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

hi @balkanscot that sounds really really shit and scary and I am very sorry. Hope you will get more info soon and he will be home with ore of a plan if it is as feared.

@Silkierabbit Putting things in our (tiny) garden is DP's favourite too. I made him take the bastarding things out so I can enjoy my own garden although it needs some er... gardening. My crab apple tree isn't very well either & I see it as a weird & bad portent (when in fact it's just a tree). The wet mild summer last year gave it bad fungus /mildew which it's still got & the winter wasn't cold enough to kill it off. It didn't blossom and it's leaves look a bit pathetic. I only bought it for the blossom really. There was no garden when we bought the house, just earth and rubble so it was the first thing I planted 5 years ago. Oh well, I would buy a new mature tree and get it taken out if I can't rescue it but I think they cost more than 22 Maine Coons. No chemo last Friday which was gutting, but new blood seems fine. Supposed to go for blood test tomorrow. Onc has ordered full blood counts x2 a week which is all nice and academic for her but I like @Stomacharmeleon also wish to stamp my foot. (I am sorry, that sounds truly awful and tantrum inducing, and I know just how you feel). In fact I refuse. It's a bank holiday and some of the roads here are closed. I'm just OVER going to hospital; it's FOUR times a week minimum with blood tests, pre-chemo & chemo, although we are trying to get one blood test at my GP I can actually walk to. DP has to drive me to hospital & he's bloody grumpy atm.

Every day I'm not having treatment I feel like a sitting duck to be honest. It's only Sunday night but I sort of just wish Friday was over and done with & I had some more chemo in me.

Oh and my PICC line is bloody annoying me. It's just THERE. Itchy. Uncomfortable. Can't use right arm properly. Keeping it in for my goal of 11 more chemos sounds like UGH. Although it is magic in hospital when they're not stabbing you with cannulas. Good and bad I guess!

Although I have had a lovely not-chemo weekend pottering, reading, some light gardening, and painting and playing with DD.

@mowly77 I hear you about the picc line. I had mine for 24 weeks and I had a complete love/hate relationship with it…loathed it unless I was having blood tests/chemo/blood transfusions etc, and then it just made everything SO MUCH easier…but god I hated it the rest of the time. No advice how to make it more bearable. Sometimes it was fine, other times it flared up and was incredibly painful. Full sympathy here for you…!

Hope everyone has had a restful bank holiday weekend…sending love to everyone as usual xx

@mowly77 have you considered whether you are allergic to any of the PICC bits? I couldnt have the nickel skin clip due to allergy, and I reacted to three types of skin dressing. I ended up with a bespoke arrangement with cosmopore with a window cut in it and sealed with a clear plastic dressing. Anything else made me itchy and red. Ask the nurse when they dress it what they think.
I’m stuck now in Wells next the Sea with a leaky fuel pump. Nothing will happen till after the bank holiday but it’s lovely here and very restful.
love to all
Top

Thanks @TopOfTheCliff they already didn't put nickel in it; I'll ask the nurse when they dress it this week re: the dressings though. I think it's just incredibly fucking annoying to my skin and self to have something stuck into it; I react sometimes to the tiniest bit of thread on clothes etc. But the dressing change might help. Sorry to hear about the leakage but at least it's a restful bank holiday.

Hi everyone. I stumbled across this thread in slight desperation. Apologies if I shouldn’t be here but really struggling with feelings of being ridiculous and silly versus pretty worried. And wanted to know if the lack of feedback is familiar or whether I would know by now if anything really sinister was going on.
I had a referral to a colorectal consultant a few weeks ago. Then had an urgent CT scan and bloods done within a few days. Was warned colonoscopy would be delayed to due to covid delays. That’s now been scheduled but is still a couple of weeks away.

I’ve contacted consultant’s secretary following a letter which said he felt a fullness in abdomen and had requested urgent CT and colonoscopy. Had some emails back and forth but it’s very confusing. Has suggested I need a telephone consultation to take me through results but the clinic list is fully booked for weeks. Said she would seek to bring it forward but not heard anything. If the CT and bloods are okay I’d like to just know now and then deal with colonoscopy.

Consultant asked for family history of cancer in initial appointment and suggested the need for genetic testing.

The lack of feedback is really doing my head in. Is it normal not to get test results as they are done? Surely if worrying results then I’d be told? I’m main breadwinner and have two young kids. One with recently diagnosed SEN. Just been promoted and have a big international business trip starting in a few weeks. I don’t know if I’m just being a worry wart or what to think.
I’m horribly worn out and can’t stay awake when I’m not at work - have been like this for months. Keep falling asleep in the car when pulled up picking up kids or getting into the car after supermarket. I have a number of ongoing symptoms but at this stage worried that it’s all in my head. Just wish to be told so I can work out next steps or give myself a slap for falling into a pit of worry when other people are truly and genuinely battling this horrible disease.

I don’t really know what I’m asking. Reassurance I suppose that if anything horrible was in the scan then I’d already know. And it sounds like I’m just being silly?

Hi @parttimecarriemathison please don’t apologise for being here and you’re not being silly. Obviously am not a doctor but it sounds like the admin side of things is a bloody mess. And you need to be calm, collected, brave and very very insistent that they give you the results from the bloods and the CT. You’ve seen a consultant so you have their name so get their secretary’s name if you haven’t spoken to them already and call them back. Or speak to whoever said they would “seek to bring it forward” and get them to bloody well do it not seek it. Unless they’re looking down their sofa cushions for a spare clinic slot … was that t the consultant’s secretary ? Some of them are very helpful and organised. I’m expecting many are not however.

I spent most of my time immediately post-diagnosis shouting at people on the phone to get me an appointment with an oncologist, but yes waiting times are shite now. That being said — a telephone consult is usually quick and they usually do them outside clinic hours. At least in one hospital I know of. There is no reason you should not have one ASAP. Forget the email back and forth it sounds confusing. Get on the phone and be the squeaky wheel. Sadly it’s necessary as no one bothers to go out of their way to help you otherwise I find. I could go on but I won’t. Massive sympathies to you, of course the worry is dreadful. Just stay calm and give them a call tomorrow morning if you can. Hope that’s marginally, slightly helpful.

Sorry just re-read, see it is indeed the secretary with email back and forth. Call them and see what they say.

@mowly77 thanks so much for that reply. Super helpful thank you. It’s a new and confusing system that I simply don’t understand. And I don’t want to be THAT person bugging everyone for answers if it’s not warranted. But equally I’ve only got myself to be an advocate and it all seems completely confusing. On the one hand I feel like the urgent testing and cancer word being part of the conversation is now totally at odds with the silence and lack of follow up. And if that’s because there is nothing serious then I’d love that reassurance and I won’t waste any clinic time.
But it’s been only a few weeks and still got a test to go so maybe this is just how it is.
I will get on the phone tomorrow and see if I can get any sense.
I really appreciate the reply and sorry for de-railing the conversation.
As you were.

parttimecarriemathison
unfortunately, you do have to to be That Person a bit.
Phone the secretary, hassle for results, insist on things…. It doesn’t mean being horrible, simply horribly, annoyingly persistent.
i Hope everything ends up ok for you.

You didn't derail! I feel like we're all over the place here frankly. Yes, you have to be your own advocate, that's exactly it. BE THAT PERSON. You might at least get some understanding and sense of how their system works if not an immediate clinic slot and non-diagnosis or diagnosis.

Part Welcome - In pre covid times a longer wait and answers by phone would normally almost always mean not cancer but there are delays at the moment and its less clear cut. I have breast cancer and for the bad results I have always been seen in person (alone due to covid). So the phone could be a good sign but the best thing is to keep pushing for results. My first results took a week, my second which was CT and MRI I think it was 1.5 weeks and surgery results both times was 3 to 4 weeks. But times vary from hospital to hospital and are different for different cancers. I would chase.

Wells is a lovely place at least Top there's a nice place there that does fresh crab /seafood, Wells Crab House if you like seafood. We also got some very nice fish and chips there. Seals not far away too at Blakeney if you have not passed them.

Mowly Sorry the PICC is annoying. I am expecting to be annoyed if I have one and would probably want to rip it out but would be too scared to. Its just one more thing, already got one damaged arm.

Cleaner was a great success and DH completely converted and downstairs is now so much better and upstairs was OK anyway. DH also came up with a list of things he is going to sort though then mainly napped though has made some lovely food, crab salad for lunch and a rocquefort, pear and walnut salad tonight and lovely roast and homemade apple strudel yesterday so being spoilt on the food. No chemo again this week, yay, but hospital on Wed for bone scan and on Thurs for oncologist and bloods so does not really feel like a week off. In theory restarts next Monday but we will see, not sure how fast they can arrange things. And Mr Floof arrives on 14 May. DD has started GCSEs and still trying to get DSs school changed, call on that on Tues. Last counselling on Friday though will be OK without now I think she just gives me sympathy which is nice.

Thanks @MrsWooster and @mowly77 that’s somewhat given me permission to myself to chase up and be persistent. Thanks so much. Will let you know how I get on.

Thanks for that feedback @Silkierabbit it’s really helpful.
So sorry you are going through the mill x

@parttimecarriemathison think of it this way - better to be That Person than One Who Fell Through The Cracks. And there are way WAY too many possible cracks to fall through in NHS cancer diagnostics and treatment, regardless of how many people say they were treated "brilliantly".

@parttimecarriemathison I was a GP for more than 30 years until the cancer invalided me out. My advice to patients was always to try to befriend the secretary and be the charming but very persistent patient that called every day until the issue was sorted. Give them your mobile number and say you are on hand for calls, cancellations etc. In my experience as a patient bursting into tears helps too! They will want to help but are probably drowning in work. You need to get to the top of the pile.

In a very similar fashion my quest for engine parts is becoming an attempt to charm a kindly marine engineer into posting me a new fuel pump today not after the 150 other orders they have in their inbox! I haven’t cried yet though. It’s hardly serious compared to cancer.

Regards to all and best wishes for results and treatment
Top

@parttimecarriemathison
Yes. Totally agree with Top and pps. Everything seems to be in a state of flux with waiting lists. Not surprising when staff and patients are still getting covid and appointments are subject to constant review. So keep ringing the secretary.

Another route is via your GP. Am assuming your consultant's letter was cc'ed to them. But, even if not, they might be able to jog some memories from their end.

I had a hemi-colectomy for colon cancer on 31/10/19, no symptoms, picked up by chance through a monitoring CT for a Gynae issue. Pre-covid and pointless to compare time-scales. But I think that you would have had your colonoscopy expedited and been told to eat a low-residue diet if there were any danger of a blockage. This happened to me, post scan, pre-colonoscopy. I'm Stage 2, top end.

Thanks @TopOfTheCliff @Thymeout @HerbalRefreshment for the feedback and thoughts. Very much appreciated. I tried to call today. Left a message but no reply. I will keep at it…!

Hi everyone, hope you’re all doing ok?

@parttimecarriemathison echoing what everyone else has said; just keep on at them, call everyday if need be!

@mowly77 how’s your picc line now? Is it still playing up?

I have my surgeon appointment tomorrow to discuss the type and date of the surgery I’m having (had a contrast mammogram last Friday). Feeling absolutely sick with nerves.

Sending love to everyone as usual xxx

Picc line’s calmed down a bit today, I had a bit of morphine in sheer desperation last night … but remembering not to use my right arm in an exciting, invigorating or stretching manner is doing my head in. Still bloods tomorrow for pre-chemo so I’ll be glad of it then - thanks for asking @TwoBigNoisyBoys and my sympathies for your nerves. It’s just the worst. I hope the consult with surgeon goes well & honestly I still would pick surgery over chemo any day. But good luck and hope appointment goes well and gives you some reassurance.

Hope it goes Ok tomorrow TwoNoisy I have also been a sobbing, bag of nerves today and DH of course was grumpy about that but has now come round but just feel so depressed atm. Dexa tomorrow and then oncologist on Thursday, no idea what is happening with chemo / picc / bloods though am getting past caring. I spent day on phone trying to sort ehcp and the little bit of help we were going to get has been taken away which finished me off and starting me sobbing. And cahms support for mutism is give the child e-mail links so they can teach themselves not to be mute after 4 years on waiting lists.

Chemo #5 today. Feeling negative, after hearing both BRCAs have come back as negative and so it’s unlikely PARPs will be prescribed. Struggling to find my positive visualisation pants for this round.

@MrsWooster I am both BRCA1 and BRCA2 negative and am on a PARP, Niraparib. I have ovarian cancer. Sending you a hug, it sounds like you need it Xx.

@Silkierabbit oh dear, that sounds so hard, you have so much on your plate at the moment. I know the feeling of being beyond caring, I've been there and it's awful. People would look shocked when I said this but I'm sure it's very normal, you just get so worn down with it all.

@TwoBigNoisyBoys how did your appointment go? The nerves are awful throughout all of this and for me, never seem to ease, even two years in.

@parttimecarriemathison have you had any luck getting through today? I echo the advice of everyone else, just keep on at them until you get what you want. It's so hard when you're consumed with anxiety though. I hope I can offer some reassurance when I say that I had a CT which picked up the tumour on my ovary and was called about 10 days later, in that time it had already been discussed at an MDT.

@mowly77 hoping your PICC line has settled a little today.

Sending love to all Xxx

Thanks Fantasea
mine’s primary peritoneal cancer, so it’s very similar to Ovarian in form and treatment. I hoiked my pants up and emailed the Prof, asking for a discussion about options, inc Niraparib so we’ll see. My ca125 has gone up as well, so that has been another blow. Fuck cancer.

Hi everyone. Surgeon appointment today, my surgery is booked for 23rd May. I’m having a lumpectomy and removal of the 2 nearest lymph nodes, to check if there’s any spread (none showed on the CT or ultrasound scans, but apparently they’re only 85% accurate, so this is being done as a precaution). The lump itself has completely disappeared, but there’s some shadowing showing on my mammogram. The consultant says he suspects it’s scarring from around the lump, but obviously won’t know for sure until he operates and the results are sent to pathology. He says he’s hoping this op will clear everything and there’ll be no need for any further surgery, but it’s still a possibility, of course. After that I’ll be having radiotherapy, but again, the type and length of treatment is depending on path results. Also potential oral chemo, again, path results depending.

So on the whole it was fairly good news but I’m feeling absolutely battered and shell-shocked, no idea why as I was expecting this, and potentially worse news. So I don’t know what’s wrong with me to be honest?!

Thank you everyone who asked how it went, you’re all lovely.

I’m sending everyone love, as usual xxx

Oh man everyone’s going through it today. Sometimes it’s just like this isn’t it? Fuck cancer. Big hugs and sympathies to all. @TwoBigNoisyBoys i don’t know about you but it seems worse when something concrete happens like telling you surgery date and type, even if it’s not as bad than you feared, because it makes it more real? Obviously it’s real all along but actually having to confront that is really hard as a lot of the time it’s academic and in your head. I felt the same about my first chemo appointment. Altho’ now I would love another one frankly given all the delays. Hopefully Friday if bloods from today are ok. But I will be nervous wreck Thursday night even though I need it. Oh and my picc line is no longer ok after being cleaned and dressed by a rather too thorough nurse. She picked all the scab off and I thought it was healing nicely! It’s agony now, cheers, great. Obviously it’s necessary but fml. & well done @MrsWooster for hoiking your pants up. I have to hoik mine up tomorrow and call my onc’s secretary who’s MIA and I need some documents for please god third time lucky appointment at Marsden Monday. Oh also I was reminded about the idea of the cult of positivity around cancer the other day, Deborah Orr wrote about it. I so agree. Sometimes there’s no positivity to be had at all and I hate the idea that there should be, or that it will help you. Even the nurses in hospital are at it. I mean I guess they can’t join in with doom and gloom professionally speaking but honestly. I don’t want to be told to be positive by some useless A&E nurse who has never had a serious illness in their life.