Cancer Support thread #78 - Newbies welcome

[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

Good morning everyone,

Anyone who read my original post will know that I had a complete breakdown when I was told about my cyst and even before I knew a few weeks later that I had stage 1A OC I was on medication for depression and anxiety.

I was absolutely unable to cope with the situation and even on the day I was given my results I had my fingers in my ears so as not to hear them. Thankfully my daughter was with me and managed to coax my fingers out of my ears and I eventually let the Dr tell me a very basic version of my results before I got up and left her office.

Anyway a few months on I’m now able to cope with finding out more about my situation and a relative will get my results/pathology report and go over them with me. I still only feel comfortable doing it with them though and by Thursday I should know whether I’m low or high serous and what my grade is.

It’s absolutely minuscule to what other people have had to do but for me it’s a huge step and I’m happy that when I go for my first check up in May I’ll be able to cope better.

The mind really is a terrible thing when it goes wrong.

@Babamamananarama I have a PICC and what you are describing sounds normal to me - I've found that how the nurses dress it can really affect how much I notice it and whether it is comfortable. I was told though, that if I felt it wasn't right I could always go and get it re-dressed, so if you are worried I would definitely call them.

I have become a lot more blase about the PICC as time goes on, so you do get more used to it. Apparently, the times to worry are if the thin blue wire becomes exposed (the one leading directly to the entry point in your arm), because apparently this is more fragile than the tubing and can break if it gets kinked; or if the plastic tubing digs in and irritates the skin on your arm, because then there is a risk of infection. But if you are worried I'd call and check - my experience is they honestly don't mind!

Interestingly, I called Macmillan yesterday to ask about my CT results. The nurse I spoke to suggested that my chest pain could be because they inserted my new PICC too far and the tip is irritating me above my heart. This would definitely fit, as the pain has only been there since the new insertion. I will check with my oncologist tomorrow. Apparently it is very easily fixed - they just need to tug the line out a bit.

@Babamamananarama my picc line was uncomfortable if dressed in the 'wrong' position, why not see if you can get it looked at and re-dressed? No point in being uncomfortable for a week if it can be avoided. And I think it's easy to feel really vulnerable when you know it's feeling not quite right x

@Anne1958 good luck with the pathology results. I hope they bring good news. And yes, the mind is a powerful thing. And when it starts misfiring with negative thoughts and added into the cancer mix it is a powerful & explosive situation. I keep rewinding my conversation with onc. from last Friday, every word and what it meant/could have meant. A proper verbal dissection. Not healthy at all.

I have finally taken the plunge this morning and fired off an email to Maggie’s. A huge step for me! I was sobbing before I pressed that “send” button. But I did it. I feel like talking about it all the time and my poor DH is at the receiving end. So I want to take some burden off him and get someone else to listen to me rant with my worries.

@Bloodybridget good news on the last chemo that must be such a relief!
Wishing those well waiting for results.
@balkanscot well done for emailing maggies. When I phoned last week the lady was just lovely and they are doing covid safe face to face meetings which is so much better than over the phone (although they will do that too if you wish). We have so little control over anything in our lives on this hideous cancer road actually seeking out support feels a tiny bit positive.
Hope today we all manage to have at least moments of calm and peace.

@backformore I had the kitchen sink regime so they did everything to the max. My lump was Grade 3 IDC ER+ and HER2+ 22mm but the sentinel node was 25mm. They decided I would have a tier 1 and 2 axillary clearance even before I had chemotherapy. The repeat mammogram and scan after chemo showed the tumour and node had disappeared but they still did the same procedure and aimed for clear margins on the ex-tumour. They removed 29 nodes and only the original one showed any scarring from the cancer. I am strangely grateful for the over treatment while unsure if it was because I had a nastily aggressive cancer or because I am a doctor and they were being super cautious. I think if you are known to have lymph node involvement you get a total clearance, especially when it is a gobstopper like mine!
The aftermath of surgery was gruesome with seroma, wound infection, fistula and nerve pain but actually three months on I can say I am properly healed and getting back to normal activity. I also have the peace of mind of having had every option for treatment.
Any more questions just ask!
Top

@balkanscot I also completely hear you. I also have no desire to go bungee jumping, I just want to live a normal boring life. I just want my old life back really. I need to talk about my diagnosis and treatment all the time and I feel guilty burdening my family with it, I feel awful about worrying them all the time but it consumes me. Good for you for sending off that e-mail to Maggie's, I can understand you sobbing as you pressed send, I am the same at the moment. I hope you can talk to someone who will make you feel a bit better. I was going to ring Macmillan yesterday afternoon to cry about my surgery next week to whoever picked up the phone, but I fell asleep all afternoon and then thought better of it. I am still a weepy mess today so will ring them after lunch. I know they won't be able to do anything as such, but just offloading my worries will help me.

I'm stuck in tunnel vision waiting for my appt - but just 2 days now. I have a private psychotherapist I've been seeing weekly for a few weeks - not sure how long I can justify the expense though. I think most of us can benefit from some outside-the-usual-circle support.

Dh and dd15 have shown no emotional response to my illness form the beginning. Talking to dh is somewhat unsatisfying and he has no idea how to respond. He just doesn't worry about it. As for dd - she is just not very emotionally engaged with anything people-oriented. Lockdown has been a walk in the park for her.

It's great that they are not upset but it's lonely for me. I blew a small fuse when they both totally forgot mother's day - I wouldn't normally bother about a thing like that. But this year - really???

There are the 2 parts to our situation as cancer patients. There is the existential angst of having a disease that could kill you. And then there's the experience of being ill - which for most of us - is actually the experience of treatment.

I struggle with both but I think my balance of the two may be different to many others. I wouldn't do even one more cycle of chemo if it wasn't potentially curative - I wouldn't do it just to keep going. I just don't love life enough to suffer so much for it and that's largely why I'm in therapy.

@backformore I had surgery last week, my situation sounds very similar to yours - HER2+, 4cm tumour, 5 lymph nodes involved. MRI and ultrasound after chemo and immunotherapy showed no signs of the tumour/lymph nodes. I had a 2cm lumpectomy and 2 lymph nodes removed, which were tested during the operation and didn't show any signs of cancer. Had cancer been found then I'd have had a lymph node clearance during the operation. I get the full pathology results later this week.
I live abroad so I don't know if node clearance like @Topofthecliff is standard for the UK. The doctors here don't really talk about the prognosis with different treatments, so I'm just hoping I haven't been undertreated!

Best wishes to everyone going through treatment and waiting for results.

Can I ask, would I be mad to get a 5 month old puppy just a few weeks before radiotherapy? Is the treatment really tiring? My DH and teenagers would help too, but it's me who'd really love a dog right now.

@bontopia that's interesting. I'm in the UK and surgeon has suggested a node biospy rather than going to full clearance - but my oncologist was rather shocked and disapproving of that! I gather though - that if necessary the clearance would be later as a second op - but I'll clarify that on Thursday. Original MRI was unclear but possibly 4 nodes involved.

Haven't had radiotherapy yet but I would love a dog!

Thanks, @TopOfTheCliff and @bontopia! Top, did you have to have a drain? That’s the bit that really freaks me out - I don’t want to have to deal with anything extra after I wake up! Bontopia, I’m in Canada so don’t know how the protocol compares - something to ask at my appointment! Glad yours was straightforward 😊

Radiotherapy and the stress of starting treatment gave me a horrendous migraine last night. Turned up for my first chemo this morning looking like I'd been on a 3 day bender and feeling similar.
However, everyone was lovely, even my scary consultant. I've been given extra anti emetics and a private room. Probably for the best given that I vomited on one of the nurses.

I've decided that my role in this is to turn up and let the professionals make me better.
Like everyone else I'd just like my boring everyday life back. This whole experience has made me sad beyond anything I've ever experienced. But I've my heart set on being lucky.
Huge hugs to you all

Maggie’s called me back, I have my fist session on 12 April. Just chatting now felt good, even though I was crying uncontrollably.

@Acinonyx2 Oh, that’s rubbish re: Mother’s Day. Different people react differently, I suppose. Maybe even putting a very nonchalant face but underneath feeling all those emotions quite strongly. As far as non curative treatment is concerned, I can see where you are coming from. I was adamant I would take whatever shit it takes to get rid of this thing in my lymph nodes, I was very “gimme chemo NOW!” During chemo I had a few moments of “I fecking can’t do this anymore, I can completely understand why some people say no to chemo” It was that bad. Luckily, I am not at the point of “managing” the cancer (although who knows, it all depends on the bone scan results in May) but I will have some serious thinking to do if I have to.

Radiotherapy, for me, was a walk in the park, compared to chemo. I did have a bit of redness around the treated area but nothing too bothersome. Tiredness hit me a few weeks after I had finished radiotherapy but again, nothing too debilitating. I kept functioning as normal, taking DS to the park every afternoon. I even managed to squeeze a feeble bike ride in between, too. I have never owned a dog but would say go for it, as it will keep you moving - not as strenuous as a bike ride or a jog but it’s all part of walking, physical exercise.

@FizzyOrange, @Acinonyx2 and @balkanscot I completely agree about needing to download onto someone. My DH has been amazing but I am very conscious that I just go on and on to him about everything. I hate the fact that I am constantly talking about cancer - I even bore myself - but I can't not think about it. A friend showed me an interview in The Guardian recently with Maggie O'Farrell where she said that serious illness changes you at a fundamental level: I completely feel like this. I think that I will never be the same. The old me is gone.

@Acinonyx2 I would have absolutely blown my top about Mothers' Day. I hope they both apologised! I have sympathy, too, with your attitude about not wanting to live, no matter what. A couple of times I have said to DH that I could not do this again if I needed to, and he has said "you will, because you have to". I just don't know if I do have to - I am not sure that the benefits of staying alive outweigh the hideousness of the treatment. Of course, I want to be here for my family - but I am not sure it would help them to go through this all again. I guess I just have to pray I don't have to make that decision.

@balkanscot long time to the 12th. You've got us in the meantime ;)

I just seem to be having one of those unravelling-losing-the-plot days which curiously seems to be aggravated by the nice weather

I just got a scammy crank caller and I just told him to 'f* right off'. And dd heard me

Quite satisfying though

@AlbertCampion god I so bore myself I just read that interview. I have a couple of her books and got Hamnet for dh - but it's not a book for reading at a time like this I think. I've told dh many times that I don't want to do this again. He's been warned.

@Acinonyx2 if you feel like unravelling go ahead. It sometimes helps to let it all out and have a bawl because afterwards there is calm!

@backformore yes I had a drain but typical doctor as patient it was faulty and the tubing fell off. DH tried to reconnect it but etc etc etc. Most people keep them until they run dry around a week but mine came out after 3 days on Christmas Eve because it wasn’t working. It was no bother and not painful at all. It had a sexy little vacuum chamber and a pump to play with too. I kept it for draining hydraulic fluid!

@AlbertCampion, you have summed it up perfectly, I bore myself too! I talk about it constantly too as it never leaves me. I carry it with me all the time and it is exhausting. I am not the same person I was either, it has changed me. I have found that a serious diagnosis sorts out who one's true friends really are. Several don't like or can't deal with the 'new me' and are giving me a wide berth which so upsetting and makes me feel that unless I can pretend to be my old cheerful self I am no longer worth being friends with. Cancer has already brought so much disappointment in so many ways.

I had a very satisfactory hour on the phone with a Macmillan nurse this afternoon. I do find they vary but I hit lucky today. She talked me through what to expect on my surgery day and was very kind.

Total hard agree on the realisation you aren't ever going to be the same person going forward.
One of the first things I did after diagnosis was find a private therapist. I've only just started with her but I absolutely want that space to unload to exist in my life.

My DH is pretty emotionally keyed in (he's training to be a therapist) but even he couldn't understand me saying the other day that this was never going to go away and that I was never going to be the same and that everything is irrevocably changed for me on a fundamental level - he responded with something like 'well you don't know that, isn't it too early to know?' Errr no. I do know. I think partly wishful thinking on his part as he is holding on very tight to the narrative (in fairness the one the oncologist has given us) that I have a very good chance of walking away from my 6 rounds of chemo and never having a recurrence. Whilst I am of course thrilled with that narrative, I'm not able at all to discount the other possibilities that also exist, particularly as I spend 6 days a month on a ward with other pretty ill people who are mostly at the point of running out of treatment options.

I saw an analogy the other day which said something like: a cancer diagnosis is like you are going about your normal life and suddenly someone coming up and putting a gun to the back of your head, and then telling you that they are going to be following you around for the rest of your life and that they may or may not at some point pull the trigger. That resonated with me.

Albert and lull thank you for the swift reassurance re the PICC - once you'd said that it's far easier to ignore so I'm going to see if I can get on with it as it is rather than go through the faff of redressing (which I don't really like).

In a small celebration, today I felt normal enough for the first time since going into hospital 5 weeks ago to drive myself to the stable and hang out with the horse that I help out with and my friend who owns her. Just getting that independence back was glorious - I'm trying to make the most of every day that I don't feel rubbish.

@Acinonyx2 I have just realised that my answer re: Mother’s Day sounded quite bkasé, sorry, didn’t mean to be so flippant. Of course they should have at least made a tiny bit of an effort. I got a bit upset as I got chocolates again, no breakfast in bed with a single red rose in a vase. But then again, I was glad they made an effort. I tried to savour those moments in bed, munching on chocolates and hugging each other.

@AlbertCampion look up Maggie O’Farrell’s interview, thanks. And a complete YES to this shit changing me in a very fundamental way. Which I had never experienced when diagnosed first time around. I guess because then I didn’t have to go through the hideousness of cancer treatments, it was just lumpectomy, preventative double mastectomy with reconstruction (even though that was a monster, 12-hour operation and a long recovery time), oophorectony (also preventative). Didn’t feel half as changed as I feel now.

@FizzyOrange exactly that!!

The counsellor is on leave next week, hence 12 April. But you will all definitely hear from me until then, I have so much loaning to do.

Whenever I talk to any other parents in the play park I just keep thinking how lucky they are, having to worry about the usual parent things. And how lucky their children are as their mums will maybe be around for much longer than I will be for my DS. And that thought stabs me right in the heart. Every. Single. Time.

@Babamamananarama that analogy is spot on. So, so relatable! And yay for feeling better and getting out to the stables. It is an unbelievable feeling, to be able to do something like that during treatment. Little nuggets like that are worth their weight in gold.

I was told on Friday that my recurrence happened because of a dormant cell. I didn’t even have any lymph node involvement last time. And both of my breasts had gone. And yet it still survived, bastard that it is, and was growing for goodness how long. It may have been growing ever since 2017, and yet I was thinking I was on the other side. Albeit growing slowly, according to my onc., don’t know if this should be treated as a small mercy.

It’s just this bastard “old injury” that is now causing me to tailspin.

I have been told that I will be expected to walk to theatre next week. I checked this with the Macmillan nurse today who explained that they don't like people 'lying around in beds as there is a risk of blood clots'. I mean how far away is the theatre, surely another 5 mins on a trolley won't increase anyone's risk that much? I feel that walking is going to make me feel very exposed and uncomfortable at a time when I know I am going to be upset anyway, I feel like I am walking to the gallows. AIBU?

@balkanscot not at all - it's not like me to be upset by that kind of thing usually anyway. Totally get why a recurrence would have you stewing - and this added scan is just insult to injury! Hopefully, the fact they are waiting until May indicates they're not expecting anything.

@Babamamananarama good analogy. When people suggest I will be able to put this behind me when I am 'cured' I really grind my teeth.

@TopOfTheCliff I do feel a lot calmer now actually! It's like bursting a pimple.

@FizzyOrange oh lordy I can just picture the Walk. I've heard this too - maybe a general thing to cut down on bed usage. I think we should go the whole hog and channel Anne Boleyn.

Hi Fizzy yes you do walk to theatre I can't remember how far it was ,not to far a porter walked with me. When I got into theatre I was quite distressed and the theatre staff were lovely. I was even given a 'sip' of the anaesthetic early to calm my nerves. It will be over so quickly and before you know it you will be in recovery. X

@FizzyOrange if it’s any consolation, for my port surgery I was wheeled in on a stretcher (from one part of the hospital, up two floors, to another part where the theatre was) and I found that that made me feel even more vulnerable and exposed - would have much preferred to walk in like a regular person!

@Babamamananarama agree, good analogy. Though it’s also struck me that we’re all walking around with that pistol to our backs, regardless of whether we have a cancer diagnosis (anyone could die at any moment through a freak accident, or else be walking around with some undiagnosed terminal disease); the difference is, we know what ours is. Which makes us more acutely aware of our vulnerability (admittedly not pleasant!) but it also gives us a fighting chance of stopping that pistol going off. (Apologies if that sounds annoyingly Pollyannaish! I’m in a good week now so inclined to think that everything is/will be fine; ask me again in a weeks time and I’ll probably be singing a different tune...!)