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 keep ending up in the low odds bin - nice turn of phrase @HerbalRefreshment - I'll see you in there. I've heard so many "This is unusual" "We don't see this often" "This only happens once or twice a year". Even before I was diagnosed I remember writing a list and it had about 12 reasons why it was unlikely to be cancer and only one reason why it might be, yet here I am! It's got to be somebody I suppose, and I also think why not me instead of why me, but it doesn't really make it any less scary.

It’s a mass and needs urgent biopsy they will contact my gp. He also said it could be secondary to something so now I can’t stop panicking. How can that be? He was lost for words so I just left I mean what can he say?

Goodness @EachandEveryone sorry to see you on this board. Our paths normally cross on cat related things. I'm more of a lurker on here now having had breast cancer last year. My active treatment finished in February.
I hope you get your biopsy soon. This is a very supportive place so people will hold your hand while you're waiting to find out what's going on.

hi There!😂 its weird finding myself here and I’m glad you are doing so well. I just keep thinking why groin? I’m hoping it’s a really really big gland or something. I guess I’ll know in a couple of weeks. I won’t come back here until then x

@EachandEveryone you’re very welcome to stay and chat to us while you wait! We know what this bit is like. Unfortunately the next few weeks will be rubbish for you as the waiting is just soul destroying but please feel free to take part and we will do our best to prop you up.

Aargh I’m freaked out now.
I went in for blood this morning from my port and it is all clogged up with something that looks like butter! Nobody knows why and never seen it before and they went on about clots and neck swelling and chest pains. I’ve got to go back on Monday to have some Dynorod cleaner put down it to see if they can get it working before Tuesdays chemotherapy. @MrsPnut I am trying so hard to stay below the radar but the Lows Odds Bin is calling again. Great turn of phrase @HerbalRefreshment and totally sums it up.

@EachandEveryone welcome to the place nobody wants to be. You may find you need us more while you wait as it is terrifying and your imagination will drive you crazy. Keep busy and distracted if you can, and maybe use a Calm app or something if you get panicky. If it turns out to be a hernia we will all celebrate with you

<< Waves to everybody else >>
Top x

🤣 at the Dynorod cleaner @TopOfTheCliff I guess if it's not painful etc then it's likely to be something low-key & will hopefully get sorted. I'm hoping this for my lower leg which has been numb for days after my recon op. I'm pretty sure they gave me too tight surgery stockings as comparing to last year's post-mastectomy ones they're three sizes smaller! Don't think I've lost that much weight from my shins!

Thanks for asking about my recovery @HerbalRefreshment I could've done with stronger pain meds at times but they make me vom so I've been soldiering on with just paracetamol/ibrupofen. Had dressings off y'day so later today will pluck up the courage to check out the scars. I think I've got a ready-made Halloween costume on my front 😯 😬

@HerbalRefreshment in defence of Registrars they are doctors training in a speciality who have been qualified doctors for at least four or five years and are taking specialist exams to become a consultant. My DD is one in Oncology and has empathy in spades. Some are rude and uncaring just like any walk of life but most are just inexperienced and have to check things with the consultant.

@HauntedDishcloth I still can't really look at my bellybutton and its been almost a year!

@TopOfTheCliff Thanks for explaining that better - its not a medical role I've seen in the US, where the term is commonly used to refer to the admin/finance at a university. So I was very confused to be confronted with one my first time in the hospital as they didn't explain their role, their name, or what they had to do with my care. Nor did the next two after that. And I really only dealt with registrars in that specific teaching hospital and after I switched I haven't seen one since. Perhaps it was the teaching aspect as to why there were more at the first hospital.

@TopOfTheCliff really sorry to read that- and that you’ve got to wait till Monday.
@EachandEveryone the hardest bit is not knowing….. please feel free to vent on here. We get it.

Just had upsetting visit for CT scan , 6 monthly for OC. My kidney function is not good enough for them to do it. I have had reduced kidney function for a few years but its never affected me, I never knew i Had it. Really worried now if I cant have CT scans (its the contrast) how will they be able to tell when it comes back. Quite scared, about the worsening kidney situation as well.

Just read Tops update,sorry to hear about your strange clogging !

Hi everyone, it's been a few weeks, hope you're all ok, tops sorry to read bout what happened Monday hope they sort it for you.
I've had three rounds of chemo, the first week ( had carbo and picxlataxle) I'd say I was wired and tired (from the steroids) the second week I was full of energy, you'd have never have known I'd had chemo ( just had picxlataxle the second week and the same the third) this third week( I have it on a Monday), I've been very tired on and off and a bit shakey. What's getting to me is a sore mid and upper back. I had a achey lower back and when I mentioned it they said it was the injections I'm giving myself for three days a week. The day after I spoke to them, this sore back business is getting to me, nothing is helping it, yoga, bath, hot water bottle, voltarol get, painkillers etc you get the idea. I didn't really want to mention it to them because I don't want them to stop of change the dates of the chemo. Stupid I know. I think I will have to though.

Have the added 'stress' of a ECG on the day I have my bloods and after my chemo session as well, and if they don't like the look of it I'm having the open heart surgery to remove the tumor in there. Wich I don't want, at the mo, I want to carry on with the chemo, it's a hold your breath kind of situation every Friday and Monday while they check it out and tell me I can go.

Oh @TopOfTheCliff how rubbish, I think you may be vying for world’s unluckiest patient. Hopefully a bit of flushing might make it behave.
@HerbalRefreshment I am definitely a member of the low odds bin, so often people say “I’ve not seen that before” when it comes to telling them the things that happened to me. It is a theme from consultant
letters.

Welcome to newcomers and commiserations to those having a rough time.

I had dental surgery last weeksI I can start zolendronic infusions, postponed from Feb due to the hole in my chest. I had a PET scan yesterday and am bumbling along with counselling and MLD. My hand has now swollen massively and I am struggling to get it back down, I hate wearing my day sleeve but my night sleeve is fine.
I’ve started crocheting again which might be making it worse but I need to keep myself busy whilst sitting around watching DD2 play her various sports.

@thereisonlyoneofme oh dear, that's not what you want when you arrive for a CT scan, I'm really sorry to hear that. Do you have an oncology appointment where you can ask what they plan to do?

Fantasea I have a phone appointment with a consultant in about 10 days. My last consultant left and new one being appointed so I expect the usual thing will happen, they wont have read my notes ! I really need to speak to a GP about my kidneys but have no hope of getting an appointment, No 29 in the queue and then all appointments are taken is the usual procedure. The GP still hasnt contacted me about my echocardiogram which I had about 2 months ago. She had the results through two days after I had the scan.
I dont know why the radiographer couldnt have done the CT without contrast, didnt think to ask till I was on my way home. I am so fed up with the constant round of appointments,try to get an appointment, trying to get through to someone to track down results etc. I had a lovely 4 days away on acruise and totally de stressed, totally wound up again now !

I feel like the worst daughter in the world today, my mum called me at 7am with heart palpitations and numb legs and feeling weird, she called the paramedics and I went over, they checked her out and phoned the hospital who thought she needed to be brought in as she'd had an ambulance called by 111 the week before for similar. The ambulance couldn't bring her in because she was able to walk so I had to take her in (about a 40 minute drive each way). My chemo was cancelled last week because my white blood cells were not up to it and I am anaemic, so I was supposed to be resting this weekend. Chemo should be going ahead this week, but that means I've somehow got to fit a whole weeks work into a chemo week now so I'm already stressed (can't move it without losing work / a client because of deadlines, and I'm self-employed). This has been a very regular occurrence over the last eight or so years having to go into hospital in an emergency with one or other of my parents and I've put my business and other parts of my life on hold at times to look after them. I didn't think sitting in A&E for hours was the best thing that I could do in the situation, I took her in and waited for triage, but because my mum is so vulnerable I couldn't just leave her in the waiting room alone after that, I spoke to a nurse who said she couldn't be left because she was confused, and couldn't I find somebody else to be with her? I couldn't - my brother is ill and even when not ill fairly useless so it's only me. I basically just burst into tears (not in front of my mum!), then they found somewhere for her to sit, but I felt terrible leaving her, she cried, but I just couldn't spend the afternoon there with her asking me the same questions over and over again. I've got go back and pick her up anyway. She's low in sodium apparently so we're back on the A&E - GP merry-go-round.

Honestly, I have (had?) cancer but still feel completely crap because I put myself first.

@SierraSapphire Sorry to hear about your mum. My mum is main carer for my Nan who 97 with dementia. Until she went into a care home last summer her life was chaos, constant calls and having to drop things to sort her out. It still is to some extent as nan phones most days panicked about how she’ll get home or where she is etc.

But. You MUST put yourself first sometimes. You have to. If you don’t you will breakdown and be no use to yourself or them. You need to be able to function and pay the bills and just live, you don’t need to feel guilty for that. Your mum would understand I am sure, if she weren’t so old and vulnerable. You do a fantastic job of running around and caring your mum and daughter, be kind to yourself too.

(Not to say your mum doesn’t understand, more than in my nans case I know age and dementia have made her a lot more self focussed than she ever would have been when she was “really herself”)

Sorry you've had that rubbish & worrying experience @SierraSapphire I agree with @AGreatUsername that if ever there's a time to be selfish & look after yourself more, it's now. I hope there's no more drama & your chemo week will go smoothly.

Thanks both. Back home now and trying to make the most of the evening. As often seems to be the case, the issue was caused by medication she was given a few weeks ago for something else. She's got layers of medication to deal with the side effects of other medication! God knows how she manages to take all of them. Its so difficult to look after myself though when there's no one else to look after her. If I'd thought it was life threatening I would have stayed, but she has had so many things that mimic something life threatening but aren't. My brother thinks she might be immortal!

@thereisonlyoneofme that all sounds so unsatisfactory and I can totally understand your frustration. It really shouldn't be that a cancer patient can't speak to a GP as all the appointments are gone. At the hospital, they always say 'ask your GP for that'. I've also been halfway home from an appointment and then been kicking myself about something I should have asked for. I find the whole 'living with cancer' just relentless and currently am feeling quite low about the whole situation. I have my monthly chemo review with the dreaded CA125 results plus my scan looming and it's all I can think of.

@SierraSapphire

'Its so difficult to look after myself though when there's no one else to look after her.'

This sums up my situation with my elderly mother, who lives locally and thinks she lives independently but wouldn't be able to manage without me and adult DD. I have a sister an hour away who rarely even visits. Last week was the week from hell, every single day she was ringing or emailing me with her latest disaster and by Thursday I was tearful with exhaustion. It really isn't fair. We all should be able to prioritise our own health and have the fact that we're having cancer treatment respected and allowances made but it never feels like it. You are juggling work on top of all of this so you must be run absolutely ragged. I really do hope you're able to have your chemo this week.

I have a cervical smear on Tuesday.
Am shit scared basically.

@Fantasea Yeah my adult (just) DD used to help but she's just gone to uni. My DM is grateful and tries not to bother me, but she refuses to get carers even though I begged her to, especially when she said she'd do anything to help me when I got cancer, so if anything needs fixing (including her!) it's down to me, however inconvenient.

Good luck to everyone waiting for tests, results etc. I'm expecting genetic tests back anytime now, it's a horrible, stressful time