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

[FcukBreastCancer]

Hello 👋

@Sbmpp yes thats exactly how I feel, that I need him here to cuddle and our lives were happier with him in it even though he gave me a lot of stress worrying over when his next seizure might be, the joy they bring outweighs all that and unconditional love is the best thing ever. Sorry you didnt get your treatment, maybe your body needs a break from chemo and someone has organised it for you.

Oh bless you both 🤗 I am totally with you about your gorgeous dogs.

I’ve been watching the local election results coming in (I’m not going near the threads though, they are visceral and I can’t cope with that at the moment). I did read that LA have an election too - mayoral perhaps? I forgot to vote which is embarrassing. I only remembered when I went to bed. I will get a postal vote next time.

it was DS’ last day at school yesterday. I didn’t realise this, although we did get an email from DS’ support teacher which was very kind and made clear that her team is there to support DS through his A Levels. He will get a small discount on his scores due to my illness. I’m not sure he wants the discount though- he wants to get the grades on his own work. We shall see, it’s all very real now with exams starting next week.

I agree with @cantbelieveIamhere, @Sbmpp. Perhaps you need a break? My oncologist told me that breaks in chemo do not hurt you. They carry on working. Hopefully that is the case for you. I’m sorry you had the big trip to the hospital though, thats rubbish.

I emailed Breast Cancer Now about lymphangitis but they have nothing to offer. They suggested I ring them or post on their forum. I’m not sure I’m ready to talk to someone yet though.

@ventress postal vote is so much easier its how we do it now. ts a big day - the end of school - hope he gets through his exams without too much stress and gets the results he wants/needs.

I am not sure I can talk to anyone either, my breast cancer nurse rang me today and said I sound like I am spiralling but the counsellor I got offered through Mcmillan was - lets say strident from the start and immediately put my back up so she did say I could have a different counsellor but I am not sure how much this helps.
I dont know what can help really, but I would say that this forum does help and as I have said its so nice that you are back as truly I missed your presence here. I am not cureable either but not ready to head anywhere else on here.

Have a good weekend and @Sbmpp try to enjoy the break from chemo, some things are meant to be.

@cantbelieveIamhere Thank you so much! Several people have told me that and I think I’ll take the advice. It would have been my 25th or 26th dose of chemo and TT and I am getting tired.

@Ventress Yep it’s voting time here too. What a coincidence. The Primaries are for Governor race, finals in November. The mayoral is for the city of L.A. which we don’t live in thankfully. Thanks for the positive note re: missing the chemo. My cancer care being palliative is scary and it feels like I have to be a step ahead of the treatment in order to stick around. (Big sigh: I want my dog back. Things were better then).

Things are better with a dog, that’s for sure. I’m feeling rather guilty about potentially leaving DH totally alone in the house. DS will (hopefully) go off to uni in September. Hopefully I will be able to stick around for a while and DH will get the opportunity to get another dog before I go anywhere 🤞.

please don’t worry about taking some time off the palliative chemo @SbmppPerhaps a chat with your oncology team might help set your mind at ease about the whole situation?

i love the US political system but i’ll admit that I know very little about how it works! I hope those primaries have worked in your favour .

after worrying that I didn’t turn out and vote, our local area remained the same as last time so my vote wouldn’t have made a difference! Deffo postal vote next time though 😊

I don’t blame you @cantbelieveIamhere- I feel the same. I do love this support group that we have here. I have tried the other thread but these lovely (mainly) ladies seem so much more ill than me. I have my side effects of course but they seem minor in comparison. I’m sorry I went awol for several weeks but I was really out of it (apparently) and a conversation we might have had would have been strange and unpleasant! I missed you though and am very pleased to be back. Please feel free to share whatever you wish. This is a lovely forum.

have a lovely weekend. I am going to a christening tomorrow. I am to be a godmother 😊 I’m glad that the parents have another godmother as I was worried that I would leave the baby without religious counsel 😂 Bless him, if he has to rely on me for religion counsel he will certainly miss out!

Oh goodness I’ve just realised I was rather morbid- apologies!

I think it was because DH and I spent most of the morning yesterday on the phone to my pension company and then most of the afternoon completing the government’s PIP form!

Have a lovely weekend ❤️

Hi, after some views please.

I’ve been on immunotherapy for 4 months for stage 3 melanoma, but my scans show that the cancer is increasing. I’m currently waiting for a new treatment plan - probably radiotherapy with something systemic (maybe chemo rather than a different immunotherapy)

My question relates to telling the DC, particularly my youngest who is in the middle of A levels. They know I have cancer, and we’ve sorted out all the extenuating circumstances stuff. DH doesn’t think we should tell them until the A levels are over, because he’s worried that the upset could completely throw them off course. I’m uncomfortable with this, as I want to be able to talk to friends about my situation and although we can tell them not to tell the kids I’m worried something will slip out somewhere! It’s also going to be difficult to hide that my treatment plan has changed. I’ve always been keen on being as open as possible with the kids, but maybe I’m being selfish and I should just ride it out for a few weeks. Whatever I do will be wrong, but I’d be grateful for your perspective on it

You’re not being selfish, you’ve got to do right for you. But whilst that being said, if I was doing alevels and my parents told me that it would really put a spanner in the works. I wouldn’t be able to focus no matter how hard I tried.

my parents did something similar to me when I was younger, but waited until I finished uni before they told me of the terminal news.

if you need someone to talk to there is always macmillion and you’re cns can always help too. The nhs do free therapy sessions for people with cancer, you have to be referred but the be wait can be long unfortunately but if it’s something you want you could get the ball rolling on that too.

It’s so difficult @Onewildandpreciouslifewe are in the same boat. Our son is taking his a levels now and it is stressful for him and us. DH spoke to the school lead some time ago and she has asked for letters from oncology or perhaps the hospital team. The evidence of terminal illness doesn’t have to be with them until the end of July, but the school have said the earlier the better. I’ve posted the .gov link in case this is helpful https://www.gov.uk/government/statistics/special-consideration-in-gcse-as-and-a-level-summer-2022-exam-series/background-information-for-special-consideration-in-gcse-as-and-a-level-summer-2022-exam-series

as @Bangersndmashsays you must do what is right for you and your family. I agree the telling him now would be very hard, our son has known my prognosis since I got it, so he has time to process.
big hugs to you.

Thanks both. It’s helpful to get an objective but knowledgeable view

Hello @Onewildandpreciouslife. Its a very hard one. My youngest was in year 12 when I was diagnosed stage 4. Had to be told, as I was very ill and went into treatment straight away. It did affect their mental health but there were also other family problems going on. I suppose it's not long till exams finish. Is it possible to say briefly that you're waiting for some different treatment without going into the details of the progression and keeping it minimal? I have had to make efforts myself to keep with what is known rather than future fears, at times. So just to pass on in a low key way if possible that a new treatment plan is underway. Not sure if this may be any help but I really sympathise amd hope you find a way through. My teenagers mental health did improve over time, of course I am lucky enough to have survived so far.

Thanks @livingwith - I think that’s where I’ve landed. It looks like I’m having radiotherapy next week, but he’s at school so I should get away with that!

I’ve been dipping in and out of these threads since my recurrence- am I right you’ve got melanoma too? Sorry if I’ve misremembered

@Onewildandpreciouslife sorry to hear your news but I was going to post yesterday and then thought twice about it only to see that @livingwith has said more or less what I would have said - just say that your treatment is changing and not say why yet.
The thing is that treatments do change all the time and also progress changes too, so your new treatment may then bring better news for you all.

Its all hard, but telling your children is very hard and I know my sons are dealing with it in very different ways so its hard to say whats best.

good luck with your new treatment anyway

Signing on. Chemo starts next week for Low Grade Serous Carcinoma. Pretty chemo resistant.

@Pieceofpurplesky welcome. Virtual hand hold over here. Sometimes the waiting is worse than the actual treatment / appt.

Thanks @Bangersndmashit seems like I have been waiting forever!

Absolutely agree with @cantbelieveIamhere, @Onewildandpreciouslife. Treatments and procedures change. My son is just 18 now. He was introduced to my stage 4 diagnosis last September- when he was joining year 13 and I was admitted to hospital. Wasn’t ideal! You must do as you need for your family.

How are you @cantbelieveIamhere? And @Sbmpp? I hope you have had a decent week.

dh and I went to a christening last Sunday, which was lovely but did wipe me out and I had to cancel the coffee date I had yesterday morning. Ah well, the christening was worth it.

i am now in my “week off” from chemo. I’m hoping that will make my side effects less. I have developed palmar plantar syndrome in both hands and feet . DH has emailed the nursing team to ask their advice. I do have an appointment with my oncologist on Monday so I’ll raise it, and the other side effects I’m having, with him. I also have my Zoledronic acid infusion and start of the next round of chemo next week .

ds has had his first two a level exams and doesn’t have any others this week, just revision (I remember a levels- they were horrible!).

I hope everyone is coping with their symptoms as well as possible 🤗

Welcome @Pieceofpurplesky. I hope the chemo treatment goes well for you

@ventress good to hear your christening went well. Also hope that your week off from chemo is a good one. I had to look up palmar plantar it doesnt look very nice, is it sore or itchy or both? Hope they can find something to treat it. The side effects of chemo are grim.

My side effects of phesgo continue - I went to see my gp who was very kind, he has said I can increase my dose of antihistamines and gave me a prescription for a higher dose - the itching is pretty much constant, on my arms sometimes shoulders - some days its worse than others, at the start i thought it was leftover chemo but no - its phesgo. So am juggling how much fexofandine to take and how much cream to put on at the moment and using ice packs and yelling the house down when it all gets too much. Anyway kindness does help as I told him I am now in the middle of gp, unit and oncology people all directing me to different places to get things done.

I am missing Oscar badly, it feels like the last straw and my poor husband doesnt know what to do for me.. Its only been six weeks and some days its unbearable. I found an old locket and have put some of his fur in it and am wearing it for comfort really.

Am going for an echocardiogram on monday - at least it doesnt involve needles.

@Pieceofpurplesky welcome, sorry to see you here. Good that your treatment is about to begin, ask away if you have questions.

@Sbmpp hope that your time off chemo gave you some respite.

I hope the stronger antihistamine helps you @cantbelieveIamherethe side effects of the phesgo sound horrible . If you want to talk about Oscar please do. He was a gorgeous boy and he’s watching over you. It will take as long as it takes. Don’t try and rush your grief.

DH googled the palmar plantar too as we weren’t sure what was going on. Not sure what it is with me but my side effects always seem to be a bit niche! I’m a bit hacked off actually as it’s put my hands and feet out of action - they are really swollen and red, and feel like they are burning. I’m taking quite a bit of paracetamol!

@ventress yes you are right to be hacked off there must be something they can do to alleviate it, its ridiculous to be effectively out of action - it doesnt leave much you can do does it.
I thought it was just me that got all the side effects I seem to get every one there is, if its mentioned I am going to get it. I hope that you can get it sorted out, maybe someone will come along with some tips.

Thank you re Oscar, yes I do believe that somehow he managed to hang on until my chemo had finished but the trauma of his death and the fact that I was banking on going back out on walks with him has floored me. I try to get out and walk a bit but everywhere reminds me of him and I end up in floods of tears all over the place looking like a mad woman. All the crying is exhausting. I have now planted his lovely rose and a plant that has heart shaped leaves and tiny blue flowers on his grave. He would have sat on them as he had no respect for flowers.

Thanks. The chemo has a less than 25% of working with this type of cancer but needs to work to be able to have surgery. Am feeling hopeless

Poor old DH is doing all of the cooking and cleaning at the moment. Bless him, cooking is not a strength 😂 thank you. Hopefully the meeting with oncology will give me some ideas. I don’t want to decrease the chemo dose if I don’t have to.

I hope the increased antihistamine will help you. It seems amazing that your team can’t alleviate the itching from the phesgo.

Oscar’s rose sounds gorgeous . Heart shaped leaves and tiny blue flowers sound lovely. I love that he probably would have sat on on the bed and flowers 😊

Your crying is cathartic- you probably need this. Don’t try to stop it, let it out.

on a different note - does anyone have a diet that oncology have given them? I am trying to stick with protein and fibre (which I’ve read is best for cancer) but I don’t know if this is a good idea.

Please don’t feel hopeless @Pieceofpurplesky . There is always hope 🤗 My cancer prognosis is 30% might get to 5 years but I’m ignoring that as it’s not what I want to hear. Be well, do the chemo and please update us !