haven't been private about it in the rest of my life, but whilst they think that I don't know that they know they're not asking me questions, so that's fine!

Hi everyone. Sending love to you all. I have now mostly finished after 2 surgeries, chemo, radio and now 10 years hormone therapy and reconstruction surgery to go but that has a 28 month wait from radio. Now on holiday in Maldives been swimming and saw dolphins today. Life would be getting back on track only poor ds was sectioned for months, only 15 and mute not happy about it. Seems all my luck came in my first 45 or so years. Dd doing brilliantly.

Hi Silkie! Sorry to hear about your son ... but glad you are having what sounds like an amazing time in the Maldives.

In the spirit of good news, and because all I do on this thread is complain, I would like to note that I rocked up at the hospital pharmacy today to (finally) collect the new dose of my pills at the appointed time and ... they handed them to me. No 7 hour wait, or news that they've been sent to a pharmacy 3,000 miles away ... just ... the pills. I was pleasantly surprised.

@mowly77 wow! You must have felt like a lottery winner 😂
@Silkierabbit nice to hear that you are reaching the end of the treatment and are enjoying your holiday, hope things with your son improve

Thanks Mowly and Fudge Glad you got your pills Mowly. Our GP gives them in 28 day batches which is quite annoying as have 10 years of the things. It’s apparently to save the nhs money but no idea how that works. I turned down the 2 year extra pills in the end.

Yes lovely holiday and amazing day saw dolphins on boat then beach and tropical fish in sea and swimming and meal at the steakhouse.

Ooh @Silkierabbit that is so fabulous! I am enjoying your trip vicariously. I am dreaming of a lovely relaxing stay by the sea next spring with blossom and coffee and books to read and convalescence like a Victorian lady. I might take my sweet niece and we can have a Merchant Ivory style trip with her as my companion.
Sorry to hear about DS. Was he admitted as an inpatient? It must all have been very harrowing for you.
I am discovering the Paclitaxel Acute Pain Syndrome today. One for the Low Odds Bin Club members perhaps. It’s like being stabbed with tiny daggers in my ankles knees and wrists. Hopefully it will only last a day or two. Why did I believe my lovely oncologist that it would be easy? I should know better by now. I am however sitting by a log fire with tea and crumpets doing a crossword and listening to the radio. It’s not so bad.
@mowly77 congratulations on a small win.

Gabapentin for those pains,@TopOfTheCliff , all the way!

Sorry you have pains on the Pax Top. My oncologist said Pax wasn’t easier than the other chemos it just spreads the feeling rubbish out more evenly. I used to take a cool box with me to mine with ice gloves socks my frozen peas for my hair and lots of ice lollies. I think the ice lollies were the most successful part. I think it was worth doing gloves and socks but still got bad neuropathy though now 4 months on it’s only the one arm I have numbness in and no pain so even if you get it badly as long as tell team so they can adjust dose if needed it does improve or often go with time. I hope you get to go on your holiday. I dreamt of holidays all the way through.

yes ds is an inpatient since mid September and taken in horrifically for a mute scared suspected asd child handcuffed held down by 4 security guards and force sedated for hiding at school. Then given 28 day section for non cooperation now a 6 month one for non cooperation saying they are keeping him until he is not mute and cooperates. Though they originally said that would be a week and now 6 weeks later they have given up he just flushes his care plan down toilet refuses all meds and won’t or can’t communicate with anyone. They will have him for life with those targets. He is at a nicer place now where they don’t force things at least but in Catatonia from the police taking him in unable to move or speak a bit like in a coma from fear. Very distressing for us and esp him and no viable plan atm. Though now their plan has failed they are asking me what to do whereas before it was all listen to professionals you have no say. And there is lots of pass the problem between agencies been like that for 4 years. Now it’s multi agency and they have to do it in front of each other. Soon as money is required problems start and teams disappear. Nothing changes. Only good thing is we got to go on holiday as no chance of him home any time soon.