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

@Lndnmummy of course you're all over the place, it is so much to take in when you're mind is racing and you're so anxious. In my experience of now over two years of all of this, is that often they just need more information and also often doctors need to discuss things with each other. When you're there, it all feels so garbled and you can't think straight. The waiting and the worrying truly is the worst part, once you know what you're dealing with, you will feel better, I didn't believe it myself. I would shelve any plans regarding work until you have firm information.

Yes, this really is a lovely thread, full of the most kind and supportive ladies, quite an aberration from typical MN I have to say.

@Silkierabbit that sounds so tough, I'm hoping Social Services will be able to help you Xx

Just typed a long post and lost it!
Fantasea your last two posts are exactly what I would have written and about treatment, feelings, friends etc. This is a very lonely road we are on and people dont understand it and usually dont know what to say.
Ive just had a couple of days away with dog on a farm in a 1900s showmans caravan (think sort of old railway carriage) its been blissful and I have not thought about OC , now Im back all the thoughts are crowding in again, and Ive just got a scan appointment. Until thats over and I hopefully get a good result Im back on the worry train.

Im on 100mg Niraparib and dont really have confidence that it will be effective as 200mg seems to be the preferred dose. I long for the old days when my worst worry was paying my household bills !

And with all the above going on, how come Im still terrified of the dentist |!

Well, just had the news my Dad will need to go into a nursing home from the hospital, as he just wouldn’t manage at home even with support. His wife is great but he needs specialist medical care and physical lifting etc which she just can’t do. Poor man, really not how he wanted to see out his days. I am scared to ask what else can go wrong this year. It is now a year since my DH went into the hospital. He was there for 9 long weeks and we never acknowledged to each other that he was dying. I really felt it had to come from him, and it never did.
I had my last filling at the dentist so am good to go with the Zoledronic acid, and started my hormone blocker (10 bloody years) yesterday. Next op next week.
Then radiotherapy. It’s never ending. It feels relentless, but I am grateful the treatment is available to me, just don’t feel it all the time.
In fact I feel really pissed off…

I know I am having an easier journey than a lot of you on this thread, and my thoughts are with you all. How the Hell are we all keeping going? We must be amazing.

PS open the picture, it’s the words that make it funny!

@Podgedodge that pic definitely looks like how I feel!

A relatively minor moan from me today in comparison to what some of you are going through but I found out from seeing a different physio that I actually have two frozen shoulders rather than the one rotator cuff injury that the previous physio had been treating me for ineffectively since last Sept! I don't know if anything would have been different but perhaps I could have had less pain & discomfort and would be in a better position going towards my reconstruction surgery in the next couple of months. Still at least I know now & am on the right path to getting it sorted. I knew frozen shoulder was a risk after breast surgery but thought it was only due to the mechanics of it but it can also just come on as a response to trauma & stress apparently, as if one needs that as well after any stressful experience.

@Podgedodge You’ve been looking through my window! That is exactly what I look like right now.
We walked the dogs and they insisted on going to the pub for a packet of crisps this evening so we had to have a pint.
We got home in time for our Chinese delivery and have watched the last episode of Moon Knight in our PJ’s stuffing our faces.

Oh @Podgedodge i am so sorry about your dad. Yes not being able to live out your days in the way you want is very scary, and scares me. And your husband. Very sorry for your loss. Similar thing happened to someone I know. Her husband was HIV positive, no one knew (apart from her) and then he got lung cancer and died relatively quickly in hospital. He never acknowledged it either and wouldn’t make a will. It caused so many issues for her as practically and emotionally. I’m sorry you went through that.

I shall have no such issues with my partner however he started talking about my death from the minute of my diagnosis er thanks mate. And in the car on the way back from hospital today he started moaning about being alive, frankly. Saying stuff like well that’s another day in this earth in a very pissed off manner and saying 365 days a year fucking hell and then trying to calculate how long we’d been alive for in days and I was like I do not want to hear this frankly! Despite how shit everything is I am grateful to be alive every day (mostly) because I know I do not have an undefined number of decades left like most people in their mid 40s. Well I just turned 47. I don’t even want to think about it but am constantly making bargains in my head about how long I’ll live and how old DD will be. Had a lovely friend with cancer who managed 4 years for example against expectations so I’m like well if I can do that DD will be nearly 8 and she’ll understand more and I can say goodbye properly. Horrible dark stuff & your mind just goes there sometimes.

I do love that meme. I might just start sending that to the people who insist I am going to get through it etc. And the one friend who just doesn’t get it and keeps saying “when you’re better …”

Finally had a second chemo today. It was hot sweaty uncomfortable went on forever I have never been so desperate to escape … don’t think the mix of piriton and steroids is working for me frankly. They put the steroids in too fast in my picc line too and it caused my whole crotch and arse to feel like it was on fire! I did not know that was A Thing. But I mentioned it to the nurse in horror and she said oh dear yes that’s a thing tell them and next time we’ll put it in more slowly … 😐came home took a bunch of downers because the steroids make me feel like I can’t settle, ate a huge amount of food and fell asleep on and off between 7pm and 3am when BING here I am quite awake listening to the whole house (well my sister, good god she is loud) snoring …

thinking of everyone and especially @Silkierabbit i am sorry it is so hard to get support for your son. I hope SS can come up with something.

Jaysus sorry for the huge walk of text! I do believe the steroids don’t suit me 🤔

Wall. It was a wall. Right off to try and find my sleep … now where did I put it….

Oh @mowly77 I can not believe what an utter arsehole your DP is! I have no words. I saw a comment that you made on another thread and until then hadn't realised how awful your situation is. My best friend died from cancer about 15 years ago and she was in an abusive relationship with two kids under 10 but I never knew that hers was abusive marriage. At the time it didn't make sense to me when she made certain arrangements or did certain things but after she'd gone it dawned on me why. The last time I saw her (a week before she died) she made me promise that I would not help her husband in any way and that I would turn my back and never see her kids or husband ever again after her funeral. She must have made all of us promise the same because six months after her death, the husband wrote me a 'woe is me' letter saying that the courts had returned the eldest child to his father and that none of his wife's friends would speak to him. I found out after a bit of digging that the youngest child had also been taken from him and guardianship given to the maternal grandparents. My friend spent her last few months laying all the foundations for that but in your situation mowly are you able to look at guardianship for your DC?
At least my DP has stepped up and is now doing everything he can to make my life easier. We were on the verge of splitting at Christmas due to his appalling attitude but this has been a wake up call for him and it has refocused his attention on what is important to him which is me and our family.

In other news, I got my P line fixed after spending Thursday morning in hospital and it's now all okay. On the not so good news front the pharmacy got my Limbo cover in (hurray! Hello shower!) but when DP went to collect it this morning someone at the pharmacy has given it to someone else in error. I can't even use cling film (as helpfully suggested by several of you) because we use PVC free stuff and it will not cling to itself! Sadly clingfilm, like foil, is currently awol from the supermarket shelves here and there is none to be had....anywhere!

Big hugs @mowly77 I saw that thread too.

@mowly77 I've read your other thread too, sending love Xxx

@mowly77 I am so sorry to hear about the hard time you are having. 💐

Thanks everyone, thanks @MothralovesGojira I am very glad your DP has stepped up now, and so sorry about your friend & her situation, that must have been very hard.

I actually feel weirdly ok, think I'm able to block out DP at this point to focus on DD. We've actually had an honest talk or two today about how he feels and I'm a bit 'meh' because DD is my focus but I also understand his pain. It's just different to mine & to get through this & do all I can for DD I feel I have to shut it out. Rightly or wrongly. Me & my sister have decided to go see a family lawyer & see what can be drawn up on paper anyway for DD's future. DP admitted today he won't be able to cope if, or honestly when, I'm not here so that's a breakthrough really.

It's not just him, I don't know if anyone else finds this but many friends also have been useless or I'm stumped what to say to them & I'm increasingly turning inward. Communicate only with 2 or 3 close friends who actually get it for different reasons & only want my family around.

Also is having cancer a bit like being a celebrity in all the wrong ways?? I feel like so many people want a piece of me ... what do you want me to say?? Yes I have cancer and it's very very shit? I'm being ungenerous I admit because people clearly want to help. Totally outing (but I don't much care anymore) but it's partly my own doing because I wrote an article for a national about my terrible treatment in A&E & I knew it would alert a load of people to my, ahem, condition. Yeah sure enough ... I had some doozys! One from 30 years back. I did have the good sense to block an ex and his current girlfriend though before they could get their sentiments in. There are some people you just never want to hear from again.

DP taking me to Marsden tomorrow – as long as I don't sicken overnight & get rushed to A&E as has happened the last TWO times I have had appointment there goddamnit. Been a ballache talking about it endlessly as he's missing something important to him to do it, & I don't want an hours-long rush-hour trip to central London & back full of resentment. But hopefully will be ok.

Wow I am sorry I clearly find it impossible to write short posts. I hope everyone's weekends have not been too bad & am wishing you all strength & courage for whatever this week brings.

Wed had bone scan, quick only a few minutes and open and not too bad though had to go alone as no parking again and was so anxious before. Thursday was bloods for chemo and oncologist. She wants to do 8 more chemos weekly and to try first this Monday with cannula again then if difficult go to picc. She said can do blood clot tablets rather than blood clot injections if get blood clot and says about 10% go on those.

Beyond depressing what is happening for poor DS with schools and SN and got very depressed last week. DD getting ready for GCSEs and said that if Mr Floof arrives Thurs night rather than Sat she will do so much better so that has been brought forward.

Hope Marsden goes well Mowly and good for you getting publicity about how bad A&E is at the moment. It scares me so much when you see seriously ill chemo patients being wheeled in and there is nowhere in the hospital for them to go.

Sorry things are difficult Podge

Thanks Fanta and Ldn

Love to everyone else.
.

Hi everyone, just checking in to see how everyone is?

It all sounds really stressful @Silkierabbit, glad Mr Floof’s arrival has been brought forward, I really hope this helps.

Feeling really achey and tired today, all
the LTF’s I’ve done are clear though so think I’m either exhausted or have caught one of the many colds that seem to be doing the rounds. Either way I’m feeling very under the weather so heading off to bed shortly…just hoping I keep as healthy as possible for the next 2 weeks… surgery is two weeks today 🤞🏼

Sending everyone love as usual xx

My dad is also arriving Thursday @Silkierabbit but I think I’m now more excited for the arrival of Mr Floof! Has there been progress on a middle name??

sorry you’re feeling rubbish @TwoBigNoisyBoys there’s a load of cold doing the rounds here too.

Marsden was great. They feel local hospital is on right track but they were so much more organised & competent. I had forgotten what proper medical care looks like. Flurry of referrals for things missed such as MRI and tumour markers (although if local didn’t take them before chemo it’s fucking pointless as have no baseline, & I suspect they didn’t as fairly useless) & I can see them again when / if I can get through 12 chemos.

& DP and I actually had a nice time. Went for a Thai curry afterwards. Enjoyed driving around London again. Wonders will never cease.

love to everyone.

Hope you feel better soon TwoNoisy

Glad Marsden went well Mowly and you had a nice Thai meal.

Well after saying before they would never be able to use my veins again I did what oncologist suggested and drank loads before and did not use icey things until cannula in and same nurse said cannula was super easy on me, it was like that sessions 1 to 3 and that was session 5. Session 4 not drank before as rushed that day. So think six will also be via cannula. I was quite anxious, maybe the gap but the male nurse held my hand and felt ok after a few minutes. Then DH was an hour late and felt rubbish. And having fun and games with ESA again, they sent form to wrong address 3 weeks ago and has to be returned by 4 weeks and requires GP or hospital to fill in. I have pre-prepared an ESA 50 but they have sent ESA50A though appears just a shorter 20 page version. Issue is getting someone to fill in GP or hospital bit, GP has ignored though maybe attachments go to spam and hospital said no today, I did plead with them and they took it and said will do it some other time and post back. I may just send off as is as have letters saying chemo etc, depends how fussy dwp will be.

Really looking forward to Mr Floof. Shattered after chemo but quite busy week, got final, useless EHCP today but have got transport if fill in form so have done that, then tomorrow is IPSEA, school place at meeting and children's services and put rubbish for special collection. Wed is plumber new bathroom sink, counselling assessment, and visit another school. Macmillan counsellor continuing for free on Thursday very kind and also have complaints meeting and meeting with Head of current school, just hope I can stay awake for these. But as I came back from hospital I noticed rubbish sacks have appeared in the garden, hmm DH.

Though should point out DH had cleaned some dining room carpet and kitchen looked better and he went through 3 sacks of clothes with me to sort them and could get rid of 2 so making progress.

DD went with Noodle for the middle name though not sure if he is Mr Noodle Floof or Professor Noodle Floof. I got a handpainted bowl with Mr Floof on and a picture of him.

Woke up at insomnia o'clock this morning and checked the Daily Fail in a general haze, only to see Bowel Babe is moving to hospice care. While its not my cancer, reading about her trials to say alive over the last two years have been inspiring and relatable. Doesn't hurt that her family is photogenic and seem rather posh too! But she's fought long and hard and I cant imagine that decision was easy for her.

@mowly77 glad the Marsden could give you some reassurance/clarity and treatment direction. I did read your article in the national paper a few weeks ago and thank you for putting yourself and your experience out there. BTW, next time you are at the Marsden, there is a rather nice Vietnamese called Go on the Brompton Road. I keep meaning to try it and it always smells amazing and fresh when I walk past - has good reviews.

Looking forward to Mr Floof as well - my aunt and uncle have a Maine coon and he regularly takes care of the bat problem in their attic and kindly presents the fruits of his labours on their bed.

@Silkierabbit You can print off the ESA50 from the website and complete it before sending it off. You can just complete the cancer page and ask the chemo nurses to sign the last page. You will get the support group with having cancer treatment and you don’t get anything extra for completing reams of pages.
I hope the arrival of Mr Floof really helps your household, I remember the joy we got from Miss Mabel as a puppy.

@TwoBigNoisyBoys I have that feeling too but it’s a combination of radiotherapy fatigue and the cough I’ve developed.

@mowly77 Glad the appointment at Marsden helped, if the staff are organised and efficient then it gives you so much more confidence.

I am going to see my gynae onc today, things aren’t right and I have a sore that won’t clear up. My appointment is at 10:50 and I have a teams meeting at 11 for work so will dial in from the car after I have seen her.
Between the coughing (especially as my pelvic floor was ruined by radiotherapy) and the sore vulva I am feeling quite sorry for myself.

Braved the shave last night.
Was tired of looking at my sad little wisps.
my DDs did it for me, and were both great. It does look better, definitely less pathetic.

Ah braving the shave @podge I’m wondering when I’ll be doing that. Glad it is wispy no more! A woman came into chemo with a very chic very short haircut last week as an obvious interim measure & I was half tempted to go that way but also too practical (and broke) to spend ££££ on a haircut when it’s about to fall out … I’ve got an array of scarves and head coverings ready to break out.

Professor Noodle Floof certainly has a dignified ring to it @Silkierabbit (sorry about the school issues … and the rubbish in the garden again!!!)

a sore vulva is no joke @MrsPnut

@HerbalRefreshment love a restaurant recommendation thank you - I’ll be doing that one next time fingers crossed sounds great. I was starving so the Thai hit the spot but it was only an average Thai when all is said and done from the little pub across the street from hospital entrance as had been looong wait to be seen & could not be arsed to go too far.

Im going to have a pity party so just warning you !
Suddenly I have gone back into the deepest of doldrums after a few lovely days forgetting about OC. I think its possibly scan anxiety, but the thing that is upsetting me the most is that I have no family at all, and when I finally kark it there is no one to remember me. I will cease to exist not even remaining in memories. This whole "journey" has been taken alone, all appointments and treatment ( I know COVID has meant this for most).It really brings things home when I see families together, and weirdly watching Antiques Roadshow where people are proud of their ancestors.
God,orry for depressing you all, but dont have anyone I can whinge to, my two old friends have their own health problems so I dont tend to let them know my feelings.
Off to make like a pair of curtains and pull myself together