Cancer Support thread 86 - Stay Positive

[LemonDrizzle10]

New thread as other one nearly full.

@WorryMcGee you are amazing! Give yourself a big pat on the back and I hope by now you have had a nice sandwich and are feeling better. Quite honestly nobody except you will care about the lack of a hat, people are so self absorbed they won’t have noticed. What is your plan for the next trip? Train uphill and ride home downhill? I would have to allow at least 3 hours for a 32 mile ride. I think you are brilliant. My hair is now sticking up in mad tufts!
I have now had two doses of Cape and am sitting at home nervously waiting for something bad to happen. I keep snapping at DH when he asks what our plans are because I daren’t make any. I counted I have to take 1120 tablets and so far I have had 10. One good thing was the lovely receptionist at my GP surgery booked my next two blood tests and was very kind. It’s the first thing I’ve asked them for in three years.

Thank you @Scandimandy and @TopOfTheCliff. I’m still hiding upstairs as the guy is still in the house and all my scarves/hats are downstairs ☹️ it’s tufty at the front and back but I’m still bald on top and I’m so scared it won’t grow back. It’s been 7 weeks today, surely I shouldn’t still be bald on the top? I should have some hair right? And the neighbours will have noticed because on my road they bloody notice everything so I’ll get a comment now about how lovely it is that my hair is growing back (when it isn’t, as far as I’m concerned)

Tomorrow is definitely the train both ways. It’s such a horrible route, I can’t do it again. It’ll be just as hilly going the other way - I’ve attached the elevation from Strava 😬 nothing is flat around here but this almost killed me off. It took me 3 hours 5.

@WorryMcGee please don’t worry. And I’m in awe of your cycling.
has anyone decided to stop taking ai meds( anastrozole/ letrozole etc) post breast cancer? I had lumpectomy/ node clearance/ chemo/ radio and now on letrozole for almost a year having tried anastrozole/ tamoxifen but am experiencing major issues with dryness and am trying every cream / lotion known to (wo)man but still experiencing a lot of pain / discomfort.
got a review with onc soon.
Thanks all.

@WorryMcGee I think you should put a pair of pants on your head and walk confidently down to the kitchen to make your lunch. Or phone DH and tell him to bring it up.

@thesandwich my oncologist said I could use vaginal oestrogen with tamoxifen if I wanted as it blocks the receptors in the rest of the body. I haven’t needed it so far as my nether regions are an uninhabited wilderness currently.

@TopOfTheCliff well that’s made me laugh at least 🥲

@TopOfTheCliff excellent suggestions for @WorryMcGee and thank you for your advice. One onc did very reluctantly swap me from anastrozole to tamoxifen and prescribed a vagifem short course which helped massively …. Current onc swapped back to letrozole and said I could use vagifem in extremes but all the info seems to indicate that it wouldn’t work as it is an aromatise inhibitor? And raised risks of recurrence?

An update I didnt anticipate. Came home from hospital yesterday afternoon to a dishwasher in the kitchen with a bow and a 'sorry' note. It's his job to fill and empty this!!

I am feeling absolutely shocking today, I've got the worst cold I've ever had, constant sneeze fest and just generally feeling shocking. I have had some absolutely shocking night sweats, waking up completely soaked.

Vile!

Hope
Everyone is okay

I've had my last chemo today I have a 6 week break from treatment before starting Niraparib for onwards and upwards ( hopefully).

@FangedFrisbee - that is a lovely sorry present. Much better than flowers. I am pleased to discover he isn't a complete arse and you don't need to LTB. Provided he does actually empty it. (Though I warn you, my DH and I rarely argue but one of our fundamental areas of incompatibility is to do with different dishwasher loading techniques - I grumble at him, he lets it wash over him and carries on doing it the WRONG WAY.)

@WorryMcGee - what a nightmare. I hope you have finally had something to eat and can have a restful evening. Or as restful as possible with your little one.

2 RT treatments down for me - driving fine yesterday, but couldn't park today and had a stressful 20 mins driving round all the hospital car parks to no avail (with lots of other stressed patients doing the same). I took my hat off to emphasise my bald and cancery state and one of the parking attendants let me hover in a car park entrance for the next free spot.

The RT itself was a bit unpleasant - I hadn't anticipated how much I would be manhandled and shuffled around and didn't enjoy that. But what I've really hated about the whole thing is the fact I didn't find out it was starting this week until last Friday and didn't get the full schedule of appointments until yesterday. They are at totally random times - different every single day - and I've had to do a whole load of diary juggling with work, kids and other medical appointments to make them all work. I know how overstretched everyone is, but giving someone 20 days of appointments with literally zero notice and assuming you will just be able to make them all work does seem a bit rubbish. And I got home yesterday to DD1 having an A-level-stress-related meltdown and had to summon all my reserves of patience to give her the support she needs. I feel so bad I'm not always 100% available for my DDs emotionally, but find it very draining to manage even 50% some days. Sigh. Rant over.

@dotty2 I sympathise. One day I was limping slowly and baldly towards the RT entrance when a parking guy spotted me, showed me three illegal spaces I could use and a secret side entrance to the department. He even offered to carry me!

@dotty2 I’m with you on the random appointments thing! After my 30 min parking fiasco yesterday I walked in all flustered and they handed me a sheet of A4 paper with such a random list of times on, it’s going to be such a pain. I don’t understand why you can’t have the same time every day if you’re on the same machine every day 🤔 also I don’t understand why you have to find out on the day of your first appointment! Aaargh stamps foot

@thesandwich i tried Anastrozole for 3 months and had bad side effects and then tried tamoxifen. I also was unable to tolerate tamoxifen because it made me feel so ill. I was determined to take them to increase my survival but I just couldn’t live my life with pain, nausea, anxiety, fatigue and weight loss. I felt suicidal. Sadly I had to admit defeat

Thank you so much @JJlL2013 that's really useful.

They've gone through the side effects with me ad nauseum (hah!) but I know it's different for everything.

Looks like I might finally be getting through my tbr pile!

@worrymcgee sorry you've had a rough day. Hope the EDF man has buggered off now and you're having a nice relaxing evening.

And I'm glad Fang's husband has seen the light! (My tagging is a mess, sorry!). I know from being the other side of the fence the strain it puts on relationships and I'm very glad that he's calmed down and realised he was being out of order, rather than being an actual arsehole iykwim!

@Mycatispretty thank you for your comments- I really appreciate it. I did not have any idea this part of cancer would be so hard- got through all the other bits, but am floored by this. It’s bloody tough.
much sympathy to those dealing with radio- it’s stuff like the random times, parking hassles, delays and relentless day after day of it that makes it all so much tougher. 🌺

Can anyone help? I shared the mountain lion analogy on fb and some friends have reshared it. I am now panicking I have breached copyright, does anyone know if this is the case? I can’t afford to pay a copyright suit😳

Feel bad as it was me who originally asked for the link. I think that whoever wrote this would be happy for it to be shared, as it was presumably done to show the ongoing battle that cancer patients face.

I'll happily contribute to any copyright fees you owe!

@ajandjjmum , no don’t feel bad,it was down to me! I’ve deleted it now, and actually I’m sure it’s fine, I think it’s just a bit of displacement fear as I have my results from my not quite one year on biopsy tomorrow (hopefully, if they are back). I’m sure you are right, it even says in the link that it’s a much shared piece, but I just am feeling the fear of everything just now!

@Podgedodge that mountain lion story is well shared all over the place. You will be fine. And knowing the biopsy results whatever they are will ease the fear. Hopefully all okay but if they are not your team will have a plan.

@Lisdeflores hooray for a six week pause. Enjoy the spring and get strong and happy before the next hurdle. I have loved my month off treatment. I am now sitting nervously waiting for side effects to appear from Capecitabine. Nothing yet…

Top

I had an mri tonight (boobs) I’ve had one before but it was head and neck last time so I wandered in the room tonight thinking it would be the same and how wrong could I have been. I found it horrific and my whole body was clenched the entire time I was in there, I found it so suffocating, the only thing that stopped me from squeezing the emergency thing was the thought that they’d have to start again. I can put up with the noise but face down into darkness just put me over the edge and I’ve been tearful ever since. Please tell me you don’t have to have many of them going forward…

@Silkierabbit , I’m so sorry to hear all that. It must be frightening for you and him.

@Scandimandy I’m sorry the mri was tough. Maybe you could ask your BCN if you are likely to need more?

Thanks @TopOfTheCliff I plan to enjoy my break I want to get back into running I have missed it but just not had the energy or the will power. My first stop today is to book a hair appt. I didn't lose my hair this time round but I wasn't going to spend money on haircuts just in case it fell out. The result is this wild tangle on my head a bit like an old English sheepdog!
I hope your treatment continues to be kind to you.x

@Scandimandy i absolutely hated my first breast MRI but the second one I had at the end of my first type of chemo was much more bearable because I knew what to expect. If you need another can you ask to have music?

Whoa @Silkierabbit that is serious damage. DS doesn’t need words does he?
I’m a bit perplexed about my new treatment. The nurse had no information about diet on Capecitabine. My oncologist told me not to take extra vitamins. The literature suggests side effects are worse in patients with a high serum folate level and some say you should avoid foods containing folic acid. Most of my diet is on the list. Green leafy vegetables, fruit and nuts and seeds, whole grains and pulses. Basically I would have to live on fast food to avoid folic acid. I think I shall just carry on as usual eating healthily until I know what side effects I will get. The commonest is red peeling hands and feet.
Is anybody else taking Cape/Xeloda?