Cancer Support Thread 85 - Hoping for a positive 2023

[AGreatUsername]

Starting a new thread as the old one is almost full.

Welcome one and all, this is a thread for those with cancer and those who are awaiting tests for cancer. We offer support, a place to rant/vent/cry and ask questions without judgement. As always maybe we can do a quick who’s who at the start of this thread for newbies.

Heres hoping for a positive 2023 for us all.

Hope it's a good day for you @TopOfTheCliff. Glad the infection is on the run!

@PumpkinPastiez - that's what this forum is for, to share with people who get it. Top is right, as ever, living with the fear is what's so different to 'normal' life before diagnosis. I am lucky to have many amazing, supportive people in my life - but they tend to over-estimate the physical impact (for me at least) and underestimate the emotional stuff. So it's very helpful to share with people who get it.

@TopOfTheCliff - I am heading out for a short run into a beautiful blue sky day and will be thinking of you as I go.

I am in Sopwell house. A lovely treat from my friends. I can’t wait to walk in the gardens.

Thinking of you, @TopOfTheCliff. Pollyanna here, trying not to say anything too annoying. But it's not over till the fat lady sings and I don't hear her clearing her throat.
Must be depressing for you, in particular, that recovery from surgery and chemo second time around is taking longer than you hoped for. I don't post often because my circumstances are so different. (I'm 81. Little ones middle-aged now. No partner. Genuinely more worried about ending up stuck in a corner, losing not my religion but my mind, than a recurrence.)
But I know Tigger will bounce again. And that's a fact, not wishful thinking.

Everything crossed for you today @TopOfTheCliff

Bright blue skies here, have been out for a walk. I still need someone else to hold the dog's leads, frustrating but necessary.

Missed my counselling phone appointment by one ring - my amazing neighbour was hanging my washing out. Hopefully I can rebook.

@Top I've been on this path for 3 years now and have grown acclimatised to living with fear, that seems to be part of the membership of Cancerland. Scans and results appointments reboot the cold fear which is always lurking. Many people have said I'm brave but I've just shown up, it isn't as if there is a choice. I'm keeping everything crossed for you, really hope you get the news you're hoping for Xxx.

@TopOfTheCliff wishing you all the best for your appointment today. Hope the AB's get on top of the infection soon.
@dotty2 good for you on the run! Lovely blue skies make all the difference to motivation levels I find.
@LemonDrizzle10 sorry to hear you missed your first appt, but hopefully they will just rearrange for you. I hear your frustration with regards to the leads and look forward to the day I can drive and walk my dog again.

Just back from my 7 day post-op wound check. All going ok although megaboob is still a sight to behold.
Next step for me is the post-op results, but waiting for a date. Waiting really is so hard when you just want to know!

Even when the cancer is caught early the fear is awful once you get over the initial relief that disappears before you’ve left the hospital car park. I have my 6 monthly blood test on Sunday and now that I’m 27 months in my risk of recurrence has gone down to 10 percent but my fear hasn’t gone from 60% to 10%. In still way up there and the difference in how I feel between appts is like chalk and cheese. I had a knee replacement 3 weeks ago and my knee is doing well but the rest of me is wrung out. I didn’t know the recovery would be as difficult as it is even though I’m doing really well and working hard at recovery. Am currently thinking about rescheduling the appt as I’ve heard surgery can cause your numbers to rise and the thought of that is very much on my mind right now.

@KefaloniaKid - the run itself was tough. First time giving it a go on this chemo cycle and it was much harder than last time. But it was nice to be out in the sun. My sympathies on the results wait - it's a horrible time. I know it's bad, but your mega boob image is making me chortle. Take heart - I had a lumpectomy with a tumour below my areola and they just managed to save my nipple. Immediately after surgery, my boob looked exactly like an ice cream sundae that someone had taken a giant spoonful out of, while leaving the cherry perched precariously on top. Five months on, it's all settled down and smoothed out now.

I’m home now from the Clinic and processing what I was told. It’s good news, the nurses were delighted for me, BUT! (There’s always a but isn’t there)
Tumour all removed, no lymph node spread or invasion. There was a 3mm residual of active TNBC cancer cells and the margins were tight. At the bottom it was only 0.1mm clear of the tumour edge. Onwards to radiotherapy and a discussion about Capecitabine (which is oral chemotherapy). I had hoped to avoid any more chemotherapy but if that’s what it takes to get rid of the little bastard permanently that’s what I’ll do.
They also put some high tech whizzy silver dressings on the wounds and it all feels much more comfortable already. I am a bit deflated but overall I am on the right track. Trying to strike the right note with family now, giving “Good news but I’m not out of the woods yet” I suppose.
Thanks for all your good wishes. @Thymeout I understand exactly what you mean. I have already told my DC that if I get a recurrence in later life I will see it as a blessing to avoid the nursing home years. There are many things worse than cancer!
Keep going @dotty2 even if you have to slow down or shorten the run. There is a crazy BC and fitness FB group I belong to and the ladies there carry on weight lifting and rock climbing throughout. I’m sitting with a coffee and a custard slice now though. Getting slim and fit can wait a little longer.

@KefaloniaKid we will all be rooting for your results next. May the megaboob subside soon.

@TopOfTheCliff So glad that you had - on balance - good news and that they're on it!

Also very interested to hear about your silver dressings - that was tried on me as my wound is still trying to heal from September (!!!), but reverted to some sort of gel for the moment.

@dotty2 You've inspired me to pick up on my walking again - thank you.

@EachandEveryone Hope you're enjoying Sopwell House!

Bloody cancer.

Good news @TopOfTheCliff
Glad you're more comfortable.
Hope the custard slice was delicious

@TopOfTheCliff I’m glad you had (“buts” aside) good news 😊

Worryville has been filled with non-cancer worry. 9 month old had a febrile convulsion last week brought on out of nowhere by tonsillitis. I had never heard of it and was sure she was brain damaged or worse, she’s fine now thank goodness but I cannot get it out of my head. She was absolutely fine that morning, until she wasn’t. Then DH woke up with a weakness in one arm, inability to swallow and voice changes. Turns out he’s torn his carotid artery and is lucky he didn’t have a stroke! You couldn’t make it up. I don’t understand why all this shit keeps happening to us.

I went out and rage cycled 34 miles on Monday which made me feel a bit better at the time. Today I couldn’t do my 5k run without walking some of it and an absolute ton of my hair fell out. I can’t believe I’ve got to round 6 and now it decides to fall out, after I’ve done all the cold capping for hours. I’m just so tired of life being this hard even though I know it could be worse.

@TopOfTheCliff so pleased you've got good news but sorry to hear you have the 'buts' and have to have further treatment.

@WorryMcGee so sorry you're having such a tough time, it's one thing after another for you, poor you. My DD had a febrile convulsion brought on by a non-specific virus just before she was 2. My heart goes out to you, I thought she was dead and it has never left me (she's late twenties now). It's the speed with which the temperature rises rather than the reading itself which causes the fit. My information may be out of date now, but I was told to keep an eye on any signs of illness and give her Calpol as a precaution (it was practically a drink in our house). My DD didn't have a further convulsion even though she had really high temperatures with even a cold, one time at A&E it was 40.5! Sending hugs.

@TopOfTheCliff What a relief that it is mainly good news. I’m amazed at what you’ve already been through.

@WorryMcGee As my mum would say - you need to shut the door and lean on it to stop any more bad luck coming your way. What a stressful week but so glad your little one is ok and your husband is on the mend.

I’ve had a rollercoaster of a day. Wig shopping was shit and I ended up spending too much money on a thing now shoved in the back of my wardrobe. Then I had a call from the hospital saying my bloods were low and I needed to do another test otherwise no 2nd round of chemo tomorrow. I live bloody miles away but made it. I had an anxious time waiting for results but thankfully I just scraped past their neutrophils benchmark. My fear is if my bloods are low after just one round, how am I going to last another 7 cycles? Is there anything I can do to help boost them? Anything I can ask the doctors to prescribe?

Im not sure there is. I have my blood test next Wednesday and they decide Wednesday afternoon if they can start cycle 2 on Friday. Ive been taking a multi vitamin and vitamin D. I dont know I feel like I should start eating some red meat or something.

@@TopOfTheCliff , glad it’s in the main, good news.

@WorryMcGee , you’re having a tough time, I’m sorry. Dd (26) did the same thing at 18 months but never since. Hope DH is okay too.
Hair, I’ve had alopecia for fifty years now, on and off if it’s bothering you, Gunn hats are your friend, don’t let it get knotted, wash less frequently (NOT Daily) and try to manage with a baby brush. These are things I’ve found have helped slow hair loss down a little.

I have appointments next month, first x Ray since radiotherapy, haematology, and two weeks after a telephone appointment with the nurse specialist. Does anyone know if this is to report results from x Ray or just a general catch up?

@WorryMcGee that sounds awful I’m not surprised your hair fell out. When I saw children having febrile convulsions on the paediatric ward they always looked like they had died but an hour later they would be racing around again. Very nerve wracking. Maybe you should take up meditation and try to be Zen.
@Whattodotomorrow if it’s your white cells that are low you could try Manuka honey. If it’s the red ones you need iron so meat and green leafy vegetables.

I am getting my head round having more chemotherapy. I was assuming I would avoid it so planned a cycling trip to France. That seems unlikely now and I won’t be fit enough to sail solo until I’ve finished treatment I suspect. Sigh… but it could be much worse and I know I’m lucky the treatment is working even if it seems interminable.

@WorryMcGee one of my girls had a febrile convulsion when poorly. It lasted for ages. She was sitting next to me on the couch and I felt it but had no idea what it was. I was on the phone at the time and my friend was at the door minutes later such was the commotion. It was very scary. Over the course of the next few years she had more and we were given Valium (I think) to be inserted rectally as soon as one started in order to reduce the time it lasted. Hers could go on for a long time if left but stopped very quickly when sedated. It’s the spiking of the temp that causes them and we’d be on the ball with adol etc but they’d still happen. I hope you’re wee one is ok now and that your husband is also on the mend.

@Whattodotomorrow Filgrastim injections can be given to stimulate neutrophil/WBC production in your marrow. Ive had a few and while they work, they can also sometimes cause discomfort from bone pain. Also, if you have to inject yourself, thats not fun. But yes, there are potential solutions to the problem if its at risk of putting your chemo schedule off.

@TopOfTheCliff If you are moving to Cape, can you document if you get any hand/foot issues with all your activities? I imagine this one is on my roadmap and I am trying to get back into a lot more physical activity, and it would be great to have some guidance on potential challenges and solutions.

Currently stuck in the midst of serious ilipsoas/hip flexor rehab. Everything on my surgery/cancer side gave up in mid November and its literally been a major pain. But I got a really good PT and Im doing my exercises and coming along well, it would just be nice to be back to a base level of fitness and not limping/managing muscle fatigue and activity levels. Few more weeks and I should be through the worst of it, but Ive had to get my cane out again on occasion :(

Gosh - lots to catch up on here.

@gilead - sorry I can't help re your appointment. That must be very frustrating - I hate it when things don't get explained properly. It can make you feel very disempowered if you don't understand what's going on.

@Whattodotomorrow - I hope I haven't cursed you by sharing my disappointing wig experience. Before you give up on it, could you try it out on some friends whose opinion you trust? FWIW, I took my DDs to my hair dresser last night, and he was telling me I looked fantastic without hair and 'years younger'. Since he's cut my hair for the last 15 years, I'm not sure that's the right message...

@WorryMcGee - I'm sorry, that's all rubbish. Hope everything calms down a bit for you soon.

@TopOfTheCliff - that sounds like good news on the whole but not without its worries and challenges. Wishing you strength for the next steps.

Shed loads of work to do today with two deadlines coming at once. I hope I can summon the energy to power through.

@TopOfTheCliff
I suppose it depends on doses etc., but I've had capecitabine. My colo-rectal surgeon described it as being less brutal than other forms of chemo. Told me I wouldn't lose my hair, but it was cumulative. Was meant to have 6 x 3 weekly cycles, reduced to 4, because of covid. (The only way I could get bloods done was to visit the hospital which was like a WW1 field hospital at the time. An absolute plague-pit.) Onc said most benefit thru early cycles and there was only a 3-5% benefit to me anyway.
Minor neuropathy in finger tips. A bit more tired - but I was 78. No respite in week off from pill-taking and when I stopped taking them it took about 4 weeks to get back to normal.
It's generally regarded either as a 'belt and braces' short term or long-term maintenance chemo??
Anyway, shouldn't hold you back too much?

Thanks folks. @Thymeout it would be belt and braces for 6 or 8 rounds I guess. I have an appointment whizzed through for tomorrow with my former oncologist who is old school 73 and has a moustache and bow tie. You can picture him! He is lovely and I suspect I might go in and cry over him as he is kind. I want to go to France in April and I think my insurance might be buggered while I am on active treatment. It’s only three days so I will see what Doc Bow Tie thinks. I’m just frustrated that I started treatment two months before NICE approved pembrolizumab for early TNBC so I have missed out.

Meanwhile I have been mastering some very tricky Fairisle knitting techniques. There is a lovely lady on YouTube who explains how to knit a Steek and finish it in a soothing Hebridean voice. I may use her to get to sleep at night she is so reassuring. The more complicated the knitting the better for mindfulness I find!
Love to all.
Top