Cancer Support Thread #80 Newbies Welcome

[HumphreysCorner]

Welcome everyone old and new. Feel free to post a quick update to help new and old follow.

HC x

@Acinonyx2 the brachytherapy was quite something... a giant, radioactive womb tampon.

Just popping in briefly as first time driving since my op and hurting a bit.

@Lunificent I had chemo from January until May and only saw the oncologist a week after I finished my chemo x

@KitBot

@HumphreysCorner so this seems to be the norm then - that oncologists don't deal with patients.

@HumphreysCorner @Lunificent @Acinonyx2 They do if you pay for it. I only deal with my consultant oncologist and actually caused a stir today on the oncology assessment unit when he turned up to see me. My chemo went very wrong, swelling and redness in the port site but the needle was sited correctly.
The nurse I had at home sent him a text to say I was on my way and he came for a look. The young oncologist was surprised as was the nurse so it seems that is it not the norm. The young onc told me to ring them if I had any problems overnight, and he though it was hilarious that I had his boss’s mobile number.

I’m off back to genesis from now on, my port is obviously problematic and I need some extra care.

I also speak to him every cycle but that is usually a phone call.

My oncologist is always about just not for me. I’m based at 2 hospitals- one for EC and the other for Docetaxel and Phesgo. He is also based at those 2 hospitals amd I’ve never had an appointment when I haven’t seen him for a distance. One time, he was so busy, I didn’t even get one of his registrars. Someone had to come from another department so I guess had t seen my notes.
I guess the important thing is that cases are planned and reviewed at regular meetings, so I’m getting the treatment I need.

@FizzyOrange sudocream bought as suggested thanks. I have the prep and diet sheets now, not looking forward to it at all. Swinging between just not doing it and not knowing any problems, to doing it and finding out any potential problems. I am very much a 'head in the sand' kind of person

@TopOfTheCliff that boat trip sounds amazing, both in a good and bad way! I used to do a lot of boating when I was younger but havent for quite a while. DD2 rows with school and I am well jealous

@MrsPnut I hope your port settles down.

@HumphreysCorner wishing you well in your recovery from your op.

Apologies to those I have missed, still getting used to posting.

@Acinonyx2
Many thanks for the Youtube link. A vg way to start my day. Did you notice the prices? £5 for 10 cigars. You wouldn't even get 10 cigs for that now.

@Bloodybridget
Fingers crossed for you today.

Just had consultant appointment for result of my after op and 2 chemos scan. No residual disease !!! Although she did qualify in that the CT doesnt pick up much smaller than 1cm. Going onto a maintenance drug in a few weeks, two available and both can affect either my heart and b lood pressure, both of which arent good, or my kidneys, which also arent good I should actually be over the moon, considering this time last year I was deemed inoperable. but I feel curiously flat. Maybe it will sink in tomorrow !

@thereisonlyoneofme some good news then, but I can understand you feeling flat. It's not like everything's fine and dandy. However, I'm pleased to hear that the surgery and chemo have done what they should.
Apologies that I'm once again not going to catch up with everyone here, but as usual I do send good wishes and hopes for better times to everyone.
I just got the very good news that my bloods are all fine now, so I can carry on on niraparib. Thanks very much to everyone who sent encouraging messages and crossed their fingers, or whatever magic you wrought.

Hope everyone is well. Great to hear people's good news.

I'm so, so tired. I can just about make it to the toilet, and drink a bit of water, but can't muster the energy to get something to eat. I have to go for an injection later and am already panicking about getting myself dressed etc. (It's about 8 minutes' walk away).

Really lovely news to hear @Bloodybridget and @thereisonlyoneofme.

I too had good news yesterday. My mid-point MRI showed a near complete response to the treatment so far.

Was meant to see my surgeon last night to discuss my mastectomy but he’d been contacted by track and trace. How long (given a straightforward recovery and hopefully without a ‘gluegate’ scenario) do you think recovery will be? We have a holiday rental booked for October half term and I’m wondering whether I’d be good enough to travel 2 weeks after the op or is that being wildly optimistic?

@thereisonlyoneofme I felt flat after being told that as well. Hopefully you'll be able to see it as good news when it sinks in.

@bloodybridget that is excellent news - hope the niraparib works for you.

@TopOfTheCliff I always thought I'd fancy sailing but you're not selling it and I'm well used to wet and cold and muddy. Hope the biking goes more smoothly!

@HumphreysCorner fingers crossed recovery goes well

@MrsPnut hope that it has settled down now

@Lunificent I saw the oncologist once before starting chemo and have only had phone appointments since. I swapped onc to someone else who I've never met and while they are lovely, I do sometimes feel that when you meet people you're more invested in going the extra mile for them. Its good to know that they're behind the scenes planning the treatment but it's good to be known as a person rather than a case.

@Happy36 its so hard feeling that fatigued isn't it. Hope you start to recover soon.

@Acinonyx2 hope the radiation goes well

@KitBot I guess when you've been through that anything else must be a breeze

@NoOneWillReply good luck with the bowel prep. I found it the worst part of my moas surgery prep and taking laxido I still have to hold my nose and swill with mouthwash after not

Sorry if I've missed anyone, I know I'm new here but I do read and think of you all but I still struggle to retain information to comment. Its the same in conversation with people, I cannot accurately recall what was said. I'm not winning any arguments with dh
I have pre assessment for surgery on fri so have had to have a covid swab at the hospital this morning and now am isolating at home. In typical fashion the rain has stopped and its glorious but I can't go out for a walk so am planning to order some roses for my garden instead.

@jeanlannes- I’m interested to know about healing time too, for either a reconstruction with implants or a more complex operation. Might I not be able to drive for a couple of months?
@OrdinaryLife- it seems very typical then that it’s often the case that you don’t get to see your oncologist.
Question for anyone who has/had Phesgo. Is there a shirt flush at the end or not because it’s subcutaneous? I was sure I was meant to have a flush after it today but didn’t. The nurse hadn’t done one before because I’d been sent to a different treatment room to usual.

@Lunificent - I have Phesgo. Just the straight injection in my thigh every 3 weeks - nothing else.

@MrsPnut - hope the port settles. The nurse doing my bloods this week missed mine which hurt.

@Acinonyx2 - will follow your radiation with interest. I understand it makes you very tired? I am hoping that I can drive myself to the appointments.

@JeanLannes I drove to all my radiotherapy. It does zap you but you'll be ok to drive

Port is still swollen and sore/red. Oncologist isn't too bothered but I am having to wait for the interventional radiologists as they are all off tomorrow and my referral hadn't even been looked at when I called this morning. If I don't get an appointment for Friday, I am going to the private hospital if my favourite dr is working on Tuesday.

@JeanLannes @Lunificent I was able to walk around a few days post double breast surgery and full axial node clearance. I walked to my hairdresser for her to wash my hair a week post surgery. It's about 5m each way but I went out unsupervised.
I had stitches which dissolved so no glue gate for me and I wore a surgical bra for the first few weeks which helped.

Also I was really tired after about week 3 of radiotherapy but I had an hour's travel each way and had a taxi provided but I did drive myself on certain days.

@Bloodybridget Glad your bloods have settled and meds have restarted.

I must be lucky I've seen my oncologist before my chemo started and I'm seeing her again on Friday. Don't know if its because I'm in Scotland. I have discovered bowelbabe she was on women's hour this morning. She put into words how I feel most day.

A quick moviprep question. If I'm to take it 7 till 9 the night before, how long can I expect to be in the bathroom? And as I'm not a night owl, would bringing it forward an hour matter?

Secondly, I have the 2nd lot to take on the morning of the procedure, again between 7 and 9, am this time. My appointment is at 10 am, am I not still going to be on the toilet at 10? I have to drive myself there and back and am terrified I'm not going to make it

@JeanLannes I'm expecting to drive as well (and work). Not feeling much yet. A little bit sick and headachy which I didn't expect yet.

Glue gate didn't set in immediately - it was just rather itchy for the first week and I went walking about 48 hours after surgery. Then things went downhill quickly. So ordinarily you should be mobile but perhaps not too spritely - it's a difficult part to keep really still.

@MrsPnut I have found that it takes a lot to perturb an oncologist - everything seems to be trivial/irrelevant unless you have a fever or no neutrophils.

@Acinonyx2 - I am trying to get bits of work done at the moment and it’s hard going. Just feel fatigued and thinking takes effort!

Went into town today and bought some clothes as nothing fits for hot weather from last year. I look like a barrel! Most depressing and the thought of the effort to diet away the weight gain is just grim

That’s not meant to be as vain/trivial as it sounds given what everyone on this forum is going through…

@JeanLannes not vain or trivial at all. I have somewhat over-indulged in retail therapy and really need to reign that in. It really is hard to work though. I came off sick leave in June and I'm only doing some work but it's erratic - and then next few weeks are a bit busier than I would like.

@JeanLannes Not vain at all, I feel like a blobby barrel.

My chest is so swollen, painful and hot. It’s clear now that there was definitely extravasation of the chemo drugs into my tissues. I was back at oncology assessment this morning and my oncologist came to see me again (he’s the consultant on ward rounds this week which is why he is around).
I had an ultrasound and no pocket of fluid but general oedema and still waiting for the contrast dye flush but maybe the swelling needs to go down first.

@TopOfTheCliff is back from the cycle tour and sunburned and exhausted! I managed about 120 miles in three days with my friends and we stayed in a lovely hotel and ate lots! That’s what I like best about cycling. I don’t like the pain in my legs!
It’s a year this week since I started chemotherapy and I’ve still got four more doses of Herceptin but I am feeling positive about progress even if I still have some weight to lose. I’ve had lots of encouragement from my buddies who are amazed I am even out with them. They did have to wait for me on some of the hills though.
@Acinonyx2 I’m not sure I’m that keen on the boat this week let alone poor DH! Re the clothes buying - I am clearing out lots of old stuff to make room for new purchases once I am slim and lovely
@MrsPnut I’m so cross for you about the port. What’s the point in it if the staff can’t use it properly? Has the chemical leakage caused much damage?
@NoOneWillReply I found the effects of the moviprep took about three hours to go through but the second lot was just water coming out! Definitely take it earlier. You won’t be allowed to drive yourself home though if you have sedation.
@JeanLannes no problem driving to or from radiotherapy but get a parking permit from the unit.
Regards to all. I’m too tired to move right now but in a good healthy way!

@JeanLannes & @Lunificent I'm 5.5wks out from my single mastectomy & sentinel node biopsy (two nodes removed). For driving they say about 2-3weeks & rather vaguely my surgeon said it would be ok to drive when I felt I would be able to do an emergency stop without it hurting I would have driven after 2wks if I had to.

I think I would have been ok to go on holiday if it had been booked & I knew I wouldn't need to be very active. I was still feeling sore up to about 4wks and even now am uncomfortable after a few hours wearing a bra but that could differ individually. Have you read about seromas? That's a build up of fluid under the scar. I had it mildly & had it drained at my two follow-up appointments but small amounts can be re-absorbed by the body naturally. It can build up though & become uncomfortable, & even start leaking through a weak point on the scar so it might be worth considering how that would be treated if it arose when you were away. And if the scar become infected. I'm sure you could get treated at an A&E in the rare event you'd need to, as it's relatively straightforward medical stuff.

You might also have difficulty sleeping, if the op is on your normal sleeping side. If you were away you might not feel like being as active as you normally would be due to tiredness.

That is for just the mastectomy. I'd imagine it might be a bit more complex for immediate reconstruction but probably about the same for lumpectomy.