Cancer support thread #76 - newbies welcome!

[Bloodybridget]

Here's the next thread for anyone at any stage of cancer, from noticing a possibly warning sign, through tests and scans, diagnosis, treatment and beyond. Come on in for advice, sympathy and support.
The last thread is here.

If you've been on a previous thread, please come and say hello and introduce yourself!

If you are a relative or friend of someone with cancer and looking for support, please look for other threads; there is one in Life-limiting illness for partners - link to latest. This one is for cancer patients ourselves.

@Acinonyx2 Funny, a friend who's been through this just sent me the same info about exercise! Guess I have to haul myself out of bed now... ;) Seriously, though, a really good tip.

That tip about walking is the kick up the backside I need. I am on day six and I feel soooo sluggish - I am basically just sleeping all day. I know I am supposed to take it easy, but I feel that I am becoming so lethargic it is really bad for my mental health. I'm going to try to force myself to do a short walk tomorrow, even if it's just around the block. I think all the warnings about side effects and not getting an infection have made me so paranoid that I'm scared the least little thing will break me!

Tonight the stress of my situation finally hit the fan. I know DH has been stressed and worried this past few months with my diagnosis and having to give up his work to stay at home with me and work shorter hours.

Hit button too soon. Tonight after dinner my teenage dd was being argumentative with him (don't even know what shared it ) and it was all funny to start. Then she was a bit disrespectful and he lost the head. She stared crying I turned on him and the argument got out of hand. I feel so guilty as this is not us and I know it's the stress of my diagnosis affecting everyone. I was raging as she has an exam in the morning and she didn't need this on top of everything. I get he is stressed too but he's a bloody adult and I'm the one with cancer. I love him so much and he is such a good man but tonight is the first time I really felt like punching him In the bloody face. I didn't though lol. He's so sorry now but after tonight it worries me how he would cope with teen outbursts if I wasn't here to referee. My daughter is the world to me. I'm the one with cancer yet I'm protecting everyone else from their emotions. Please tell me I'm not alone in this. !

Now I've said it I can put it to bed.

@AlbertCampion yes to the mental health aspect - this is something I really felt today after giving myself a morning in bed, which instead of restoring my energy just made me feel depressed and hopeless.

@gillmoregirl really sorry to hear that, but I’m sure it’s very normal and maybe even healthy to let emotions out a bit - better than stony silence? I’m only a week into this and already feel pressure to be strong for my parents and kids; I can definitely be more raw with DH but I’m not sure how much of my sobbing he’ll be able to take in the months ahead without it starting to wear thin. Hoping that I can frontload the tears now...?! And be braver for everyone once I’m into treatment.

I don't have any of the mentioned below but felt the quick need to say your all amazing women!! And will get through this!! Well done to all of you for your strength and positive attitude!❤️

I haven't experienced that, no, @gillmoregirl, probably only because my kids have left home. Actually, having said that, I do worry about the dog; he's very harsh on him, and gets easily irritated...I guess that's not a fair comparison, but it's the closest I've got!

I'm really worried about how DH, my mum and the girls will cope afterwards, but I have to try and let go of things I can't influence.

Thanks @jewelsx for the good wishes. Getting through this means being released from pain by dying though, for those of us who can't be cured because the disease has spread.. And it's not a special strength any of us has: we just have to get on with things as best we can, like anybody else would have to.

I'm loads better if I walk each day. Also I am knitting dishcloths and make myself focus on the knitting, looking at the wool moving round the needle. Sounds weird, but helping

@gillmoregirl you're absolutely not alone. I completely get the fear of things falling apart if you're not there. I have been massively over compensating recently and being very lenient on DS, which means that DH gets frustrated and swings the other way, to compensate for my leniency! Then I get worried and we end up clashing. I'm also worried about DH because I know he is desperately trying to hold everything together and that is putting a huge amount of stress on him. I agree with what others have said - getting things out in the open is probably a good thing. And, ultimately, you all know you love each other and can get through this. Hope DD's exam goes ok today.

@AlbertCampion day 3-5 I didn't leave the house just too sick and tired. Day 6 I walked 40 mins and then immediately slept 2 hours. Day 7 stayed home and got into an extremely dark mood. Day 8 - back out walking. So I think just a few days around 3-7 it may be just a bit too challenging although short walks if possible - but the rest of the time - get on out there! I'm back out this afternoon. I was told the general fatigue is not 'genuine' and not relieved by rest.

@gillmoregirl I think we have a similar set up - it's me, dh and dd15. But the dynamics are very different and I have kind of the opposite concerns. Neither show any emotional response to my illness - especially dd . I keep her up to date but she doesn't comment or show any response of any kind. I worry that if things go badly she won't process it at all until it actually happens and I won't be there to help (my top no. 1 fear dwarfing all others). I don't see dh as being able to deal with her emotionally - I am the emotional facilitator in the house. I feel like the only person feeling and reacting to this and sometimes I wish they would actually show some emotion. When you said your dd ran out crying (earlier) I'm not proud to say I actually felt jealous.

@BitOfFun Yes - my favourite advice: you don't have to be strong or brave, you just have to show up.

Morning all. Just popping in. I know it probably sounds sh1t and a bit saccharin but I read this thread in awe of what people are dealing with and that you have the energy to support others.

Walking has always been my way to chill and relax and I started again because of this thread. I wish there was a way to give a good virtual hug.

@gillmoregirl, you are definitely not alone. DH is a wonderful dad, but he is not necessarily patient, and often doesn't spot when the teasing needs to end..... One of my main fears on gloomy days is how he would cope with the children, on a practical level (we have 4 children, close in age, and still young at 7-12 years), but also on an emotional level. I think sometimes things like this just come to a head, but "better out than in". I hope things seem better today and that DD's exam goes ok. Hasn't she just finished GCSEs, or am I confusing her with someone else's DD?

Do you think speaking to someone would help your DD, @Acinonyx2? That must be lonely for you, feeling that they're not responding to events, especially as the chemo seems to be hard for you at the moment. Coping strategies are strange aren't they. DH likes to make light of things, which is usually ok, but sometimes a bit too much.

I agree with all of you saying walking is good for body and soul. I had to have a few weeks off as my feet were so sore and cracked, but back to walking now, although I seem to be exhausted this round of chemo, so shorter walks. Looking forward to finishing in Jan and having a daily walk. BUT @gilmoregirl, capecitabine hasn't been too harsh and this is my 7th round when things have hit me a bit more, so you should avoid that if you're having 6!! I recommend white cotton gloves at night, with lots of moisturiser (does provoke comments from DH about sleeping with Michael Jackson.....) and Flexitol is fab if feet start cracking (I've used lower strength throughout, now on the dynamite 25% one, and my feet are happy again).

Hope your mouth is better @Bloodybridget. Hello to everyone else.

Topic of the day seems to be the benefit of exercise. I managed to hobble down to the post box yesterday to post my Christmas cards. It’s the furthest I have walked in two months. I am doing a great impression of an escaped convict with my shaved head and imaginary ball and chain. The ankle is getting better quickly now which cheers me up.
I’ve had my pre-op check and been given my cuddly heart cushion “made with love by the Brixham Soroptimists” and the drain bag. I’m going in at 9am on 21st to have a guide wire inserted in X-ray then crossing to the private hospital for surgery in the afternoon and hopefully home by supper time. Three more appointments booked before Christmas for dressings. The hardest thing is the BCN doesn’t want me to cycle or knit for weeks afterwards and that has been keeping me sane. It’s the axillary node clearance that is causing me the most anxiety not the lumpectomy.
We have arranged our Christmas dinner to be picked up from a local pub. They are struggling to make money and DH won’t have to cook so win win.

@backformore I have a triple positive BC and it means I get the kitchen sink regime with every mode of treatment. Herceptin is an immune therapy and there is a great film called Living Proof on Amazon all about it. 40 percent of people treated with it get a Complete Pathological Response to chemotherapy which means the cancer melts away and there is no sign of it at surgery. I think I have had this CPR, my mammogram and ultrasound went back to normal after 5 rounds of treatment. The injections go on for a year if the cancer responds and lifelong if there is residual disease.
There are newer treatments coming along all the time.

@BitOfFun I feel for you. People don’t know how to talk about Stage 4 disease because all the Brave Warrior stuff doesn’t work. We know how hard the struggle is. Maybe the answer is the same as we tell the newbies: don’t look ahead just live in the now and be mindful. Hugs x

Best wishes to all. I’m trying to get all my presents wrapped and posted this week.
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Nice to see people talking about knitting again!

I don’t, but remember it cropping up a lot when Leslie was here. I’ve newly got Amazon Prime, so intent to start watching Parks&Recreation soon

@starmer very hard to get dd to talk about anything but I am keeping that in mind going forward.

@TopOfTheCliff Very interesting about Herceptin - I'll have to look up that film. Do you also get Pertuzumab (that's the one I'm allergic to)? Really hope your surgery is as smooth as possible. (I'll also be having node clearance and it is the thing that most worries me too about the surgery.)

Dear all, I have been reading but not posting for a few days, I am sorry to hear about all the struggles - mental, physical, with partners and DCs, and all the rest. And am sending a warm welcome to newbies who are coping with tests and diagnoses, sorry I haven't got oomph to check in with everyone individually, but you all have my very best wishes and sympathy. @BitOfFun you are always in my thoughts, and thank you for talking about incurable cancer. You are pretty awesome.

I'm not in a good place - thank you for all the kind messages and enquiries. No sign of mouthwashes making any difference yet, in fact my mouth feels worse, and one of them that I'm meant to use three times a day before meals, makes me retch. Also on Wednesday my oncologist told me that the baseline CT scan I had nearly two weeks ago showed a new lung nodule, it's absolutely tiny and very probably nothing to worry about, but of course I wish it wasn't there. I'm very tearful and fragile. Oh and just to put the fucking mouldy icing on the stale cake, my neutrophils are 0.2 so unless they perk up considerably by Monday, chemo will be delayed.
I feel like I should now say something positive about all the ok things in my life and how loads of people on this thread are coping with as much and worse, but I'm not going to! Modelling absolute self-centredness and shameless poor-me-ism!

@Bloodybridget just diving in to say your credit is good with this thread bank so you don’t have to balance the account in every post

Oh darling Bridge- it's just plain shit today, I get it. I mainline fruitella when my mouth hurts, just to distract me. Sending a friendly elbow bump .

Good evening ladies, well it is definitely ovarian cancer. I went to A&E last Friday with a swollen abdomen and leg and was admitted for the week and came home yesterday. I was told the diagnosis of OC at my bedside by one of the gynaecology team so no Macmillan nurse or box of tissues. Whilst I was in, they drained the ascites and scanned my leg to reveal another DVT which has formed over the remnant of a clot I had earlier in the year. I also developed the most horrendous constipation which left me crying in pain all day on Wednesday and after no luck with laxatives and a suppository, culminated in an enema in the middle of the night to release the rock hard boulder tmi. I am still waiting for my treatment plan and am feeling so exhausted and worn down with it all. I could have chased it up (again) today but just wanted one day away from being the cancer secretary. I will start harassing them again on Monday.

I have been reading the thread every day and am sending love to you all xxx

Ladies, sending you all lots of love. Anyone who mentions brave fucking warriors can fuck right off and fuck off again

I came in to reply specifically to @backformore about anxiety in the middle of the night - especially in the early days of diagnosis. I planned my funeral, the party that follows, the video message I would leave for my friends (thankfully I guess I don't have kids). I'm usually a very rational person - I guess I found the trick to be given into the anxiety for a little while - it's normal. Acknowledge it. If there is someone who you can message in the night do so (thankfully I have friends and family in Canada and Australia so time differences worked for me in terms of support). I found that the next day I was much better. I also got some sleeping pills which have helped enormously while I've been waiting for things to happen.

Other times - thankfully rarely - I got angry over something inconsequential and had a good snotty sob. This also made me feel much better.

So I can't remember if I told you that I have my post transplant PET scan next Wednesday. My transplant nurse is going to see if I can get the results before Christmas on 23rd. Which is now making me anxious all over again.

I've articulated all my fears out loud about returning to work and life. All the fears of how I would cope when I have to do all this again. Can I cope with another transplant - will there be a kinder treatment by then. What if I can't get my pre-cancer zest for life back. My poor nurse was only calling to check how my feet and mouth were.

@FizzyOrange much love to you and a gentle squeeze.
@BitOfFun I’m keeping you in my thoughts.
@Bloodybridget I hope things are on the up for you soon, the grind of it all is so difficult.

I too read regularly and don’t always have anything to say. I’m a bit concerned that my treatment may have to be delayed because DD2 has been sent home from school to self isolate due to a classmate testing positive. I need to call them on Monday.

@Bloodybridget That sounds really miserable and these things do stack up so. Surely there is something more they can do about your sore mouth - some other stronger potion with aesthetic in it? Wish I could pump up your neutrophils for you.

@FizzyOrange I have been wondering about you Fizzy but didn't like to ask. I am shocked and horrified by this turn of events (I suppose at least there is action now). I am mightily fearful of constipation - hideous torture. What a dreadful week - I hope you can find some moments of calm over the weekend.

Sending love to all xxxx

I always keep glycerine suppositories in the house in case of bad constiparion...its one of those things isn't it?
Once you've suffered you never want to go through it again!