Cancer support thread #72 - come in, we're here for you

[Bloodybridget]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread is here

Current members, please do introduce yourselves

Well done on your London Marathon entry iVampire. Not annoying at all just awe inspiring.

@Zorgothslugofdoom things seem to be progressing swiftly for you. You are only three weeks into diagnosis and I'm not surprised you find it tough telling people. I had to hold back even from close friends until I had told adult DC. Then I told one or two people but felt very strongly that I didn't want everyone to know. After 3 or 4 weeks when I had got my head round it I then wanted everyone to know though preferably without me telling them face to face. I think it's hard when people are upset and feel sorry for you. If you are having chemo before surgery I suspect it will be a different regime to me as I had surgery first.

@SnowsInWater I'm sorry the pain from radiation is taking the shine off reaching the finishing line. A scan at the end would be most reassuring but I was told there would be no final scan so it's the same here in the UK. I guess for us all there will be forever the fear of recurrence.

@Bloodybridget hope you enjoy your venture out. It's easy to get cabin fever even if you're not well enough to go out. Don't know anything about neuropathy I'm afraid. What do the chemo staff advise?

@Brassica wow tennis, respect. How lovely to do something normal. I watch bakeoff with DS(21) and we try to have cake to eat while watching I agree the current series is slightly less gentle but I'm surprised how much I warm to Noel.

@meercat23 hope the cold is improving. When will you go back for the Herceptin?

@WTF99 We will need a picture of The Jumper

Hope I haven't missed anyone.

Well after snoozing all afternoon I was wide awake and wired at 2am, also nauseous so had a tablet. The anti sickness tablets have a sedative effect so I slept well after that. Feeling good today and so relieved about that. The sun came out and I walked up the lane which wore me out. Having awful problems with elderly mother at the moment. She lives alone and has had a lot of illnesses lately, 3am dashes over and A&E visits, and now she has CDiff. My sister and I normally share the burden but I can't help at the moment other than by phone. Feeling guilty.

iVampire go you! Not annoying at all, I think it's brilliant to be entering for a marathon!
Skap I reported the neuropathy to the registrar I saw last week; she said they could reduce the dose of the chemo drugs on Friday, or I could have the usual dose and see if it was worse afterwards. So I thought I'd get the full blast, but as it is quite bad now I reckon I'll ask them to cut down for the last one, because it may not get any better.
I just got a bit of good news, that a grant application I made on behalf of the choir I sing with was successful! Feeling very pleased indeed!

Bridget I have some neuropathy in my toes and fingers. Worse in my fingers but not too bad but it does make me even more clumsy that usual. Thw oncologist says it can take months to improve but in some cases does not improve much at all. They decided to stop me at 9 Paclitaxel sessions instead of the possible 12 they had mentioned but I was only getting the Paclitaxel because they wanted me to have Herceptin so not too worried. Chemo finished at the beginning of July and not a great deal better yet. If yours is affecting your walking then I too would be thinking seriously about cutting the dose especially if it is the last one.

Skap I will have the Herceptin next Wednesday but I also had to cancel with the oncologist and now he is away for a few weeks but it is only routine and I am not waiting for results or plans so no real problem.

Thanks to all who have asked. I am feeling a lot better.

Thanks meercat. Glad you are feeling better!

Hiya, I popped on here last week, I disappeared for a few days as I wanted to ignore what I was feeling. This ended up with me being a crying wreck on Monday. Feeling positive now.
I have my appointment for tests in Tuesday 15th. Does anybody know how long results for anything comes back?

Hi Iputthe...
Your appointment is for scan and maybe biopsy of a lump on the back of your neck....is that right? And you're still under your GP.....not referred to a specialist service?
I would be asking the person doing the scan/biopsy how soon the results will be with your GP and then make an appointment with him/her to coincide with that.

One stop breast clinics, for instance, sometimes give you an indication straight away of what they're thinking, though typically you can wait up to 2 weeks for confirmation of results, as tests need to be reported on and then maybe discussed in a specialist team meeting. It doesn't sound like you're in that kind of arena though as it's your GP requesting the tests.

Sorry.....that s probably confusing and unhelpful! In short....ask on the day when your GP will have the results and I would say expect up to 2 weeks but could be a lot quicker. Hope you're ok.....waiting is the pits.

I have a whole 24 hours on my own now as my chap just left and I have no visitors until tomorrow morning. My son usually comes over on a Thursday evening but he was here on Tuesday instead as his working pattern has changed. I had 3 visitors that day as well.....flippin typical! At least I'm not at risk of picking up bugs......I really don't want another A&E visit and it's getting close to low neutrophils time. My visitor tomorrow is under strict instructions not to come if in any way under the weather!

Better get knitting then if you lot want a picture

trumpton are you ok? Haven't heard from you in a while.

Iput I think we have all been in that "wanting to ignore what I am feeling" situation. Finding a worryting lump or symptom is scary in the extreme and as WTF said, waiting is the pits. I was lucky in that all of my results etc were super quick but at the time it still felt like an eternity. It is OK to share your feelings and if you don't want to do that in real life you can always do it here and find people who know just what you are feeling.

Hi everybody, just a quick question about reoccurring breast cancer .
I was treated a year ago and had a lumpectomy , all good and on 5 yrs of letrozole. My annual mammogram was 2 weeks ago and they want me back for a 2nd together with ultrasound as they just want to check something that looks different , it could scar tissue but I wondered how common this is . Has anyone else had experience of reoccurrence of breast cancer so soon after treatment ?

It could be scar tissue

Iputthe good advice from WTF and meercat, an anxious time for you, keep posting here
WTF hope you keep free of infections and don't feel lonely!
I am having a bit of a grim time, coughing loads, feet painful so I actually took paracetamol in the night, and then had two violent episodes of diarrhoea at 3 am and 5 am - thank god for showers and washing machines is all I can say! And also that DP sleeps through anything, I was tempted to wake her (just for comfort, not practical assistance!) but resisted. And today I have no voice, so had to get her to call the chemo hotline for me - I rang about the cough Tuesday morning, asked if I should take ABs, was told someone from the day shift would ring back but no-one did, now apparently the doctor's advice was to take them but I didn't know! They are checking with doc again now . . Tired and fed up but temperature normal, and hopefully won't have recurrence of Dire Rear.
OK that was a big moan
and I know I don't have to apologise for it - thanks for being here everyone, and good wishes to all.

So sorry to post when others are having to cope with much more than I have ...

@Bloodybridget oh you poor thing. Temperature or not it sounds like some kind of infection. I bet your DP doesn't want you to be quietly heroic on your own in the night either - I'd have woken her up . Ring back and pester the helpline if you don't hear back soon.

@Ineedabiscuit I suspect with all cancers there is a risk of recurrence and that is why we are monitored. Unfortunately as you will no from your experience the waiting for tests and results is excruciating. Fingers crossed it is just scar tissue, and don't worry about posting here for this we all know how hard it is not knowing.

@WTF99 It's a long day when you are home alone and can't do much. Does your son live far away? Does he phone for a chat? I have one at home who has just graduated and is looking for grad jobs while working in the local supermarket. The other is 23 and lives about 40 minutes away. He's a teacher so doesn't have many free hours in the day but came over on Tuesday to see me after my first treatment.

Ineedabiscuit first rule of this thread: never apologise for posting! We all have our own issues and anxieties, there will always be someone "worse off" but we all matter and all deserve support!

Thank you , appreciate your reply Skap and send my good wishes and thoughts to you all .
🌺

@WTF99
So kind of you to ask . Been waiting for news since 29th September when I was passed over to Liverpool .
Been ok but hit a flat patch and hunkered down and lurked .
Letter today from Liverpool giving me appt with plastic surgeon on 30th October , no mention of surgeon who who do the mastectomy .
I rang breast clinic and they said they had spoken just that very minute to Liverpool ( that’s why I got the engaged signal ) and are try to set up a joint meeting on 23rd with the two surgeons. So far so good .
Then I was told they might not operate until December and are not decided whether to do chemo and Herceptin before or after or indeed at all.....the oncologist wants to weigh up whether to do it at all .
I am in tears over the whole thing . I had my mammogram in June and whist I know these things take time this just seems so fucking vague at the moment.

And, of course , I am terrified not to have chemo and Herceptin as HER2+ .
Equally terrified to have it but at least I would know it’s all mopped up , , from being told it’s a slight area of calcification grade 0 and then over the months to be told it’s more and invasive and Grade 2

Trumpton I know I don't have all of the details and I shoudn't judge or probably even pass an opinion but I am going to anyway!! I think that is appalling. It is bad enough to have to wait for answers but to be waiting since June is not acceptable. The shifting plans can sometimes be par for the course but they should be keeping you fully and quickly involved about the changes in thinking, the reasons for them and most of all the timelines.

No wonder you are upset. I would be pushing back at them to sort out some clarity for you asap. Do you think it is because there are doctors in different places involved? That shouldn't matter to any great extent though. Would it be worth asking you GP to push a bit for you?

It is absolutely no help to you at all but I am feeling absolutely furious on your behalf. Meanwhile for you.

@meercat .
Thank you ,I thought I was being unreasonable . I think there is a problem with care being shared with Liverpool .
I can have a straight forward mastectomy here but need to be away for mastectomy with reconstruction as no plastic surgeon here.

@Trumpton Agree with Meercat that's awful. While I can understand the surgeons wanting to liaise surely the oncologist gets the final say on Chemo and Herceptin and as you are HER2+ I can understand your concern. Have you seen the oncologist yourself? Not a daft question because I was aware that my oncologist was involved from the first MDT even though I didn't see him until my surgery was all finished. Could you push for appointment to discuss the none surgical treatment? Hard as it is I have learned that you have to advocate for yourself with the NHS.

No I haven’t seen the Oncologist yet .we are hoping to get that set up soon . If Liverpool want to wait until December then there is a thought of chemo before then .
I think the next MDT meeting is Tuesday so won’t have any news until at least next Wednesday .

Thank you @WTF99 yes it is lump on neck. I have looked into it (yes, I know google is not my friend) but i don't seem to have any other symptoms. I am taking this as a positive.

@meercat23 I do find it hard to speak to people in rl. I have spoken to my friend, but her nan is terminal, so she has her own worries. She has been fantastic though. I sent my mum a text yesterday to tell her my appointment date. She is clearly not coping. She replied with just 'xx' I think she is trying to ignore it too. I get it, if one of my 3 little girls were needing this test then I would be trying to find a way to bury my head.

I have been reading all of your posts. This group is clearly supportive of each other. I haven't replied to anybody though as I really don't want to be insulting going on as if I know what you are going through. What reading this thread though has done is given me a realistic view of what may or may not be.

Oh Trumpton, that is bad management, I'm sorry. You shouldn't have to push and make a fuss to get an acceptable treatment plan in place, but it looks like you'll have to. I wonder is there someone who could take up the cudgels on your behalf - would it be worth discussing with your GP? Is there a doctor at your practice who has a particular interest in oncology?

I spent a few hours in A&E today; advice from the oncology hotline was to go and get checked out. They did blood tests and a chest X-ray; nothing much to worry about but they sent me home with antibiotics to prevent anything more serious from developing. As a chemo patient I was whisked into a cubicle immediately, all very calm and comfortable.

I haven’t seen my GP since this all started but I do believe that both my consultant and my breast care nurse are doing all they can .
It just seems to be the penalty for living offshore with a population of 85,000. The size of a small town like Chester . We expect to have to travel and lease with reciprocal health care .