Cancer Support Thread 98: support for those diagnosed and going through treatment

[FcukBreastCancer]

Hello 👋

@Ted27 - how are you doing I am sorry I forgot to ask last night, is the itching improving? How many chemo to go?

@Ventress exams I think are more stressful for us as we cant do anything to help so it will be good for you all that they are done.

itching is pretty much every evening, i am keeping records of when its worse and trying to juggle antihistamines to see what works I am frightened of losing the effect of them for when i am really bad. The next option is gaberpentin i think and i am not keen.

i hope you have a lovely break - I am reading an interesting book from the library called the walking cure which shows how studies have been done to prove how important nature is to our health - looking at flowers, smells, walking in the fresh air, just being outside, by the sea etc, all have benefits - which we know but now they can prove with science, so living in a field would be good for us - except when it rains possibly....🌂

I’m sorry too @Ted27 - I hope you are feeling okay.

@cantbelieveIamhere- I honestly can’t believe how relived I am. DS is in a much better mood too which is good. The gaberpentin sounds like a horrid alternative. How much longer will you have to take the chemo? I hope your seagull is still visiting!

It’s my birthday today and I think I have a bit of a head cold. I don’t feel great at any rate so I’m staying in my room! We have postponed our restaurant booking until next week as I can’t swallow solid food at the moment. I do not want to watch DH an DS eat gorgeous Italian food without me🙂. DS has bought me an enormous bottle of cherry Pepsi max - bless him 😅

I hope you all have a decent day. Take care and look after yourselves 💐

@Ventress I hope you start feeling a little bit better. It’s your birthday! Happy birthday I’ll be praying for a wonderful Italian birthday for you. I’m not feeling so well either. Lost my appetite. I’m going to hit the “Boost” drinks shortly.

@ventress sorry to hear you are not feeling well I hope you will be recovered enough for your break. Belated Happy Birthday to you - shame you have to delay the food but good you still have that to look forward to. Yes Mr Seagull is still visiting me and because its not a set time or even every day its lovely when he does.
Phesgo injections are for as long as I can tolerate them, I dont know what happens if I cant - darent ask.

@Sbmpp sorry to hear that you arent feeling well either I hope the boost drinks help.
I hope that both of you are feeling much improved very soon.

Hi all, back after a rough two days.
@Ventress @Sbmpp such difficult discussions to have.

Im not really in that place yet though I have an idea what I want. I've mentioned in passing to friends that I want half my ashes thrown off the back.of the Mersey ferry and the other half off the Isle of Wight ferry. My will is very straightforward- my only asset is my house and that goes to my son. I just have to get it written down.

I have more immediate concerns about how to survive financially. I have enough money to get me through the summer, after that Im in trouble.
I really dont know when I"l be fit for work, and even then what I can do. I may end up just having a lodger.

I had no 10 of 12 chemo last Weds and its really knocked me for 6. Apart from nausea I've had every side effect and the fatigue is becoming over whelming. I really feel like my body is breaking down. I feel relatively ok today but spent the last two days in bed or lying on the sofa.
Although the scan I had at 4 weeks was very positive, the whole of my chest area feels very uncomfortable so I won't be happy till Ive had the next one - I feel a whole new era of scanxiety setting in.
@cantbelieveIamhere my skin rash has been awful, spread up my arms to my elbows, my hands are bright red and very painful. Ive taken co codomol which works a treat but makes me very drowsy.
@Pieceofpurplesky Ive not tasted much of anything but metal for several weeks now. Some days the metallic taste is stronger than others. I can taste Magnum double raspberry ice cream which is quite nice.
@Ventress I dont usually have fizzy drinks but Ive had cravings for Dandelion and Burdock - a friend finally found some for me yesterday
Pics are my rampant rose tree and my two furry friends.

@Ted27 Beautiful roses and beautiful cats, two of my favorite things. I’m so sorry to hear about all you’re going through. I’m not familiar with the UK govt, but are there disability benefits when you can’t work? I’m retired as is my dh and we’re doing ok but my heart goes out to you. For the SE too. I think I just completed my 28th round of chemo. I’m wiped out too and so weak I can barely walk. We visited our daughter yesterday to see her new apt. Wouldn’t you know it was on the 2nd floor? No elevator.

Hang tough!!!! (Scanxiety here too. Having a PetScan tomorrow).

@Ted27 sorry to hear you are feeling rough from all the chemo, it does take it all out of you there is no doubt about that - all I can say is that once its finished you do start to recover your energy but it takes time. I had all the side effects going too - You will get your taste back and that makes a big difference but it takes a while for it all to return. Good you are nearly done with chemo.

I have a scan next monday, the scans are scary arent they? Hopefully your rash will be better after chemo, I dont have a rash with the phesgo but the itch is with me every evening and some days but mostly evenings. Yours does sound really painful so maybe its more chemo related than phesgo related?

The cats are adorable, did you get them together? Also stunning roses, I love a rose especially if it has a scent. Could you apply for PIP?

@sbmpp bless you too, the fatigue and weakness are awful. Its good we are here to support each other. Good luck with your scan too.

Wonderful photos @Ted27 sorry to hear things haven’t been great for you with the chemo. As @cantbelieveIamheresays, it’s difficult to cope with. I can’t believe Sbmpp has had 28 rounds! I hope your scan went well and the phesgo itching has subsided. PIP is a great idea. I won’t lose all of salary but enough to notice the loss so I have applied. It’s not a quick process so I’d definitely suggest getting it started!

I’m so sorry you have fatigue and weakness @Sbmpp. That sounds unpleasant too 🙁*I hope the scan went well .

your daughters new apartment sounds challenging ! I hope it works for her 🙂

my update is that we didn’t manage to get away. I had half expected we wouldn’t! Anyway, we came into hospital for regular blood test and oncology appointments and ended up being here all day having test after test and then, at almost 10pm, I was admitted. Hopefully just for a couple of days. I had my chest drained as usual but the ct scan showed blood clots in my other lung so that probably accounts for the breathlessness.

I now have to have blood thinning injections and am back on nasal oxygen.

no mini- break for DH and I! Oh well, we will do it another time 🙂

@ventress so sorry to hear you are in hospital I hope they can soon get you better, what a shame to miss your trip away - but it has been very windy and on and off rain so maybe the weather will have improved by the time you get to go.

My scan is on Tuesday, they have helpfully booked the scan at 830 am and then my phesgo injection is in the afternoon so two trips to hospital in same day.

My itching is nothing compared to your symptoms, I am so sorry and send you best wishes for a speedy escape from hospital.

@Ventress Oh wow what a day. I’m hoping all these problems resolve quickly. I had to take the injections for the blood clots too. After 3 months my abd. was one large bruise. Thankfully at that point it was 3 months of shots and I could go on the pills. I’m sorry about your canceled trip. Hoping when you get to take it again you’ll feel glorious (how nice that will be). I know the hospital sucks but at least there’s someone there to give you your shots! Hang very tough!!!

I hope you are discharged soon @Ventress
I had chemo number 2 today, before the Paclitaxol they pumped me full of steroids and piriton to try and avoid another allergic reaction - it didn't work and I couldn't breathe again. More meds to get me back to normal. Was even more scared this time. I went on to have the second chemo but I worry I am
not getting enough as LCSC is chemo resistant as it is.
The positive is the piriton has sent me to a deep sleep, something I've not done properly for a while.

@Pieceofpurplesky that sounds scary I had a terrible reaction to my second dose of chemo and after that they had to slow the infusion down. It doesnt help you at all does it when things go haywire every time, at least they are alert for it once its happened to you. How many more to go?

@Ventress thinking of you and hope that you are being well looked after and can go home soon. 💐

I have one more before a scan to see if it's working. Then either have more chemo or will be able to have the debulking surgery (although they don't seem keen so whether the cancer blobs are in weird places?). If neither work they give me stuff to stop feeding the cancer and I guess life becomes a waiting game!

Thank you you are all so kind. Well DH and I had “the talk” this morning as I’d had about three people (including the doctor) wanting me to discuss end of life wishes. I have told them that I don’t want life extending procedures. DH agrees, Apparently the blood clots I have are large and life threatening- great!

we have discussed the funeral, who to invite, where to have it etc. we also discussed Christmas 😊 just to mix it up a little. If I’m not around by then I want DH to have his sister close by.

i really hope your scan goes well @Pieceofpurplesky🤞and whatever treatment they chose is effective for you,

thank you @cantbelieveIamhereand @Pieceofpurplesky💐 hopefully they will let me out tomorrow.

I’m so sorry the increase in piriton and anti-histamine didn’t work 🙁 are you feeling better now? I hope you are home at least and glad you slept. I was always so sleepy after my chemo infusions.

@Sbmpp. The injections aren’t great are they? I am having tablets now rather than injections. I have been moved to pleural. Everyone is very excited about my chest drain! 😊

I hope you are okay (as you can be at least)

hang tough lovely ladies 💐

@Ventress Dear Oh dear - I'm really sorry you're going through this - you've been particularly helpful on these cancer chats - I've enjoyed your contributions - make sure you are comfortable - you take care now - Dan

Thank you Dan. I hope you are doing well and enjoying those Sunday lunches!

@Ventress so sorry to hear that you are going through this. I've been avoiding this thread for a while and have a new user name (was fkckbreastcancer), but echo what Dan says. You have been incredibly helpful to me also. Are you religious or spiritual? I know my friend had a lot of comfort from her faith.
Thinking of you and your family

A couple of you have mentioned severe itching. Your not on tamoxifen are you? I had to stop taking it due to the itching.

@VentressSorry you are going through this. Although I am new to the board you have been so helpful and kind. Your DH sounds wonderful.
After all the drugs I felt stoned and slept better than I have in ages. Today I feel like I am going cold turkey!

thanks @VividDeeryour new username is great 😊 Thank you for your good wishes. I have spoken to my sister (she had primary breast cancer last year and has, hopefully kicked it). She agrees with me - one day at a time! although she is treating my parents like mushrooms! Apparently my mum hasn’t even told dad I’m in hospital. Not sure what to do about this though

please don’t avoid the thread 💐 unless you find that helpful of course, I don’t want you to feel you must post if don’t want to. I would love to support you.

DH is wonderful @Pieceofpurplesky, I am so lucky to have to have him.

thank you for your good wishes! I’m so glad you got to sleep, it makes such a difference to how you feel. Stoned is okay with what you are gping through, in fact , it’s probably better!

@Ventress, praying for peace in the midst of these talks. I’m awaiting the petscan results. Then the egd etc the following week. I’ve never gone into these tests before while having such horrible symptoms. I will always think of you.

Hi everyone. So sorry I’ve not updated for a while and hello to anyone I’ve not met before. It’s been a bit hard with treatments and fatigue butI’m coping better now😉 🤞
Ventress you are such a star, always kind, so generous and helpful to everyone including me. So sorry to read about the discussions but strongly hoping for more Christmases for you. One day at a time sounds like a good approach 💕sending you and your family huge hugs and best wishes xx
sending you big hugs and positive thoughts for your scan @Sbmpp , as you and Ventress say , hang tough everyone xx