Cancer Support Thread #79 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

@Acinonyx2 Ah yes - it's Trastuzumab that I've been getting (we just call it Herceptin because it's less of a mouthful!). Also had four Perjeta infusions as I'm triple positive...

@HumphreysCorner I requested port access for my last MRI scan. They had to have an IV nurse come down specially from another floor, as the MRI techs don't do part access. They made a bit of a fuss about it and it's very clearly not the norm here, but they had no good reason not to, apart from the fact that they were worried about risk of infection. But we take that risk every time I have an infusion, so..??! Anyway, it is possible!

@backformore trastuzumab emtansine is Herceptin combined with emtansine - so different again. It's now being used instead of plain trastuzumab, i.e. Herceptin, for patients that didn't get a complete response to neoadjuvant chemo.

@backformore Perjeta is also for Her+ - it acts in combination with Herceptin.

@HumphreysCorner well, I definitely deteriorated yesterday evening after feeling surprisingly OK for a few hours after my EC - very nauseous but wasn’t sick. I had an early night and feel a bit better today. I’ve got steroids and anti-sickness tablets to take at home and just psyching myself up to give myself an injection of pegfilgrastim (sp?). All in all I’d say I’ve got away relatively lightly so far.

Hello, I did introduce myself a couple of weeks ago on here, and have been following you all. I don’t feel I have anything valuable to contribute to you all because I’m still in the “waiting stage”. My next appointment was next Wed (26th) but I got a phone call today to say this has been put back a week til Wed 2nd June.

I’m annoyed as I chased up last Friday that I hadn’t had a CT scan yet (had bone marrow biopsy done on Mon 10th May). Spoke to consultant’s secretary on Tues just gone (18th) and she told me that my consultant said the CT scan wasn’t required for next weeks appointment, the bloods and biopsy would be enough.

Now the change of heart today - CT scan IS now needed, but I haven’t received a date for it yet, hence me now not seeing consultant til a week later. Feeling really annoyed. I feel like my life is on hold.
My husband thinks my consultant has had bloods and biopsy results back and now wants CT scan to confirm or rule something out.

Anyway, apologies for the rambling. You are all going through worse than me so I am sorry. I hope you all have a good weekend, as can be. Sending hugs x

@MrsPnut bastarding neutropenic sepsis! I hope you are on the mend. I was kept in the hospital for almost 3 days, 1 of which was spent waiting for the results of COVID test - waiting on it was quite nice, actually, as I was in a room of my own on a geriatric ward! I did get moved to oncology afterwards but it did make me chuckle - very peaceful it was, too (there were no spare rooms anywhere at midnight when I was admitted).

@Bloodybridget You WILL get to the Highlands, I know you will. My in laws live there and we are finally going to see them in July. Hopefully with a week of them looking after DS9. Since the pandemic I don’t know what it means to be just the two of us (DH and me) anymore.

@TopOfTheCliff Fingers crossed for your biopsy results.

I finally had it confirmed by my consultant that the bone scan was all OK. Went to the gym for the first time last Sunday. And did my first run since June 2020. All fitness out of the window. Am now feeling sore everywhere.

This cancer has made me looking so old, haggard and all over the place. I know I shouldn’t complain and feel awful for doing so but I have aged by decades since last July. I am having my hair cut next Friday. Am tempted to dye it before into my pre-cancer shade. I thought I would keep my hair as it has grown now, mostly grey, but it just reminds me of chemo times too much. Plus I am not rocking grey at all. I want to think I look like Keanu Reeves’s girlfriend (can’t remember her name now, she is a sculptress) but all I can see in the mirror is a shrivelled husk of my former self.

@Llioed waiting is the worst as that’s when our minds go into murky places. Keeping my fingers crossed for some good news. Meanwhile, pull a chair and make yourself comfortable here - it’s a lovely place in the face of darkness that is bloody cancer.

Sending hugs (are they allowed on MN?) and wishing everyone as nausea free weekend as possible.

@Llioed the waiting really is the worst. It's horrible. Try not to dwell too much on the whys and wherefores. Your consultant wants as much information as possible to give you the most accurate diagnosis and plan.
I threw myself into work while waiting for my diagnosis and then again in the wait between diagnosis and treatment. I tried to make sure my time was full so I couldn't start that horrible dark spiral into what if.
Feel free to come on and moan and rant. We've all been where you are now. We know. x

Thank you so much for your kind words, I appreciate that. I will just have to keep waiting 😔 I can understand that my consultant wants all the info he can get - my head knows that (logically) but my heart doesn’t, if that makes sense?

From what I can see on this thread it’s a place you can come to and be completely honest about how you are feeling and someone will always be there to help you back up. That’s what I love about this thread, from what I have seen so far. You are all incredibly supportive to one another.
Take care x

@Bloodybridget what I meant to say you WILL get to see the Highlands when you have finished your treatment and you feel stronger. I do get you completely, though. I don’t know what I would have done had I been living in a rural area. As much as I dream about it, I don’t think I could (not yet, anyway) - I have been really lucky to be living 1.2 miles (according to Google Maps) from the hospital that has got oncology dept., including the breast clinic.

@Llioed it’s good to be signed to an oncologist who is thorough, even though it may seem scary. My oncologist wanted to do another bone scan after I had finished my treatment, to make sure an old rib injury is still what “it says on the tin” - just an old injury. As scary as it was at the time (you can imagine my mind playing up), it was better than her just dismissing it as such and then finding out it WAS something that was significant.

And yes, it’s therapeutic to be here, I have offloaded some things I haven’t mentioned to anyone in RL. Because as much as I have the support of family & friends, sometimes the only ones who understand deep down what I am going through and how I am feeling are people in the same stinking cancer boat as myself.

@Llioed you're in the worst stage at the moment where you don't know exactly what you're dealing with and it's horrible. Once you've had your appointment and know what the plan is, you will feel loads better. Having anything postponed feels like a real setback and I used to go over all the 'what ifs' all the time. At least this way, your consultant will have all the information and it may also save you more worrying and waiting in the long run. Unload all you need to, we are all here for you .

@balkanscot so true, only those in the same situation can truly understand. I always dread my chemo unit days but once I'm there get to chat with so many other patients and find it really helpful.

@llioed waiting for appointments and being told things have to be rescheduled is very stressful, even if it's for a good reason. Hope things go more smoothly for you after this.
@Topofthecliff sorry you have been having hard times. Were the cakes nice?
Thanks for all the kind messages about Scotland. @Balkanscot I'm very keen to get to the Highlands, maybe next year!
@MrsPnut hope you're enjoying a good rest in your own bed now.
Warm wishes to all.

Morning, I had a nap yesterday afternoon and a great nights sleep last night. My temp was a bit high when I got home yesterday but I think it was stress and pain from my back.

All back to normal now and my discharge letter asks my GP to repeat bloods next week. It also has the doom and gloom that I left against medical advice.

@Llioed Welcome back, everyone else is right about the waiting being the worst part. Your appointment may have been moved because your case went to MDT and they asked why no CT scan. Almost all cancer treatment is decided at the multi disciplinary team so that every specialty has input. Which is why when my histology results were discussed at MDT and they knew I could see the oncologist privately, it only took one day to refer me and book and appointment. He didn’t need to see the notes because he had been at the MDT.

Bridget, I do hope you get to Scotland soon. I’d love to do the NC500 one day. I have been up to Caithness once for work but otherwise it has only been Glasgow or Edinburgh for our forays north of the border.
@TopOfTheCliff fingers crossed for your results.

My lumpectomy has been rescheduled for Tuesday. Should all be over by now but my heart condition meant I spent a few unplanned days in hospital. I am terrified. I keep thinking I'm not going to wake up. In fact I feel like I know I'm not. I have a slipped disk in my jaw that makes opening my mouth difficult and I'm pouring all my anxiety into that meaning they won't be able to maintain my airway. How do you manage to be brave before surgery? I feel like I'm never going to see my kids again.

@MrsPnut glad you are back home and more comfortable.

@Littlestelephant on some level you must know that your anxiety is exaggerated and you will actually wake up from surgery. I also had an exaggerated fear of surgery and when I come to really frightening events like that I just make my mind go empty and just try to feel nothing at all about anything - as though I've exhausted my capacity for emotion. Just cease all unnecessary thinking of any kind - especially related to surgery. I become quite fatalistic at this point - because it IS going to happen whether I am terrified or not.

Once the tube is in your airway it's in - that's it. Even if it came out by some magical process - you'd still be breathing.

@Littlestelephant Before I went for my surgery, I emailed my head of HR at work to tell him that my death in service benefit was to go to DH if anything happened to me. He replied to tell me that he'd written it down but that he's sure I would be dancing the funky chicken at my 90th birthday. It was part of me making sure that everything was in order just in case but the odds are that it will go smoothly and you will be home the same or next day.
Most of us posting on this thread have had surgery, the surgeons are experienced as are the anaesthetists. They do this all the time so you won't be the first or the last with difficulty opening your jaw that they have seen.
You do meet your anaesthetist in the morning of your surgery during your booking in along with seeing the surgeon (mine drew all over my chest in marker pen) and having a nurse assessment so you can tell them then about all your worries and they can reassure you.

Before surgery I instructed dh that in the event of my sad demise he was to burn unopened a zipped case of papers under my desk I think he may have rolled his eyes...

Thanks both.

I know I'm being irrational. I think I'm just "stuck" on thinking the 1 in 100,000 who it does go wrong for probably didn't think it would happen to them either.

I've also been preparing in case I die. I've written a letter to my children and DP. And have also emailed my boss about the Death in Service benefit @MrsPnut. I think everyone thinks I've lost my mind.

Hi, I'm on my post-chemo pre-surgery break in Devon. Healthy eating suspended and drinking briefly re-instated Sending everyone who's feeling anxious, poorly or low some relaxing feelgood happy vibes straight from the hot tub

@HauntedDishcloth that is so great to read! Have a fantastic time. I'm dying to jump in the hot tub but I need my foof to be fully healed first. I'm not sure I want a chlorinated fanjo 😆
Have a ball, keep us updated on your bacchanalian excesses 👍🏻

So shitty news from my end.
By the time they admitted me for my 5th chemo I was really symptomatic and showing all the signs of pressure on my vena cava again. My consultant took one look at me and sent me off for a CT scan.
Which revealed that my lymphoma has grown back in the three weeks since my last CT and so effectively my chemo isn't working and it's chemo resistant and essentially relapsing before I've even finished the course. I've also had a blast of radiotherapy to try it disintegrate my tumour and get on top of it and will have another blast on Monday.

So they've replanned and put me on stronger, second line 'salvage' chemo for my 5th and 6th round but ultimately I'm now facing a stem cell transplant if my body responds to this chemo and it is sent into remission. If it doesn't, then my treatment will be very new CAR-T therapy (where my T cells are harvested, sent to the US, given special cancer killing instructions and reintroduced to my body)

All of these options is going to leave me in very intensive treatments and recovery for months to come. I'd just got to the point when I was mentally prepping for post-chemo life and counting down the 28 days til end of treatment so this is a massive hammer blow. It's also shortened my odds massively, though I haven't asked by how much as I don't think a) they'll be able to give me a straight answer or b) I'm in a place to hear or absorb it.

I'm really really sad and frightened, and feeling like the last three months of intense chemo have done nothing at all to progress my recovery bar keeping me alive to this point. It's really hard not being able to see DH in the flesh to absorb this news together.
Hopefully I'll be out Monday.

@Babamamananarama - I am so so sorry to hear your news. That is indeed crap particularly as you are by yourself. My hospital has a policy of allowing partners for results. Would they not allow DH to visit you at all? It sounds like they do have other treatment options for you - and have faith in these - even though it’s not what you wanted. Sending a very big hug through the ether to you x.

I also wanted to thank everyone for their condolences about DF. He passed away gently in the early hours of yesterday morning. I am glad we managed to keep him at home and he is at peace now.

Oh @Babamamananarama I am so sorry to hear your news. It is so unfair - chemo is horrendous but at least you feel you are doing it to get rid of the cancer. The fact that it isn't working must be so upsetting. It absolutely sucks. Thinking of you and hoping you get to see your DH v soon. xx

@B**@Babamamananarama - I'm sorry to read your update and I hope you get to see your DH soon. Much Love x