Cancer Support thread 86 - Stay Positive

[LemonDrizzle10]

New thread as other one nearly full.

I don't know about the waiting list @TopOfTheCliff but I thought my breakfast with oats and nuts and seeds and fruit was okay, but turns out my CGM thought otherwise! I think lots of people have had this experience. There's an unofficial Zoe FB group that's really helpful.

Oh god you all sound so sciencey and clever. I was just told to eat a balanced diet. Is during chemo the time to start changing things? I have put weight on but not too much yet. Im always hungry and I dont really know if I can keep blaming the steroids when I only have them once a week.

i enjoyed the reiki this morning and I was snoring terribly and I didn't even care. I dont now what it does.

i need to ask a personal question now. During your treatment did you have a swollen vulva? Im like a chubby toddler down there, is it odema?

I went to sign up to Zoe today also but it’s only for people who live in the UK. And I was told I’d start in August. I’ve decided now to wait until I can sign up in October when I’m in the UK for a month and I can receive the bits and pieces at my UK address. I didn’t fancy getting someone to send me a small pot then to have to try and send it back to the Uk by DHL or Amazon. 🙈

My Dr. son in law was talking about Biomes on one of his broadcasts last night then when I saw them being mentioned here I thought to myself this is twice now in 12 hours and the universe is asking you to listen.

I do eat well and I’m pretty sure there’s not much if anything wrong with my tummy but it all just sounds very interesting and if I can get around the geographical issues I’ll give it a go.

I said a few days ago I was feeling great and I’ve told my PT I want to enter the CrossFit open next March in the over 65 category. I just wanted something to aim for and I’m getting on very well with my new knee so I’ll give it go even if I’m just doing it to take part and not looking to be placed.

Hi @lowlythirdremove

I am also extremely claustrophobic and can't cope with lifts or even rooms without a window. I completely understand your feelings about doing an MRI.

Can I ask you what body part you need to have scanned?

I did 4 breast MRIs in 2022. I coped by taking 6mg Diazepam 1.5 hours in advance, holding my husband's hand, and holding the emergency buzzer in my other hand. The advantage breast MRIs have is that you face downwards into a short of empty space. It's easy to keep your eyes closed that way, plus the machine is kept cool which I find more calming than a hotter temperature.

I can't say they were fun in any way, but I was proud of myself getting through them, and the 3rd onwards became much easier once I was more familiar with it.

I am now worried about the MRCP I have to do soon. My head will be inside the machine because I am short, but apparently it will be possible to hold my husband's hand. That is to scan the liver, gall bladder and pancreas.

@Chocolateismyfavourite

I am so sorry to hear your distressing news, it's what we all fear isn't it.

I know that there are new treatments coming out at a much faster rate than ever before. That's what gives us hope I think. I really hope exactly the right treatment for you is included in these new things.

My memory is appalling, was it you who will be on immunotherapy? If so, I have been on two for 8 months and I find them much, much easier to take than chemo. I am on Trastuzumab and Pertuzumab, so the monoclonal antibody type of immunotherapy; I know there are various types, so some will be harder to take.

@SummerCycling yes thats me. thank you for the info, good to know its easier to take than the chemo. You're right, it does give hope doesnt it.

@TopOfTheCliff Not to hard to resist then lol.

My diet is sort of half and half, half oven type meals, the other made from scratch, Im vegan too. I keep thinking I should be eating better but its difficult some times, although I'm good at eating fruit and salad. Ive started these last few weeks drinking coconut water and drinking green tea (with lemon), no harm in being more hydrated and drinking a bit less cafine.

I’m just going to post a quick message so I can be on the thread - it’ll help me face reality.
Looks like I have Primary Peritoneal Cancer - still to be diagnosed exactly.
I had abdominal distension (better now I’ve stopped HRT) and a groin lymph node. CT showed ascites and peritoneal seeding. Laparoscopy is on Tuesday so they can take biopsies. My ca125 was over 1000

I look completely well! It’s completely unbelievable to me that this is real. But I also know that this how cancer takes hold. The internet tells me this may well go very badly for me - I feel I have to acknowledge that - but also remain optimistic.
I’m told I’ll have chemo then surgery. It’s a diffuse tumour which will spread easily, and I guess they need to get control of it.

Ive just read the last few pages, but I’m impressed by the warmth and kindness and humanity I’ve encountered already. It’s just what I need to hear.

I guess off loading here also helps us not to off load on everyone in real life? And any advice is probably invaluable

Thank you.

It wasn’t that quick a message!

Sorry you’re here @RedRosesPinkLilies - I was just thinking how weird it is to have cancer and have no idea, then you have treatment to make you better but it makes you feel iller. Lots of us will say this stage when you know you’ve got something but not exact what or how it will be treated is the worst. There’s lots of knowledge and empathy here, so post whenever you need to

Hey @RedRosesPinkLilies in the nicest possible way, sorry you're here.

I'm fairly recently diagnosed with stage 3 cervical cancer, currently waiting to start treatment mid may.

Can totally relate to feeling completely healthy and knowing you're going to have treatment that will make you feel worse, it's a total headfuck. The logical part of me knows that this is often the case, but for a while there was a small part expecting a phone call saying they'd got it wrong. Wishful thinking I guess.

I do feel better now I know what I'm dealing with and have a treatment plan in place. I'm finding it a bit tricky when my partner and family members want to make plans for post treatment, as they seem to have reached the foregone conclusion that it will be a perfect success when I am terrified it won't be so I'm trying hard to live in the day today right now. One step in front of the other and all that.

Thank you x

Welcome @RedRosesPinkLilies to the thread nobody wants to be on. It seems to be totally normal to react to a cancer diagnosis with disbelief denial and rage. That is why we have our well padded virtual Rage room so we can let off steam. This is also the place to have a rant about all the delays and misunderstandings with medical staff. One of our rules is No Googling! You can guess why. Stick to NHS sites and Macmillan if you can.

@ClashCityRocker there is a very good article by a Psychologist called Peter Harvey from Leeds about recovery after treatment. He explains beautifully why it feels so hard to make plans and resume normal activity. The advice is start small and just go away for short trips close to home.

I have had a very hectic day and managed a spot of tidying at home as well as going out on the river. Tomorrow I am off sailing again for the weekend. I’m very happy that my fitness is creeping up despite the oral chemotherapy. So far so good!
Top

Thanks @TopOfTheCliff I'll look it up. Hope you have a wonderful time sailing!

@SierraSapphire that was one of the hardest tings for me, pre diagnosis, I felt absolutely fine, no discernible lumps etc. Then came the treatment, and I was not fine. That was when I was ill. That took a lot for me to get my head round. Still does tbh.

@EachandEveryone I am not that sciencey just looking for a way back to a healthy weight and healthy eating once I have seen off this bastard cancer and the ghastly chemotherapy that is messing up my system. The intelligent scales I bought say I’m 32 fat and 29 percent muscle which ought to be the other way round.
@PollyThePixie tell us about the CrossFit. Is that done in a gym or outside? I love goals too but I need my hip replacing before I can do stuff like that.

@RedRosesPinkLilies sorry you find yourself here, as Top says, use the rage room, it helps very much. I know how you feel, the same as a few of the others have said, despite it being in my mastectomy site again, so i can see the lump and knowing its in my liver, I feel perfectly fine, its, unreal really to think its in there, isn't it.

@TopOfTheCliff Have a lovely time sailing.

My friend has booked some sort of surprise for me this evening, I think its dinner out, but not sure, maybe the cinema as we often talk about that, still whatever it is will be lovely and very kind of her.

Have good day everyone.

Welcome @RedRosesPinkLilies , and I'm sorry you find yourself here. That sounds a lot to take in. Hard to have a rarer cancer too as there are fewer people around with direct experience. (I have BC so a different kettle of fish.)

I absolutely agree that it's a really hard mental adjustment to be feeling completely normal and then to discover you've got such a serious condition. But to offer a glimmer of hope to people just starting treatment, I have to say that in some ways I feel 'better' than before I was diagnosed. I've had surgery and chemo and am now on hormone treatment and in the middle of 19 sessions of radio, waiting to start a long-term targeted treatment. All of those have side effects: I've been pushed into the menopause, and both my arms are painful - one from the surgery, one from the damage from chemo. I have no hair and my nails are falling out. Sometimes I can't concentrate and I can't sleep. So that's all completely shit - obviously. But I have stopped drinking, am eating better, taking more exercise and saying no to other people more. I don't get headaches any more, I managed to run (slowly) for 30 mins yesterday, I've let go of some of the other worries I used to have as they seem so trivial.

I hope that doesn't sound too blithe - I am furious, scared and miserable quite a lot of the time too. But when I was diagnosed last August I imagined I'd have a whole year of feeling dreadful all the time, and it hasn't been like that.

@RedRosesPinkLilies welcome to our lovely thread, so sorry you find yourself here. I have ovarian cancer which I think is treated in the same way as primary peritoneal cancer. My tumour was an incidental finding when I being investigated for a blood cancer, so I had already considered a malignancy, just the wrong one. I also had ascites at diagnosis and have had chemo and surgery. I'm currently on oral chemo. In many ways, 3 years on, I'm still in denial, but at the same time I'm permanently anxious about it all. I'm medicated for anxiety but it doesn't stop the thoughts. I still have an irrational fear of the postman and get very fretful around my many appointments. It's so difficult to look into the future whilst managing your own emotions and the expectations and hopes of others, unless you've experienced it, I don't think anyone really understands.

@dotty2 I think you have nailed it. You expect that the whole time you are on treatment you will feel awful and have no energy so when there is a good day when things don’t hurt too much and the sun is shining and there is good coffee and cake suddenly life seems very sweet. I have learned to savour those good moments and cherish the memories. On my sixtieth birthday with my party cancelled due to lockdown we played crazy golf and despite being bald and weedy I beat everybody. It was fabulous! Also when your memory is like a sieve you can’t remember what it was you were worried about!

You've pretty much described exactly how I feel @Fantasea - including the fear of the post!

Hello everyone,

I hope we are all coping well despite the circumstances we find ourselves.

Sorry to see you here @pinkroses sometimes I don't know what to say but pls keep posting as you will get immeasurable advice on here.

Has anyone (who has completed chemo) found to have hayfever afterwards? I have a cough and been prescribed antihistamines but my anxiety is telling me something different. I have cardiology next week to check my heart as I am still on herceptin so hopefully will know more then. My nails have gone totally dark now and will probably fall off, my thumb looks dreadful. I hope you all have a restful Bank Holiday weekend.

Just looking back on the last few posts it’s so true. I’ve just completed my fourth cycle and I’ve never felt so bad and I have two
more to go. I’ve started to feel quite giddy and I’m wondering if I’m anaemic also. Everyone keeps telling me how well I’m doing it annoys me really I’m so fat and quite plain these days and public people are now noticing like in M and S yesterday the staff were coming up to me and asking if I need any help. And every time my eyes filled up. I’m crying much more than I did the first three months. Every bit of kindness soneone shows me results in tears.

I still can’t believe it’s happening to
me. On paper the prognosis is rubbish but my consultant has been so optimistic as we know it’s viral and it responds well to treatment. Im
thinking it must be hpv but I’ve never had a dodgy smear and had a full hysterectomy five years ago. This cancer malarkey really messes with your head. I’m going to clean my neom diffuser the bloody thing only worked once at Xmas. Then I will try to lean up. The cats need brushing but I haven’t got the energy to chase them. My sister told me to go back to bed but it’s not something I can do in the middle of the day, can you?

@Chocolateismyfavourite

It really does.

I have personally met two people who were stage IV who are now in full remission. One with bowel cancer and a liver met, the other with HER2 breast cancer with mets in the bone, liver and lung.

I do think it's extremely rare to get full remission at stage IV still, but things are moving that way for certain cancers in people with the lucky phenotype, which is incredible really.

Keep us updated on the treatment plan and how you get on. x

Is the Rage Room free? Got to RT only to be told they changed my appointment to much later this afternoon without telling me. I had plucked up the courage to meet a friend in London afterwards for lunch (who I haven’t seen in a year) before she flies back to the US, and now I can’t get there in time because they’ve fucked up. AGAIN.

Oh that’s pants @WorryMcGee Rage room all yours.

and @EachandEveryone If you can’t go to bed in the afternoon now, when can you? Listen to your sister and what your body is telling you. Sorry you’re feeling fragile and low

Just want to say thank you for all the kind messages.

I do know I’m in the calm before the storm. But it really helps to hear from others in the same sort of position- and even to know endless patience and forbearance may be required (@WorryMcGee)

I think I need to hand part of my life over, and do the best I can with the rest of it.