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.

@balkanscot Good to hear from you. You've made good decision re Christmas Dinner. No stress. 🦃

@littlebillie. So sorry you are back. Hope you get plan in place soon

Can I just park my feelings here please.
Well it was bound to come. Me DH and DD were apparently all doing well this past week. Shit hit the fan tonight. DD was in poor form she's not been sleeping and was didn't want dinner I made. Her dad was giving off that she needed to eat. She went to her room and he and I had words. I went to her room and she was in bits admitting she was so worried about me. She cried sore until she took headache. She's also worried about me missing my operation if hospitals cancel. (No more news in our house) In soothing her I told her not to worry I would be ok and get well as soon as I could. I know you are not suppose to promise this but ????

When I came back up DH was at sink weeping softly while washing dishes. I also reassured him that things would be ok.

I could not feel more shitty than i do now. This is been the hardest day. I myself appear unable to shed a tear. Instead my head is bloody banging.

I feel so sorry for DD as she has always been my wee mini me and even though she's now a sometimes moody 17 ur old we are tight.

As you can imagine I'm not voicing any of my fears so Thanks for letting me vent.

@BitOfFun. Now I'd like to think I've been round a corner or two 😉😉 but I had to google what a moon cup was. 😌

@gillmoregirl I'm so sad and sorry to read this. I am thinking of you all and sending you a hug xxx

@gillmoregirl Ah that is hard. We so want to protect our children - but also for them to be 'with us' IFYSWIM.

Just catching up on threads, but a big hug to @gillmoregirl. You are having such a tough time of it. Crossing everything that surgery goes ahead as planned (2 weeks ish?). Your treatment may be a little different to mine, as I think they usually do radiotherapy for rectal cancers, but my oral chemo - capecitabine - sounds far better than the chemo that the rest of you have to get through.

And ouch to @TopOfTheCliff. Hope snacks are sorted, and bones are mending.

Love to everyone else.

@Gillmoregirl Can't find the words but massive hugs if thats ok.

Oh GG. That is so sad. You sound like a very close family and it must be worse for them and you that, for the moment, your reactions are different. You know them best. Would it help to involve dd in the practicalities for the next op? Put her in charge of choosing nice nightwear and organising your list of essentials? Some surprises for your hospital bag? Can she cook? Fill the freezer with low residue meals, if that's what you'll need?

Thinking of you a lot. I do think everything you've said points towards a slow-growing cancer. Everything crossed that you'll get good news very soon.

Well I saw breast consultant today and he is happy for me to see my normal breast care team and then a psychologist . He sees no reason why I can not have skin saver removed and the other breast taken as well.
This can be done on island and sometime in the next 3 or 4 months.
This is the best possible result for me .
Back story
68 years old.
2 lumpectomies and node removal last summer.
12 weeks paclitaxel as HER2+ .
Mastectomy and skin saver at Manchester in March . It should have been a diep reconstruction but was pulled the day of the operation due to Covid .
Tissue expander fitted and inflated . I hate it .
Manchester can give me no idea when they can do reconstruction and the further away I get from the original op the less I want another big one .
So a fairy small operation here on island sounds good to me .

So I will finish Herceptin in December and hopefully by then have date for bilateral mastectomy.

I just want to say to this group a huge thank you and soppy love to you all.
It has been a huge support to me over the last 16 months .

To all who are on this thread I send my very best wishes .

@gillmoregirl your family sounds very emotionally healthy and you can trust your lovely DD to work her way through this with you. It is okay to be sad and scared. I agree with @ThymeOut she might enjoy being in charge of some cooking or other chores for you. I am proud of my DC for supporting each other in their concern for me.

@Trumpton good news that you have the plan you want. Let’s hope it doesn’t take too long.

I’m getting more mobile after a week with my broken ankle stuck up in the air. I discovered an accident insurance policy so the money fairy is showering some more cash on me. All the news about lockdown is upsetting my friends but I seem a bit immune to it as I have been isolating so long. I will still go in to hospital next week for my LAST chemo, ankle permitting. Then a month till surgery. I’m getting there slowly. Trying to keep out of trouble.
Love to all xx

Hi @balkanscot good job on M&S ordering. I love cooking so I'm hoping to be able to cook on Christmas day. I find cooking therapeutic (there's only 3 of us so it's not too taxing)

I'm at the hospital now - bloods are good. Platelets now 40 so hoping they can remove my central line very soon. Hg is 106. Neutrophils down a touch to 1.1 but they're not concerned. So everything is going in the right direction. Doing physio exercises too - which is killing me slightly. My whole body is stiff and even turning over in bed is hard work. I'm hoping I can lose the walking stick soon.

Thank you all so much. She's back to school today so hopefully some 'normality' will help her. @Thymeout good ideas. But as for cooking. Lol. Not a clue. My fault I suppose.

Got my hospital letter today. I'm not entirely sure what it means when they talk about historical data and proceeding to major resection. I'll attach it and any clarifications are welcome. I will make contact with nurse in the middle of the week. Just need to get my head and questions straight.

@Trumpton Don't understand the medical lingo (I'll soon have to learn it). but glad the plan is positive and things are moving in the right direction. Xx

@TopOfTheCliff At this time I wish DD wasn't an only child. My hubby has worked in and off in south of France for many years and at those times she and I were on our own and are very close. Hence the Gilmore girls.

Hope you are planning to treat yourself. Xx

@gillmoregirl from my reading - and I am no expert - historical data to me means that they're looking at other's outcomes in the past. So the outcomes of people with similar conditions and demographic etc

@InOtterNews Thanks for this. I feel so completely stupid with all this new language. X

@gillmoregirl the letter is rather badly written, isn't it? Certainly not clear. I agree with Otter re historical data, but all the different tenses are not helpful, it's confusing about what they had planned to do and what they are now going to do.
Such a sad evening with your DD and DH. As someone else said, it's completely natural for your DD to be frightened and upset, and better that she should be able to express those feelings rather than thinking she has to protect you from them.

Hello everyone, I’m an oldie from this thread last year and in the cohort with @Bloodybridget, @Skap, @catnidge and various others - I read from time to time but don’t post now.

I just wanted to send @Bloodybridget my thoughts, I’m so sad to see your recent update about mets. I was always in awe of your ability to be kind and thoughtful to others on this thread so do make sure you lean on everyone should you feel the need! I hope you will find the chemo less bloody awful than the first lot and get lots more time with your lovely DP.

Also a gentle squeeze to @BitOfFun, I’m so sorry about the pain and trouble in getting decent relief. I hope the extra rads get on top of it.

Good luck, good vibes, best wishes to all you ‘brave warriors’ here (couldn’t resist sorry!) It used to BOIL MY PISS to read the inspirational stuff people would bandy about around cancer!

It's only me again 🙄
I popped in briefly a few weeks ago. Story is, is that I fell off my horse and landed badly. Taken to hospital, and they did a full body scan. They picked up an adnexal mass/cyst. I'm 5 years post menopausal, so that was interesting.

So A&E consultant referred me to gynae, and for an ultrasound scan, which I went for. The sonographer was lovely and quite chatty, and said that it looked like an 8cm ovarian cyst.

I left feeling reassured. But she did say there was debris inside it.

I go about my business ( got back on my horsie- yay! 😁) When a letter drops on the mat. I have to go for an MRI scan. I'm claustrophobic, so it was a bit of an ordeal 😳 but I did it! I wasn't expecting an MRI though- they'd just done an ultrasound scan 🤔

Then another letter drops on my doormat. I have an appointment with gynae. Ok. That's on weds.

Then on Friday, another letter on the mat.
It was a copy of a letter to my G.P dated a couple of weeks previously. Apparently my case has been reviewed in the gynae/ oncology MDT.

I have an 8cm cyst with irregular walls and debris. My Ca125, which they did as an add on to my A&E bloods is double the upper limit of normal 🤔 hence the MRI and gynae appt.

I crapped myself, then I sulked and ate half a packet of biscuits, then I went to talk to the horse.

So I have the appointment on weds - since the last MDT, I've had the MRI, so maybe I'll have an idea of what's going on.

I just don't know what to think, or what to expect...

@Bloodybridget Thank you so much for your comment. I think it's confusing too but felt that was my ignorance of medical terminology. Got a call from stoma nurse this evening. Probably cause she was cc'ed into letter. To be fair she was lovely and i ranged to her about the delay I've had and how can they just tell you you've cancer and send you home with no information. Or support. Poor woman I'm sure she was glad I was her last call. Apparently due to covid colorectal nurses have been redeployed and there is only one in post and a retired one doing a couple of days a week. Btw. I agree with @Brassica Your kindness for us all is amazing.

@Apocalyptichorsewoman that's a pretty crap situation for you, I'm really sorry. Is your appointment on Wednesday in person? I hope so, it's easier to ask questions when you're in a room with someone. Stick around here for support and advice, there are a few of us with specific experience of ovarian and other gynae cancers.
Many thanks to @Brassica and @gillmoregirl and others for kind comments. It's good to have the possibility/opportunity to be a bit helpful to other people, when I feel so needy myself, and am aware that I will very likely need a lot more help as time goes on.

@gillmoregirl I am so sorry you are going through such a hard time. I think the pain of all this cancer stuff is magnified by the fact that we are unintentionally inflicting pain on our loved ones and there is nothing we can do. I find the guilt unbearable at times. Sending you lots of love.

@littlebillie I hope you had good news today.

@Apocalyptichorsewoman got everything crossed for Wednesday.

Brain like a sieve so sending lots of good wishes to everyone else who has updated.

Someone asked about Cobweb, the thread puppy. After some real soul-searching we have had to give her up - DH was never over-keen on the idea and so she was always very much mine - and I don't think I can cope. I'm finding it very hard to talk about without crying, but I have a blog where I have written about it, if anyone is interested: Dark Mutter blog

It's probably all a bit outing, but fuck it - I'm not exactly trying to be incognito anyway. 🙂

@Bloodybridget ❤️. We gotcha. Xxxx

@AlbertCampion I'm a complete dog lover and I'm saying this honestly. It's a brave thing to admit you are not able to give a puppy the attention it deserves. I haven't read your blog but please don't feel guilty for making a decision that prioritises your health. Better let cobweb go to a home that can give more time than you can at them minute. Please don't feel guilty. I know from experience how much work a puppy takes. You don't have that extra time right now. You are right we are unintentionally inflicting pain but it doesn't make it easier. Cancer is a soul sucking bastard.

Be kind to yourself. Xxx❤️❤️

@gillmoregirl Thank you for being so kind. Going to take myself off to bed now before I start bawling again! ❤️

@AlbertCampion I've read your blog and had a little weep for you and your family. @gillmoregirl is right, you've done the kindest thing for Cobweb and prioritised your health but that must have been a difficult and painful decision to make. Hoping you can get some sleep xxx

@AlbertCampion Very sad to read about your pup but clearly you have done the right thing. The infection risk alone tips the balance - which I hadn't really considered. So true though, that there is shrapnel that you don't see coming.

Dh has a chronic condition for which he had a couple of major surgeries before dd was born and it has been under control since then - until now. Now he has a different related manifestation which we hoped a couple of small surgeries would deal with. But first one yesterday did not go to plan and they need to rescan and start over. It's going to be more of a saga than the drs anticipated due to an incredibly rare birth defect (dr could hardly believe his eyes and called 2 other specialists in to confirm). Timing is lousy as I start chemo next week. It's like turning the screw. You try to get into a zen space with the load and then the load increases.

Dentist and MRI today. Managed to find a private dentist to squeeze me in as they need a dental report for the bisphosphonate.

I need to work on my mental calm!