Cancer support thread #77 - newbies welcome

[InOtterNews]

I couldn't see new thread so here we go...

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)

Just read through the last couple of pages. Nice to see you here @citybumpkin!
I have been quiet for a while but still thinking of you all, haven't quite got it in me to respond to individual posts, but I can see the thread is living up to its reputation for generous, thoughtful and helpful support. You really are a marvellous bunch - including those who are terrified, struggling and raging.
Sending so much love and good wishes to everyone.

Ladies. I've escaped. First time since diagnosis I've been anywhere other than hospital or local park. My friends picked me up and drove into London and parked up by Tower Bridge and we went for a glorious walk. They came loaded with a thermos of hot chocolate, marshmallows and mince pies. It was so good to get out. I had cried myself to sleep last night by listing all the things I'm feeling scared or anxious about so this was just what I needed. It's was horrible to see London so empty though. But good in a post-transplant-avoiding-people kind of way.

You know when you're in the thick of chemo, you suddenly feel good for a couple of days, and you think, "hey, let's just paint the house, it's looking a bit drab!" ... and then on day 2 of painting, you rather spectacularly run out of energy and spend most of the day sitting on the floor pointing at bits of wall that DH didn't paint to quite the right standard...

Last chemo tomorrow. I'm unexpectedly nervous, even though I know exactly what it entails and I am glad to get it over and done with!

Sending you all lots of love...

Hi everyone, lovely hearing from you all. My mum and dad are so low and fear the worst, 79 and 80, I need positive thoughts not tales of so and so up the road who has been through this and that.

Larry seems to have got bigger, about the size of a tennis ball now. Just want to crack on with treatment.

Till tomorrow.

@HumphreysCorner The older generation often have a very different view because things really have changed SO much. I worked in cancer research over 30 years ago and things (understanding of processes, treatments) have changed radically since then.

Speaking of hearing about so and so. A friend sent me a book for Xmas about a teenage girl whose mother from breast cancer. Dear god. I've hidden it from dd15 and I won't be reading that any time soon. She truly meant well but what the hell??

Larry is about to get blasted to hell He's going head to head with the Terminator. 'Hasta la vista, baby.'

@KentishMama Oh I totally hear you. Fantastic to hear this is your last blast! I'm just starting to get a view of The End - long way off but starting to feel I'm clawing my way there. @citybumpkin and also done - that's the goalpost. cough is still driving me batshit.

@Bloodybridget hope you are getting some peace and rest.

@InOtterNews Love to picture you celebrating along the Thames

@Acinonyx2 Thank you for helping me feel brighter today . I am shocked at the book too.

@InOtterNews how lovely of your friends.

@KentishMama lots of luck today, last one eh?

My boss messaged earlier to see how I was then hasn't replied since. I'm dreading losing my job as I love it so much.

Laters 👋

@InOtterNews lovely pic! I walk past there every hospital trip (Guy's), it's a lovely spot!

@KentishMama hope today has gone well. Last one is bound to be met with some trepidation imo but now every day will be one step further away from it.

@HumphreysCorner hope your boss will be supportive. I believe everyone with cancer is protected under the equalities act - my work have been great but I still find it comforting to know those protections exist xx

I was high on steroids for Christmas and we had a lovely quiet time here. Finding the news re hospitals quite stressful and thinking we will keep the kids off school for at least the first couple of weeks of Jan to keep me safe(r) for a bit longer.

Just had a call from the radiologist who wants to scan my lymph nodes as the MRI showed swelling so might have to have another biopsy which I'm dreading as the first one got so badly infected. Going tomorrow afternoon. They were clear when I had the first biopsy.

@HumphreysCorner I also had a biopsy that went badly so I totally understand how you feel. They are generally pretty straight forward though - so you've had your dollop of biospy-bad-luck.

Wrt lymph nodes - knowledge is power then they can whip them out. I know it's not news you really want to hear - I have several dodgy nodes myself.

@Lubballoo I would not be sorry to hear that schools are closing - despite dd being yr 11. Cases around us have rocketed.

Hi all.

Hope everyone's treatment is going well and everyone is feeling at least a bit human today?

Just checking in. My op is a week on Monday and I'm trying to distract myself by shopping for nighties. Not really doing much for me!

List of hospital must haves would be welcome. I think I'm going to be in 3 nights. We're tier 4 so no visitors but I'm trying to think of all the reading and tv I'll catch up on. The hospital is a 70 mile round trip so it's also good that DH doesn't have to stress trying to get here.

I'm self employed and trying to get as much work as possible in beforehand. That's keeping me distracted as well. The irony of cancelling my sickness policy last year is not lost on me.

@HumphreysCorner I second all that Acinonyx2 says about biopsies and nodes. Will be thinking of you tomorrow x

@Acinonyx2 yes we know several families from school where an adult has recently tested positive, most likely via their children. I am really loathed to keep the kids home, they get so much out of school and keeping them occupied is going to be hard work with me on chemo and DH working. But I think needs probably must.
I completely agree with what you were saying about positivity being a bargain with those around us btw. I actually think it might be a bargain I'm making with myself too, to be honest!

@TopOfTheCliff glad to hear the surgery went ok! How are you feeling now?

@gillmoregirl how was your first chemo? With any luck you're feeling a bit more yourself again by now.

@Noidea2114 I know what you mean about it all feeling as if it's happening to someone else. I had my diagnosis in early December and I'm only now starting to feel that I can "own" it, if that makes sense. Go easy on yourself.

@AlbertCampion sympathies! That sounds like stress you absolutely didn't need. Been there, and it's crappy.

@Acinonyx2 and @Bloodybridget, hope you're both feeling better a week on from chemo. I had my first one one last Monday, too, and thankfully it hasn't been too bad. I was tired and sore that night, and the day-after jab left me feeling very achey the next day, but I took the anti-nausea pills at the first signs of wooziness and that's kept any sick feeling at bay. Interested to hear if others feel their reactions get worse with each treatment...?

I actually managed to get out for a bit of cross-country skiing with my DD8 on Christmas Day, which did wonders for morale (the skis were our xmas present, and we had 10cm here in Toronto on Christmas Day, so it all worked out beautifully). Boxing Day I felt completely flat, though. Mood was through the floor (could have been PMS). The next two days I felt great. Today I've had no physical symptoms, just feeling a bit wobbly again mentally. Sigh!

@HumphreysCorner I'd echo what @Lubballoo says about feeling so much better once treatment starts. Glad to hear your team is taking an aggressive approach - that's what happened with me, too. It was so overwhelming to begin with, but I'm glad now that it's started.

And yes to other people's negative reactions! I'm lucky in a sense because my Dad had mouth/throat cancer when he was 70, went through treatment, and came out the other side cancer-free...so my parents are actually inclined to take a very positive attitude with my diagnosis. But the messages from some people which seem to veer towards condolences really bring me down. I hate feeling like a patient, or a martyr, or a victim - or thinking of people seeing me this way - even though I'm not a brave warrior, either. So much is in the power of the c-word, I believe. It still has a huge psychological hold on people.

My next steps are port insertion on Jan 6, then chemo number 2 on Jan 11. Any positive stories about how easy the port surgery is would be hugely appreciated! And also what it was like to use it for chemo/bloods the first time. I think I was traumatised by the flurry of biopsies and scans and tests and clip placement in diagnosis week (10 appointments in 6 days) which is why I'm dreading the port being put in. I know it's a tiny thing in the grand scheme of treatment, but it's my mental weak spot, being jabbed and "worked on"... :(

@backformore I have a picc line rather than a port but it is so much better than all the fiddling with getting cannulas sorted. It was no problem getting it fitted. I'd have preferred a port though as ot is a hassle keeping the picc line dry when washing.

Does anyone know how soon after chemo ends they're likely to remove the picc line? I'm hoping they'll do it on the day but I guess they might suggest leaving it in for the follow up MRI or even surgery?

Greetings all. @KentishMama have you been spying on me?

I’m fed up. All was going nicely. I had been good as gold and got through a week of inactivity post lumpectomy and lymph node clearance. I ventured to the kitchen to do three days of washing up with my other arm. Imagine my astonishment to find 26 tea spoons in the sink. I’ve never seen most of them before. Either they are breeding or DH has a secret vice I hadn’t suspected. Afterwards my armpit swelled up and I have a tennis ball fluid swelling stuck there. I am back in bed trying to do nothing again. Nurse when consulted said just put up with it for now.
It’s so frustrating !
Looking towards the New Year now. Cheers all!

@Lubballoo my PICC line came out after my last dose of chemotherapy. It only took 'a few seconds and it didn’t hurt.

@TopOfTheCliff thank you that's good to know. I am getting a bit fed up if showering and bathing with one arm held in the air! All being well I have another 3 weeks and 2 days til last chemo... not that I'm counting.. .
Sorry to hear about the tennis ball. I'd take this as a clear sign that there should be no more washing up for you! But really hope you can get back to more interesting activities ASAP now x

@seizethecuttlefish not an exhaustive list but for me I made sure I had: ear plugs, hand/face cream, headphones (I was in a private room 99% of time but they were useful the one night I spent in a bay) /phone with Netflix etc (laptop for longer stays). Twice as much underwear as you think. Cardigan/soft scarf or something to cover your shoulders/arms in bed.

I'm sorry I can't remember what your op is so my list might not be that helpful.

Thanks @InOtterNews. Never thought or the scarf cardi! I might be buying more underwear. Good plan. I think I'm in a private room but first day in high dependency. I'm having my kidney removed and the timescales for the stay are everything from overnight to a week.

I've had my op this morning. Fortunately I was the first in theatre. Boob is ok but under my armpit is very sore, even taking painkillers.
They had trouble putting the cannula in, first one fell out. 3rd attempt was successful got a lovely set of brusies. And of course the sexy stockings.
All the staff were so kind and friendly.
Came home about 3pm. I feel very tired and tearful. Cried going in as at that point I was frightened. Woke up crying. DH has looked after me
so well. It helped to come home to a lovely tidy house. Bought me a plant, a large box of chocolates and a cake. So cried again.
Everything I pass is blue and under my eyes are a blue.

Very late to the introductions this thread! Diagnosed with her+ breast cancer in oct 2019; had 3 rounds of Ec, then 3 rounds of docetaxel plus herceptin plus perjita, followed by reduction mammoplasty with sentinel node clearance, then radiotherapy, with herceptin every 3 weeks. Tried cold capping during chemo, but it didn't work for me. Abandoning the cold cap did mean I could bear to have the cold mitts and boots when having docetaxel - which meant I didn't get any neuropathy in my hands or feet. Don't think I could have managed cold capping with the mitts and boots - was very unpleasant as it was! Hard to believe that it's my final herceptin on 8th January! Had my 1 year scans last week and am cancer free, and the end of active treatment is finally in sight - just waiting for surgery to balance me up, as I'm currently a g cup on one side, and a c cup on the other!

seizethecuttlefish - extension cable is useful for hospital. Plugs are always in an awkward position, and charger cables for phones,etc are always short, so multi plug extension cable is very useful! Also, button up pyjamas or night shirt if you have a port.

backformore - I had a port fitted the day before my 2nd round of chemo. Only hurts for a second or two when it's inserted - I really dreaded having one, but was told my veins wouldn't cope with cannulas on a regular basis - hard to find and kept collapsing. Best decision I made - made blood tests and chemo so much less stressful (for everyone concerned! ). Noone warned me, but for a couple of days after the insertion I had to literally roll out of bed as it was incredibly painful trying to sit up - because you tense your neck when you sit up from lying down. That was the only pain/downside to having the port.

Hope everyone is able to enjoy the Christmas break as much as treatment and side effects allow.

@Zorgothslugofdoom thanks for the reassurance, and the tip about rolling out of bed! I’ll have a few days to recover before 2nd chemo (I specifically asked for this - doc said some people have the port fitted on the same day as treatment, but that was more than I could bear thinking about!)

We’re you fully awake/aware during the procedure? I’ve heard people say they can’t remember it, and my DH has to be there to take me home, so presumably I’ll be given something... but my oncologist made it sound as if it was only a local anaesthetic. Were there multiple shots involved, or gas, or..?

@Lubballoo good point about hassle with pic (plus I have a 2 year old who climbs on me all the time, which I guess wouldn’t be ideal?).

Just popping on to say v briefly that I have a PICC and I honestly don't notice it day to day at all. You can get PICC covers online so you don't worry about snagging it, and I got a waterproof PICC cover on Amazon which keeps it completely dry in the shower.

backformore I just had local anaesthetic for the port fitting. I took about 45 minutes from walking into walking out - most of that was waiting for the local anaesthetic to numb me up!

I freaked out a bit before mine, as I thought I would have some form of sedation, which I think they do at some hospitals. I had mine done at the Christie and they don't do it routinely - I think if you don't have sedation they can see more patients, as you don't need any monitoring afterwards. I had mine done, they put a covering over it, I got dressed and went straight home. Like I said - about 45 minutes in total! It's unpleasant but it doesn't really hurt - maybe a couple of seconds when they put it in, but it was over really quickly! I am a complete wet lettuce, and it honestly was ok. I had a nurse holding my hand and distracting me, which really helped! Hope it goes ok for you!

@backformore I had my port fitted under sedation. I think it's sometimes also called twilight sleep? That might be what your hospital does. I remember walking into the OR, getting a cannula for the sedation, and then being woken again in the OR twenty minutes later. They then kept me in a bay for a while and forced me to eat and drink something, and then I was allowed to go. The waiting around was the worst part as I was last on the list. I took paracetamol for around 24h after the fitting, and I had to get used to not knocking the port accidentally. Other than that, it's been a godsend. :)

Final chemo is done and I feel like a weight has been lifted off my shoulders, even though I still have radiotherapy to do. And that's starting on Monday! They accidentally scheduled it a bit close to chemo, but I decided to roll with it so I'm done with treatments sooner!

Congratulations to those who have finished chemo or other treatments, and wishing good recoveries for people who have just had surgery or invasive procedures.
I think some of you have had counselling to help cope with dg etc - did you feel it was worth it? I am really struggling with how I'm feeling these days, everything seems so hard, and think perhaps just having a space to talk to someone who has no connection could be useful. I'm not looking for a solution and certainly not long term "therapy".