Cancer Support Thread 87 - everyone here is so supportive.

[LemonDrizzle10]

New thread

@SierraSapphire I just feel like an inconvenience to them when I ask questions. I get they see this day in and day out and I’m not questioning their experience or expertise I just want to understand what’s going on in my body 😞 the number of times I’ve been told “oh you don’t need to worry about that” when I’ve asked for details about my tumour or what it means when it says grade 2 IDC AND low grade DCIS and so many other things I’ve heard or read in my notes along the way 😞

@WorryMcGee I’m sorry you aren’t feeling supported. One of my friends is a psychologist at the cancer centre where I’m receiving my treatment and she often works with women who are making the decision whether to take hormone suppressants after breast cancer. I’m in Australia so it’s a different health system - are there psychologists you can speak to where you’re being treated? She says part of her role is helping people develop their ‘narrative’ - what to say to friends and family (and nosy acquaintances) who question your choices.

I’m sorry so many of you have also experienced the intrusive questions from randoms. How big is your tumour, what stage are you? I completely agree @ClashCityRocker I suspect they’re going to google to find out whether I’m likely to die.

Chemo is the other one, OMG so many questions! I’ve also gone public on fb recently and my mission is to set the record straight about chemo! Mostly that there’s so many different types, and everyone’s experience is different so don’t tell me about Uncle Paul who had chemo in 1984 and how horrific it was because it won’t be the same! Yes even if Uncle Paul had bowel cancer ‘just like me’. Oh he died, did he? Cheers thanks for sharing do you feel better now? I had a friend of my husband’s stop us in the street the other day and ask ‘Is chemo as bad as everyone says?’ I mean how do you answer that?

Building on this theme…does anyone get to see the same doctor/oncologist? Since my initial diagnosis I’ve seen a different doctor every time (5 and counting) bar the one occasion where I requested to see the same guy twice…he looked so nervous that I had done that!
I find it really difficult as there is no chance of a rapport or relationship allowed to build. Just wondered if it was my Nhs trust policy or the norm?

And actually I’ve never even met my named ‘consultant’!!! 🤦🏻‍♀️

I got to look at my pet and ct scan results today and honestly it made me feel sick. I've got tumours in my lungs, spleen and liver. I've cried a lot today. On Monday I start 2 combined immunotherapy, and I'm on a clinical trial where I can have surgery after starting immunotherapy so my body might be able to see the cancer cells and fight them off? It's a bit confusing. I've got a scan booked for 6 weeks as apparently we will know by then if it's doing anything. I do need my lymph nodes out on the other side that's for definite.

It's insane. All this caused by one mole.

I'm done crying though. It's shit, I've been given a shit lot but I'm going to do exercise and eat well. I'll get the results of if it's working on my birthday. Happy 32nd to me! 🤦‍♀️ bring it on.

Hope you're all okay.

Hi @FangedFrisbee

I am so sorry to hear that and I am not surprised you cried a lot today.

My chemo and immune therapies / surgery were also in that order: I started chemo in July last year, added 2 immune therapies in Sept and then surgery in December. They did MRIs and ultrasound to check the cancer's response to the treatments.

AFAIK it's getting more usual now to do it this way round, so they can see if our bodies respond or not (and maybe make it easier in surgery?)

I think you've got exactly the right plan with exercise and eating well. I hope you find the immune therapies ok to deal with; I know they're different ones to yours but I do find immune therapies much easier to cope with than chemo was.

I am keeping my fingers tightly crossed for you, please do keep us updated xxx

So sorry to hear that Fanged sending lots of love. That's not great results on your birthday, maybe they can change it if you ask.

I had the same oncologist through chemo and did not see her that often but we had long chats as I love to research and so we would talk for an hour or so about things each time. She was so lovely and kind. Radio was someone else, surgery it was a different person each time, had 4 surgeons, first one was awful, rest were nice. Though ours all seem to be half private so don't work many NHS days and masses of patients.

I didn't tell too many people about my cancer to reduce the number of stupid comments to deal with and people who just want gossip. It was very surprising who was great and who just would ask for gossip then not contact you for 2 months. Not who I expected at all.

@SummerCycling thank you. I am really nervous about it working. So the trial im on is due to usually in melanoma they do surgery first, which they did for my original mole. However they also removed a new second primary and that one has spread to lymph nodes too, it's on the opposite side and randomly apparently has been growing and spreading silently.

So immunotherapy for 6-8 weeks every week as an induction, then scans, then removal of those lymph nodes in my neck and hopefully a liver resection as I have 5 tumours in one area of it.

If I hadn't got the melanoma diagnosis on the other side of my body I wouldn't have had a clue.

@Silkierabbit yes I think that might have to change! My surgeon is absolutely lovely, I worked with him for about 8 years and I really trust him. I've got 2 oncologists at the moment one for the trial and one for standard treatments and scans etc.

I got sick of the constant probing for info from people I hadn't seen for years/ people in the village I live in asking how I was in the middle of the street. So I figured once family and friends found out that's it. Just get it on Facebook, stop the constant speculation, more so for DH really, so he can get the support he needs. He needs his friends to know and he respects my privacy enough to not tell them himself.

I feel very 'lucky' to be so close to the Christie though

@spiggydit welcome to the kindest thread on Mumsnet. You need to keep busy and distract yourself from doomscrolling and thinking the worst. Can you weed the garden or decorate a room? I tried the Calm App while waiting for tests and results and that helped. Learn yoga breathing as it will help with everything at the hospital too. @WorryMcGee and I both did Rage cycling which does wonders for your Strava PBs. Just be reassured that your team will be thorough working out what is wrong and if it isn’t cancer we will all celebrate with you.If it is then we will hold your hand and help get you through whatever is to come.
I have been on these threads nearly three years as I was referred to 2ww in June 2020. It is a surprisingly upbeat place to hang out considering. There is always somebody around who can give you answers or tell you where to look. Just Don’t Google!

@WorryMcGee Same too about not bothering the CNSs. One was even sharp with me when I called to say the Royal Marsden had found an ovarian cancer that they’d missed and told me I couldn’t have an appointment with the oncologist because I’d already seen him. And when I went for my hysterectomy although she was my keyworker she didn’t say a word to me in the morning when I was sat there waiting even though she was standing around chatting with the other nurses a few feet away from me. The problem was that my situation was quite unusual, so I found because I’d done so much reading I knew more about it than the nurses did.

@Remaker I haven’t seen any sign of psychological support at all, I don’t know whether there is any.

@Whattodotomorrow I’ve seen the same oncologist other than once when I was called in by a registrar and he couldn’t answer my questions so I was referred back to the main oncologist. Mine is for endometrial though which is a less common cancer so I suspect it’s only a couple of main consultants anyway. I asked to see a female consultant originally, but she got angry with me that I questioned her treatment plan, so I had to swap to the other one, who’s male. I don’t feel comfortable having him, examine me though because of previous sexual assault and because the whole experience has been quite fraught and he still won’t acknowledge the second opinion from the Royal Marsden. so I wish there was an option to see someone else. I thought about changing hospitals, but because I rely on lifts and support from friends anywhere else would be inconvenient.

Sorry you’re going through all that @FangedFrisbee. Fingers crossed for the treatment and trial, things have been changing so quickly. I think I posted upthread about the research about the microbiome supporting immunotherapy, Dr Will Buscewicz and Dr William Li have both written books and been on podcasts about the microbiome and both have mentioned cancer immunotherapy if you’re interested in exploring further with your eating well plans.

I was also quite private about who I told about cancer. I suspect more people know and I have spoken to me because I was fine about my DD telling people so she could get support, and it’s a small town. Other people probably suspect but are too polite to ask me directly! And then there’s other people who have absolutely no idea at all, and probably just think that I have cut my hair into this weird two-length style because I think it looks nice!

@Silkierabbit I use various apps to order drugs. The Superdrug one is excellent as it tracks the order and tells you when it arrives. The Airmid one or the NHS one mean you can also check your blood test results. It saves all the trekking in and out. Small gains!

@TopOfTheCliff Thank you so much - currently sitting in the CT scan dept drinking some strange fluid ready for my scan. I can't fault the NHS it's been very slick and well organised so far. I feel parachuted into a strange parallel world full of worry where I can't concentrate on or remember anything

I’ve just had a very stroppy phone call with the breast clinic booking people - I had a letter through this morning with an appointment on 16 June which I can’t go to as I’m going to the Springsteen gig in Birmingham with my best mate - booked over a year ago before I even knew I had cancer. She made me feel like this was an utterly trivial reason for cancelling and how dare I have any kind of a life whilst also having cancer. I haven’t rearranged a single other appointment but this is important to me and I would be devastated to miss it. Gah, and I was feeling so positive about having my last chemo today

Morning everyone, I'm sorry for those who you who have received bad news this week and are struggling, big kisses.

I had my second biopsy results yesterday - to discuss what the additional areas in the same breast that the MRI discovered were. Turns out it is part of the original tumour, its just a lot more extensive than they thought, I forgot to ask how big it is because we then moved on to surgery options. I requested a mastectomy and reconstruction. They have offered an immediate reconstruction with implant which I was pleasantly surprised about, thought the reconstruction would be delayed. I can go back later on and have the implant removed and my stomach tissue used instead - and a matching reduction in the other boob - but only if I loose 20kg. I'm a size 16 but only 5ft and they will only do this if your bmi is under 32 apparently. Anyone else heard this? It's not that I'm surprised, I just hadn't heard it mentioned on any of the forums or chats. We recorded this appointment as between us my partner and I can never remember everything and they talk too fast for him to write everything down :). I did request not to see the DR I don't feel communicates well which went successfully. I saw a different consultant for this appt, I've seen three different ones now, would be much more efficient for me and for them if I saw the same one each time.

The really good news is that if my lymph nodes are clear at surgery I shouldn't require chemo or RT which I am over the moon about. I feel bad for sharing my good news when so many of you are really suffering but I haven't told many people in RL as I have not been in contact with my Dad and evil step mother for at least 10 years now and I don't want any information about me and what I am doing/how I am doing to get back to them. Also, I don't want everyone in the world knowing my business.

So now I am waiting for a surgery date. Back to waiting again :)

Morning everyone, hope you’re all feeling as well as possible.

Ive been in a lot of pain the last few days (liver tumour), pain at site and in back, intolerable levels at times. I’m waiting for treatment plan (the delays for further scans are awful), and I’ve just been prescribed pregabalin. Does anyone have any experience of this drug? I’m willing to take anything at this point, but just interested to know if others have been on it.
Big hugs to everyone here. X

@bringonyourwreckingball I’m so sorry and really angry for you 😡 it’s been said on here before - this is another side of this shitshow that no one gets, the expectation that you will be available 24/7 at the drop of a hat for months on end and be grateful for it too. How dare we try and have a life and do things to try and cheer ourselves up. I hope she rearranged it in the end so you can go?

Ooh @WilsonMilson that sounds uncomfortable. I hope the treatment starts to shrink things soon. Pregabalin is a painkiller that is used for epilepsy and to suppress nerve pain. It is nicely sedative so should make you feel calm too. I used gabapentin which is a related drug for the excruciating bone pain I had with paclitaxel and it worked nicely. You usually have to build it up slowly and not stop it abruptly. It also has a street value so is (I think) a controlled drug like opiates. As a GP I prescribed it quite often without too many issues. Some people feel too sedated on it but it works well for pain. I hope that helps.

@Scandimandy hooray for positive news going forward.

@bringonyourwreckingball just lie and tell them it’s your favourite aunt’s funeral or some other family event. Why should they judge you when they muck around with our appointments so often?

I am worrying about a lovely person who has rung me for advice. Her baby fell off the bed at 6 weeks and long story short she is stuck in hospital being investigated for child abuse. Her other DC has a birthday but she isn’t allowed to leave hospital or she will be arrested! The baby is fine but has a small fracture which is why they have detained her. It is all so traumatic for her and she is the sweetest most patient gentle soul. Nobody else in her family knows so I can’t discuss it. Plodding through cancer treatment is a breeze compared to that!
Sending strength as always
Top

@TopOfTheCliff thank you, I’ve been prescribed quite a small dose to begin with and am then to increase once I see how I am on it. Would take anything to be out of pain at this point, I’m sure you know how that feels. Hope you are keeping well!

@bringonyourwreckingball hoping they could give you an alternative appointment, that really is a rubbish way to treat you. No-one sees this side of cancer, how we have to be immediately available 'tomorrow' or as I've had, 'this afternoon' and how having a normal life outside of treatment and appointments is such a nuisance to them all. Good advice from @Top I shall try and remember that one!

I feel fortunate to be retired so it's only (only) my personal life being mucked around. For those working, I imagine most employers aren't delighted with having to accommodate absence with no notice. I have to drive to collect my chemo tablets and it's a two hour round trip as they won't deliver anymore. They prescribe 28 days at a time and each cycle has to be approved so I run out each month. Last month I spent two whole days trying to get through to the hospital pharmacy and liaising with the chemo unit, only eventually to get my hands on them an hour before they closed on the Friday evening.

@Fantasea @WorryMcGee exactly! I know it’s not a big deal in the grand scheme of things but I have dropped everything to attend every appointment and take every call no matter how inconvenient including getting very unpleasant biopsy results alone because I had no notice to get someone to come with me. They have managed to rearrange this one thankfully. I’ve been very lucky that my work have been very understanding but at times this cancer lark feels like another bloody full time job!

Yes, cancer treatment is a full time job.

I've had days where one treatment was at one hospital then another at the other hospital that afternoon. Those hospitals works together and the patients are treated at both, we have no choice, but the hospitals are uncoordinated.

For example, where I had daily radiotherapy, that hospital gives its own patients (people who are only there, so not the joint hospital patients) the immune therapies I am on, yet wouldn't give them to me the day I was due to have them despite my radio appt in the morning, so it was

(1) go to hospital (A) for radiotherapy in the morning
(2) go home
(3) go to hospital (B) for immune therapies in the afternoon

Reason they gave me for not doing the immune therapies at hospital (A) while I was there for radiotherapy was "capacity". It is a 5 minute injection with a 15 min observation time in case of allergy.

I used patient transport from hospital (A)

@TopOfTheCliff

I love apps too!

Do your blood test results show up on your NHS app? Mine very rarely do, so I have to ask for a print out at the chemo unit each time.

I've got the NHS app open now and looking at 'Test results' it just includes a very minimal selection of BP results, then for December says: 'ECG' without any further info. November has a lot of blood test results though. A bit random then!

My hospital app only has my upcoming MABs appt, even though it has icons for test results and letters etc, there's nothing in those sections.

I'd like to track my electrolytes, kidney values, WBC and RBC in particular. my lymphocytes are still far too low, I wonder how long they take to recover from chemo, radio, ? I am due to finish MABs in September.

@FangedFrisbee

That's great your oncologist is so lovely. It really matters I think.

Mine was so unfriendly, distant and unhelpful on diagnosis, then much nicer when I saw her again this year. It felt so different to be dealt with more kindly. We are already so sort of fragile emotionally with cancer that a kind manner goes a long way.

I'm glad to hear they can operate on and remove the liver tumours.

@TopOfTheCliff my hospital blood tests don't show on the NHS App but I so wish they did. I have to have my CA125 tested every month and would love to just know it a few hours later rather than having to wait over 24 hours each time with my anxiety on overdrive. On the printed blood form from the hospital there is a section 'copy results to GP' which I wonder would make them appear on the App. I expect the hospital aren't keen to offer this though, I have been tempted to fill it in myself but was worried that would 'void' my form.