Cancer Support Thread 84 - gently crunching our way into autumn

[mowly77]

New thread as old one about to be full. As those who have been around far longer than me have said: Welcome. Pull up a chair, help yourself to a biscuit, a large gin, or a detox tea. Or all three. This is a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc., vent, scream, or discuss life in general.

Please feel free to join for support if you are going through tests as well, hopefully they will come back all clear, but if not we are here to hold your hand through the journey.

I think the daily swimming has helped and maybe I should be able to get a pool built on the NHS

I do think we should get free leisure centre membership. Having cancer costs so much money and it would be one way to recognise that, and we go back to it cutting recurrence, has to be a money saver in the long term!

Just venting my anxiety here. PET results call this morning. I’m physically sick with dread, feel like I don’t want to answer the phone and have to hear the words. It takes so much damn courage to just do that, feel like I’m scraping the barrel on courage after 4 months of it.

I had a clear CT 6 weeks ago but my CA125 rose after chemo 1 so they offered a PET. I’m hoping nothing shows up on it given the clear CT. I’m so scared. I hate this. The constant confronting of my mortality is really bloody battering me right now.

One (well meaning, I guess) friend told me that when I “beat” cancer, I’d never be worried about anything again, because nothing could be as bad. She actually told me this at least a dozen times, because she’s really forgetful. In the end I just snapped and said that firstly I hadn’t “beaten” anything. I don’t like warrior or hero terms of survival. My mum died of cancer, but I doesn’t mean she was some kind of inferior fighter, ffs. And also of course I still worry about things, not least about the cancer coming back.

If anything, facing our mortality tells us that bad things don’t just happen to other people.

I hope you get a positive phone call.

My scan results have come back clear. I am unspeakably relieved. No sign of any cancer at all, although it did pick up some calcification of lymph nodes that are possibly related to sarcoidosis which apparently is mild and meaningless.

my Ca125 has come down a little from 513 to 441 (still higher than pre operatively) but I’m hoping that’s not really a cause for concern given the scans.

I'm so pleased you have had positive results @AGreatUsername . Lovely to hear some good news.

Great news @AGreatUsername
I've had a tough morning, just had to tell my parents about the cancer, they are devastated but will be there for me. Also had the appointment for the biopsy results through, a week on Friday. Any idea what to expect from this appointment?

@AGreatUsername so relieved to hear your good news!

Woo @AGreatUsername that’s great news!

I had the call about my MRI brain scan too and it’s all normal. My weird deafness is probably due to chemotherapy. I’m so relieved I haven’t got anything else going on. It’s worth being brave getting the tests when the results are reassuring.

@fudgecat you will probably find you get information overload at the results session. They will tell you the results and also suggest the treatment plan. There will be lots of information (usually as leaflets to take away) and the Specialist nurse will probably take you away afterwards to see how you are dealing with it. It takes time to process all this stuff so don’t worry if you are just numb and blank.

Here at Tops Towers it’s chaos. FIL is going into respite care tomorrow, MIL is being sent home from hospital and DH is off to France for a much deserved weekend with his buddies. My SIL is lovely but a bit useless so I will be taxi, shopper and planner for the weekend. At least she can sit and keep MIL company. There are times when life is just really hard.

Sending happy vibes to you all
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Ive just got back from a short cruise and managed to forget about OC for four whole days. Im waiting on my monthly blood review as numbers up slightly last month. Also bit worried as not got a consultant at present, last one left. Im beginning to think its me because she was consultant No.6, Im due 6 month scan in a couple of weeks and no one in post to refer me.,

Anyhoo, went on first cruise on my own and thoroughly enjoyed it,except I darent get on the scales. The mirrors and fluorescent light in the cabin bathroom made me realise how old and tired I look, and the size of my tum! Is it inevitable that after a debulking your stomach muscles give up

@TopOfTheCliff so pleased your MRI is normal, what a relief it must be.

@thereisonlyoneofme so pleased you enjoyed your cruise. My tum is huge, I think it is a result of a debulking surgery and also that I can't stop eating bad food! Really hoping your bloods have returned to normal and also that you're assigned a consultant really soon, that is unacceptable to leave you in the lurch like this.

I had my review this morning and my CA125 is up 3 points, back to where it was before I started on Niraparib. I have a scan next month and I really wanted to be going into it with a stable number. I've been tearful all day since my appointment as sometimes it all gets too much. I asked the nurse about how they treat recurrences (getting ahead of myself as usual) and she spouted the usual cheery 'we treat OC as a chronic disease now, rather like diabetes'. I don't feel reassured by this as it's hardly injections (I had to give myself blood thinning injections twice a day for 8 weeks around my surgery so this wouldn't worry me) and diet. I think most of the problem is that I am so tired of hospitals and appointments that I don't have any reserves so even the slightest setback and I'm a weeping mess.

Sending love to everyone Xxx

Love and hugs for everyone finding life hard today.

Fantasea Ive kept up with your posts, and you are really on the same track as me I think, with similar feelings. I cant see a future at at all.
I actually met someone while on the cruise who seems keen on pursuing a relationship with me. God knows why I look a mess, and have never been a flirt so bit flummoxed ! He seems a very nice person and lives not too far from me, but I cant commit to anything, it wouldnt be fair, he lost his wife a couple of years ago, and I wouldnt put this burden on anyone though it would be nice to have someone as Ive no family a t all and been going through the past 3 years alone.

@thereisonlyoneofme yes we are on the same track and I can really identify with your feelings. I'm single too and it's really hard not to have someone with you through all of this. The man you met on your cruise sounds lovely and it must feel really unfair that you can't commit but I do understand. It's all so difficult and cancer robs us of so much.

@thereisonlyoneofme and @Fantasea I am single too, someone asked me the other day if I had thought of dating! I had a hysterectomy a few months ago, so God knows what's going on down there now, and I'm in the middle of chemo! At least I wouldn't need to worry too much about pubic hair removal (not that I am of an age where I worried about this anyway!). I care for my mum who is 89, and I do have a DB but he doesn't live close and he has long Covid and is even iller than I am; this is basically the state of my family, I get cancer and I'm still not the person most in need of help! My DD has just gone away to university, she was useful in giving me lifts, but I never wanted to put too much pressure on her, she's had a pretty difficult time too and I wanted her to be able to go away to university without excessive anxiety about me.

I am lucky enough I have two very close friends who live near me and have been absolutely fantastic, coming to appointments and giving me lifts, and another who stayed for a few days after my hysterectomy, but it's still have to juggle around their other commitments, they have other people who are more of a priority, and I hate having to ask for a favour after favour that it's quite difficult to return at the moment, I know not everyone's partners are great throughout this journey, but I don't think friends are the same as having somebody with you every step of the way.

I've never gone out of the way to date, but always said if I meet somebody then a relationship would be nice, I just very rarely meet anyone who I actually like in that way. It's also hard financially, I'm self-employed and I don't want to run my savings down to nothing or lose my business during this process, and there's nobody else bringing money into the house, so I'm trying to keep on working. At least some things are going to have got a lot cheaper since DD has left, and because my business was badly affected by Covid she is at least getting the full loan because my income drastically reduced those two years (and obviously again this year!)

I'm trying to think of some upsides to finish on a positive ... at least I don't have an unsupportive partner who I want to leave, as one of my cancer friends does, and I have always been independent!

Great news about your PET scan @AGreatUsername

@thereisonlyoneofme @Fantasea I am sorry your numbers are up. It’s really just so very worrying isn’t it. I really hope it’s just a blip for you both.

I am wondering why exactly my CA125 has remained so high. Lots of people seem to drop down into the normal range post surgery but mine seems to be so sensitive and so slow to go downwards. Why would it still be so high if there’s no cancer? Is it maybe an unreliable marker while undergoing chemo? My body is undergoing such huge physical trauma every 3 weeks why wouldn’t it be inflamed etc. I don’t know. Guess I’m trying to make sense of why the markers stay so high for some people with no sign of disease.

I am very very lucky that I have a wonderful husband. This has actually brought us a lot closer after a rocky start where we were both dealing with it in very different ways. I do sometimes find it hard to have to also take his feelings into account when I feel this is mainly about me, but overall he is my absolute rock and I am very fortunate. If he wasn’t around no way could I be bothered with meeting someone else.

@thereisonlyoneofme your new friend must appreciate you for your lovely personality although you are probably being harsh on yourself. It is hard to love our bodies after the battering they have been through. I don’t think you should rule out a friendship with him. Shouldn’t he be allowed to make the choice for himself? None of us know what the future holds and who is to say that you will go first? Every time I wave DH out of the door on his bike I know he may get knocked down by a careless driver. He has got me through the last few ghastly years with his stupid jokes and endless cake and his kindness. We were discussing the demise of our sex life and planning how we will resuscitate it but I can’t see that happening any time soon. Why not have a frank discussion about what is ahead and see what he says? Worst case is he agrees with you and backs away but you are no worse off than you are now.

@Chocolateismyfavourite hope things are easing a bit. Keep drinking! This too will pass xx

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So sorry for everyone having a hard time right now.

On relationships, this is a big adjustment for us - my DH was diagnosed with Early Onset PD about 18 months ago, and had had quite difficult symptoms for a while before that. I instantly snapped into carer mode and was very focused on taking pressure off him, and took on too much in retrospect. I was also - if I'm very honest - a little resentful of how much his illness constrained any conversations about nice things in the future, like moving house when our DDs leave home or more adventurous travel (everything was hedged around with 'if you're well enough'...). In a funny kind of way maybe this is a good reset for us - we both need each other's support, and both of us have conditions that cast a shadow over the future. (Sorry - that's probably not helpful for anyone else, but a useful insight for me that I've only just crystallised.) But to people going through this without someone by their side - it must be a lonely road at times.

Well Im beginning to think Ive become invisible. No phone call last week from consultant (mine has left but someone should have stepped in) now I should have had a phone review to release my next months meds and it hasnt happened. Managed to get through to someone, who said I wasnt on the list for a call, and would have to ring me back. Not done so as yet. Been stressing out about this for several days as will get blood results as well(hopefully) Things definitely gone to pot lately at my hospital, theyve been god up till now. Meds run out tomorrow !

@SierraSapphire I hear you on caring for your Mum and doing that alone when you have cancer. Mine is also nearly 90, lives independently in that she doesn't need personal care and cooks (sort of) for herself, but needs almost daily help with lifts, food shopping, sorting out admin and workmen, turning on her oven/boiler etc.. My DD26 lives currently lives with me until she and her bf move in together next summer. I really try not to burden her with my worries, she's entitled to enjoy her own life and has had to make too many compromises already with me being a single parent. She recently suggested I 'get a bf' which hadn't occurred to me and I'm not sure how that would work, the only men I talk to currently are the Tesco delivery drivers! It's made think though that even if I were interested in dating, at what point would it be appropriate to raise the big C issue?

@thereisonlyoneofme any news yet? It's bad enough dealing with the stress of the monthly blood results and getting your meds in time without having to worry about getting the actual phone appointment. Really hoping you got your call in the end and results are good.

Apologies for all the questions. My next appointment is for, according to the letter sentinel lymph node injection and scan on the day before my surgery, I did ask at my appointment today (to have my LOCalizer wire free guidance gizmo installed) and I know it's an injection of dye and the purpose, but I'm not clear what the scan part involves and to be honest I just wanted to get out of there and go home today so I didn't hang around to ask any more questions.

I'm thinking it's probably no worse that the procedure today and I'll be fine to go on my own and drive home ??

@MrsMontyD I think it’s a tracer dye they use to show lymph nodes that might need removing. If it comes back clear they won’t remove the nodes.

From what I've understood it's too identity the sentinel nodes connected to the cancer, they'll take them out during my surgery and biopsy them, if that comes back clear I shouldn't need further surgery and should need radiotherapy rather than chemotherapy, which is the current treatment plan.

I'm just not sure what the procedure involves apart from an injection.

@MrsMontyD The injection is radioactive, you should get it about 1hr-2hrs before the scan to give time to work.
Scan itself is just an ultrasound so no sedation or pain or anything.
Hope your nodes are clear.

Thanks, that's really helpful, I'll take a book and my knitting sounds like I'll be sitting around a while.