Cancer Support Thread 94 - Sweetness and light - the two noblest of things.

[LemonDrizzle10]

@tilllly and Daisy.

My meds were not available when I went hospital for bloods this morning so hoping it's ready Friday morning and chemo is running late so I can take one while waiting.

My daughter has gone to her UCL offer holders day today and I'm just miserable that I couldn't go with her, I did have a good old cry to her last night which really helped get things off my chest.

I use it. I had appalling treatment through my three months of EC. Now on pax and carbo I take 2 tablets. I drift in and out of sleep. I don't think about or dread the chemo now.

I had diazepam when I started my chemo. I just took it when I needed it, including on the morning of my chemo to get myself to the unit.
I started doing Yoga online with the Helen Rollason centre near me - it’s been massively beneficial to my mental health, wish I’d done it years ago.

@tothelefttotheleft Sorry to hear that happened to you. If the tablet works like that for me I'm on to a winner and may actually get through this. Pick them tomorrow before chemo so hopefully they kick in before I get called down to the ward.

@tothelefttotheleft 2 are just fab aren't they!

They really are!

I feel a bit embarrassed that I'm taking them though. Like it's a bit of a failure.

@tothelefttotheleft You are not a failure, if it helps you get through it that's all that matters.

@tothelefttotheleft not at all, admitting you're struggling and getting meds for it helps you and the hospital . I'll quite happily take anything that will make it easier for me and them. For example getting my picc line required 2 pills which meant all done quick and as easy as you like. If I hadn't had them I would be panicking (full blown panic attack)!, crying, fainting (yes, more than once). Nothing would make me feel embarrassed about taking medication to stop all thag!

2nd chemo day today, praying I don't get called in right away at 8:30 so I can collect my meds take them and have them kick in. I didn't sleep well at all due to panicking so hoping I can get a nap in or something while I'm there.

Chemo went as smoothly as possible thank god (minus the volunteer who would not leave me alone during the cannula process and he just kept holding my hand which made me uncomfortable when I just wanted to hold my mums 🙄 and because I went non verbal I couldn't speak up for myself.) I had a male nurse (he was some eye candy 👀) who waited 20 minutes for my meds to kick in and he did the whole cannula process amazingly and the tablets really really helped calm me down. All in today went really well, don't remember too much of it though lol.

I also got my radiation and chemo schedule through and when I have cisplatin it overlaps the time of my radiation. Plus that chemo session is 9 hours long? Is that even possible?

Well done @catmomof3 !

I’ve come away for a couple of days before chemo starts staying somewhere nice. People keep offering to help me. I think I look doddery without realising!

Sorry forgot the pictures. Oh where is the sun?

@catmomof3 you did good today! Now rest. Volunteers mean well, but can do a bit OTT at times. The male nurse sounds promising with his skilled canula techniques! 😉

@EachandEveryone enjoy yourself wherever you are.

How are you @MothralovesGojira any joy with extending PIP? How's the stomach? Is it next week end you are going to the music festival?

I'm raging at myself. I decided to do a full supermarket shop, parked right at the top of multi storey, refused the lift and was then very loudly swearing because i was out of breath on the way back. But that wasn't enough; I then staggered to Costa and back
to my car, muttering " stupid fucking disease!" I dislike people right now. Annoying " friends" who say stupid/ irrelevant things!

Gggrrrhhhhh rant over!

@catmomof3 well done!

feet up now

Actually i think I'm mad/crazy!

@catmomof3 glad the chemo went well.

They will wait for you in Radiology until the chemo is done, just let the chemo nurse know and they will call down. Radiology seem very flexible and fit people in where possible around full bladders etc.

I actually went down with the chemo drip attached (not the chemo itself but the fluids) the day is long enough as it!

@JlL2013 But for the chemo session to be 9 hours and 40 minutes according to my plan seems a bit extreme for cisplatin.

Is it definitely ok to get the Covid booster when you are doing chemo?

The nurses said it is but I just want to check what others are doing and have been told?

@Whatevershallidowithmylife

Thankyou for posting that. It's good to know I'm not the only one who needs them.

Good rant @Enigma52 keep them coming! I always feel better for a rant.

I was told I could but I don't want anymore

@HellonHeels well the day ended with me bashing my outside broom hard against the ground, into a pile of hedge cuttings! I must have looked crazy!!

I genuinely have no filter right now and even had a go at the nice cashier in Superdrug because she wouldn't sell me dulcoease AND dulcolax (you can only have one or the other apparently ). I pointed out that dulcoease was a stool SOFTENER not a laxative. Computer said no, so I flipped and said did she know what it was like to have your digestive system turn to cement, from crappy cancer drugs? Then left on my broomstick!

@catmomof3
Well done for ticking another one off the list. At least you've got something to calm you down for next week. That was very restrained of you with the volunteer doing hand holding and really rather intrusive of him. You and your mum need to make it clear next week that only she can hold your hand because she's there to advocate for you. I don't like being touched by people I don't know and possibly would have reacted badly but how presumptive of him and how lacking in empathy he must be not to pick up on your discomfort. Next week tell them that you want your mum and only your mum and not a random Colin the energy vampire!

@Enigma52
Ah yes, the rants! I had one on the way home from hospital last year when the bus driver wouldn't give me a paper ticket. Why didn't the assistant just put it through as two transactions? Sometimes they just don't have any common sense do they?
I have a rant of my own this week. DC and I phoned PIP to get an extension and were on hold for 45mins which is ok as I always expect to wait but the woman who answered was something else. Now bearing in mind that DC has ADHD, depression, likely autism and selective mutism plus is transgender these type of things can be very tricky. The woman was very...um...abrasive from the off and refused to speak to me and would only speak to DC and wouldn't accept permission to speak to me until DC had passed the security questions. DC will only speak the the name they now use and will never say their dead name. Woman was insisting that DC said their dead name so DC went mute and started crying when the stupid woman insisted on mis gendering them - "she has to say her name" despite me correcting her every time. Anyway I eventually managed to get DC to say their original name which meant that they completely shut down and this woman just kept saying I will not talk to you (meaning me). Then the woman wanted bank details but by this time DC had started crying hysterically (which she could hear). I tried to explain that DC had MH issues and I would try to get them to speak but gave the bank name anyway. Woman just said and I quote "She's failed the security checks - Goodbye" and then she cut the call. We sat there in stunned silence. Then I called again and had to start all over again with another 45 minute queue. The next person was much nicer and having explained he took DC's verbal permission to speak to me and then DC & I answered the security questions between us so I answered the difficult questions while gently encouraging DC to answer for themselves. We got our extension without issue so now have another two weeks to get the form back. I'm going to have to get DC to sign a permission letter as they don't need an appointee but they do need support to deal with every day stuff. I was honestly shocked by this woman's vitriol (and it was really hateful) and have never dealt with anyone like it. I did have a bit of a rant at the nice man who didn't try to justify the woman's behaviour and just apologised. DC told me "This is why people like me kill themselves - because of people like that woman". We had hugs and they were ok later but it's the fact that it's now put that fear into them that they will not be treated fairly that's made me really angry. I won't bother complaining as I know (as ex civil service) it won't go anywhere even with a recording. Anyway exams are over so DC & I can concentrate on getting the form done.

And my stomach still hurts - bastarding cancer!

Well I had the Covid booster this morning.

Didn't realise you couldn't have jabs in your arm when lymph nodes have been removed. Got Picc line in the other arm so had it done in my thigh.