Cancer support thread # 75 - come on in!

[Bloodybridget]

This is the new 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, there are other threads on this topic - this one is for cancer patients ourselves.

Hello.
It's been a while...
Things here are still uncertain...drs have no idea whats wrong with my eye so just waiting for another scan...but covid. Due last month so month late already.
BoF I'm so very sorry to hear your latest update. I'm thinking of you x
Is hippiechick still around? We swopped addresses and I lost hers :(
Love to all x

Hi @yoikes! I'm still a bit of a newbie here so can't help I'm afraid.

I'm going to have a whinge. Feeling a bit down tonight and rather sorry for myself. Ah you know, all the emotions.

I'll keep this short because it's bloody boring and stupid.

My HCP friend was brilliant and cheered me up no end. One of the things she asked me for was copies of my notes from the GP and the hospital.

I got the GP's notes today and boy did that make so many things clear!

In a nutshell: the GP referred me to the 'new' hospital asking for a second opinion! Not just asking for me to have chemotherapy there.

The 'new' hospital looked at my notes and said hey, no second opinion necessary, this is bog standard bowel cancer. And we're not going to offer her chemo because we have a long waiting list and she's much better off getting it quickly at 'old' hospital.

However, they didn't tell me this. They told the oncologist and she called me BEFORE my appointment at 'new' hospital and said 'old hospital don't want to treat you because your cancer is so standard'.

I was due for my appointments at 'new' hospital in a few hours, I was tearful and confused, I said speak to my GP, I don't know anything about this.

She spoke to the GP and said I was against having chemotherapy!

The GP wrote in my notes "I'll see if I can convince her and get things back on the rails"!!

After our conversation (the one where he rang me and said, "I'm calling to get some clarity about what's going on") he wrote in my notes that the main problem was my social anxiety, I had taken offence because I thought that two people at the hospital had been rude to me ("in her perception", he wrote) and I said to him "the doctors have to decide what's best for me, I'm just an [occupation] and know nothing about medical matters"!

I did in fact say, "I'm not a doctor, I'm an [occupation]" when I was completely sick of him asking me what I wanted to do, but I certainly didn't say I'm "just" an [occupation]! The cheek!

Anyway, if you're still with me: they've somehow got into their heads that I'm scared of having chemotherapy and therefore asked for a second opinion hoping I wouldn't have to have it! And that I resisted all attempts to book chemo because I was scared, and not because I was waiting to hear what 'new' hospital said and trying to take care of one thing at a time.

And instead of calling me and saying, "Lucy, [oncologist] says you're nervous about chemo, can you tell me a bit about that?" he bloody asked me for clarity!

I hate them both, I'm so pissed off!

Oh my goodness that was long. Bit embarrassing. Might be useful if anyone can't sleep though

@LucyWarlowsRightHand

How infuriating! You don't sound as if you have social anxiety to me. Does your GP know you well? Could something have been lost in translation?

Re chemo, you don't happen to be stage 2, do you? It seems to be a grey area whether to do chemo or not. Some docs say yes, some no. Very controversial. My MDT said it was up to me to decide. I asked my surgeon what he would advise, given my age and not wanting to lose my independence, have to be looked after by dcs, and all that. He said if it was only a small percentage of gain, in terms of 5 yr survival, under 5%, then probably not. When I saw the oncs, and told them this, they tutted and said, 'He shouldn't have said that'. But first onc admitted it would prob be only 2-3 % difference. Second one said more than 5%.

So basically it was up to me, except when I looked as if I was going to say No, it wasn't up to me at all and they brought out the big guns and I said Yes. Who am I to argue with an oncologist? But why leave it up to me in the first place?

Might not be the same with you at all, it's just that what you wrote rang a bell.

But stuff it. Not worth the headspace. The important thing now is to start chemo at old hospital. Get ex to set them straight and fix up first appointment. Btw - I've lost track of when you had surgery, but I was told there should be a 12 week gap between surgery and starting chemo, so don't worry about having lost time.

I do have a diagnosis of social anxiety! That's part of what's so infuriating - even people with no social anxiety can get upset when talking to unsympathetic staff! He basically just decided that I'd got the hump with the staff because I have social anxiety, not because of what actually happened. (I have had extensive therapy and worked very hard and most people wouldn't guess I have it, BTW, but it rears its head at times.)

I have stage 3a with lymph node involvement, chemo will reduce the chance of recurrence by 5 to 10%. I've never been in any doubt that I was going to have chemo, the oncologist just got that into her head and told the doctor, who assumed it was true and rang me to convince me otherwise.

Of course what he really did was confuse and upset me still further, because what I was stressed about was that all my appointments kept getting cancelled and nobody would give me any answers. And the oncologist and the GP called me and said that chemo was really important and needed to start asap. Totally bewildering. Why nobody actually attempted to address my supposed fear of chemo, I have no idea.

I'm extremely impressed that you managed to get through my post BTW .

Ex has been amazing through all this and been on the phone to every man and his dog. All Wednesday afternoon for example.

My surgery was 4 weeks ago, and this has been such an awful week with no news from anyone, appointments being cancelled left, right and centre, and then those calls telling me how important it was to start chemo right away. I've cried so much this week, been SO confused.

The hospital planning department is apparently going to call me Monday (probably) with the date of the first IV chemo session. I'm to go and get the prescription for the tablets on Monday.

Anyway. I know I can feel free to talk about myself here but I don't want to fill up the thread with lots of negative talk. Although it's been frustrating and upsetting to read my notes, at least I now know exactly what was going on. I would like them to learn the lesson of speaking to a patient directly about a presumed issue, and not just trying to deal with the problem without actually naming it. Whether they do that or not is up to them, but I will need to write a letter of complaint. I hate them for that, but I need to do it for myself.

I'll try to keep the rest of my ramblings on this to myself, and focus on the future.

@LucyWarlowsRightHand sending you a big hug. Social anxiety or not, having chemo is scary! Cancer is fucking scary - whatever stage you're at.

I don't really have any helpful advice, other than making sure you're taking someone to appointments with you or sitting on telephone appointments. Docs might behave themselves if you've an advocate with you. X

lucy
That's horrendous!

@LucyWarlowsRightHand - how utterly crap. Glad you’re now sorted to start chemo. I wavered between wanting to get on with it, and resenting the fact that I’d just started feeling normal after surgery (mine started after 5 weeks), but - as I said before - capecitabine has been kind to me, so hoping so much for the same for you.

And I think we would say that you don’t have keep your ramblings ( not that they are at all rambly) to yourself. It sounds like an already horrible situation has been made so much harder. Vent!!

Thanks everyone.

@InOtterNews my HCP friend has been amazing and will be calling the oncologist on Monday. Obviously she isn't going to give a fellow professional a telling-off(!), but she'll probably be listened to more than I have been.

I was going to be not very nice and share a photo of the great view I had from my hospital room when I had surgery, but given all the above info I'd better not give any more identifying information, lest they set the lawyers on me or something. Rest assured it was a lovely view .

@yoikes if you tag hippiechick she might get have notifications turned on and she'll get an email.

@Lizdeflores and @Starmer I'm so sorry that your stoma nurses have been rubbish. I didn't need a stoma in the end, but I saw the nurse before my bowel operation and she was a classic example of someone who's really amazing at her job. She explained everything to me like she'd never done it before (rather than a minimum of several times a week), gave me so much practical info, I learned so much and came out of there thinking ok, if this is necessary then I can handle it. Not that it's much use to you of course, but there are definitely great stoma nurses out there!

@LucyWarlowsRightHand I wrote a long-ish response to your story earlier and accidentally lost it - I'll just add to what others have said, that the whole rigmarole was shocking and you have every justification in complaining, tedious though it is to have to write a letter. And as Starmer said, this is the thread where we can all say what we want and need to, no apologies necessary!
@yoikes I don't think I've seen hippiechick here for a while - you could tag her or send a private message?

Hello everyone and sorry everything seems to be a bit s**t at the moment.

@InOtterNews I’m sorry about the view (can we summon Banksy?) but glad everything is now underway.

@LucyWarlowsRightHand I’m sorry you are tangled in a bit of a web of others misunderstanding and hope all gets sorted soon. Hopefully your friend can advocate for you and the path ahead will be clearer for all. Having treatment underway I’m sure will help 💐

However I remain in awe of everyone on here and checking in helps me so much. I did get over the infection and just waiting for the last AC in a week. Ironically DH then got the same infection so I’ve been looking after him!

I also have the BRCA results - negative so I thought good news! But I’m now a real mutant and have the BARD1 (which seems to be a lesser version - great!) but also have TP53 (a real badass mutant?) so very confused. The TP53 is the reason for the triple positive breast cancer I think. I’ve been told my treatment plan now has to be revised. Has anyone any knowledge or experience of these pesky mutants? I hope you don’t mind me asking @KentishMama but do you mind if I ask where your testing is taking place? Private health care here doesn’t cover genetic tests or counselling and so it’s being done via Madrid at the moment but I would like to change this to London if possible? I’ll be back in SE London from next June hopefully.

💐 to everyone - we all deserve them!

@LucyWarlowsRightHand. What a bloody nightmare for you. So stressful. Good that there is plan to start your treatment.

Hi @ElaineMarieBenes, oh no, those pesky genes! I still don't have my results back because the lab in the US is apparently running behind because of storms. I'll chase on Monday. I also don't really know much about the individual genes and what they mean, as I have my head firmly in the sand about gene mutations (and it'll stay there until they tell me I have one!).
I'm also treated privately. I asked my oncologist about genetic testing because my grandmother, her mother and her aunt all had breast cancer. She was supportive and ordered the test once my insurance approved it. I had to come in for bloods, and then they sent it off. That's all I've done so far. I know that my treatment might change slightly if I have a gene fault, but the oncologist said the EC part of my chemo that starts on Monday would stay the same, they'd only alter the Paclitaxel part that comes in about eight weeks - likely to add Carboplatin.

@LucyWarlowsRightHand
Great you have a friend who can advocate for you! Maybe she can gently bang some heads together so that you don't have to deal with more rubbish like this.
Also we'll probably be chemo-ing at the same time, so we get to compare who has the worst hangover after each infusion!

In other news, I now have a port. It went in smoothly. Looks a bit bruised right now, but hopefully they can use it on Monday and it'll make life easier. Now I don't have to deal with comments about rubbish veins in my "good" arm every time they need bloods!

In slightly more worrying news my breast wound isn't healing amazingly. The surgeon used a suture technique that isn't used very often to make it look nicer but she didn't mention that it takes much longer to heal. It's a bit red and crusty and weepy and I worry it's infected. But I sent pictures to the surgeon and she says she's "happy with it". Hmmmmmmmmm.

Hey @KentishMama thank you so much for your quick reply and sincere apologies - I don’t know why but in my (befuddled) head I had decided you must also be in SE London and all genetic tests will be NHS! My family (although I didn’t know this until July this year) seems to have a whole genetics department allocated to them and the genetic counsellors have been great at forwarding stuff - but it’s nowhere near London and now I appear to be the only mutant (all the other family members are just BRCA2). I’ll take a step back and wait! My insurance does not cover gene stuff! For me I think the big change to the treatment plan will be removal of planned radiation (which I’m not bothered about !).

Good luck with your treatment and sorry the wound is taking a while to heal - but glad the long term look will be better for you 💐

@KentishMama - just to add I love my port! It really has made everything easier! Bit of bruising didn’t hold them back using the first time either!

Hello all! Just checking in... I've just had my penultimate chemo (15 of 16) this week and am tired so apologies for not back reading the entire thread.

I would highly recommend having a port fitted @KentishMama. I had AC x4 via cannula and my veins were really affected. Now 3 months later they are still bad and I'm having physio. Are you TN?

Sorry to hear of trials and tribulations of others

The port and I are already firm friends. Although I have exactly one bra with straps that don't sit on top of it, so ... first world problems to solve now! :)

@citybumpkin No, I'm ER and PR positive, HER2 negative. I get chemo thanks to horribly evil lymph nodes! I guess you have TNBC?

@KentishMama Yes, TNBC here. Lumpectomy, chemo then rads. No lymph nodes involved and stage 1. Its a hard slog but getting there. Chemo hasn't been as bad as I expected it to be. Drink lots of water/fluids. I tend to fast before each chemo. Not for days but just skip the meal before. Research has been done on fasting helping with side effects. Seems to work for me.

@citybumpkin I’ve been fasting too! My oncologist was up on all the research and supported this and so I’ve carried on! So far it seems to have helped (I take all the meds though as well!). Not sure how to carry on with the Taxol though? I’m so pleased you are nearly at the end - can’t wait to join!

@ElaineMarieBenes I've fasted throughout. Taxol has been far easier than the AC. However, I'm more tired by the afternoon now. I think thats the cummulative effect of chemo. I started at the end of April. I'm still managing a long walk with DD most days and still walk to/from the hospital. Fluids, fasting, good diet and exercise/being active seem to helped. How are you doing so far?

@citybumpkin I’m sticking to the exercise and very strict diet the Dr set for me. He is pleased so far - just one more AC and then the 12 Taxol treatments to go this year. I was going to fast the day before - is that what you do? I will also double check with what Dr advises on how to work on the weekly regime. I also try to remember to write down my daily fluid intake to ensure getting sufficient! It’s a full time job almost!

It’s all a bit of a slog but hey can’t give up! I still have all my body hair but just a few wisps on my head. I’m glad you found the taxol easier than the AC (and hope I do too).

@ElaineMarieBenes Your doctor sounds great! I only fast for the meal immediately before each chemo. I drink water/green tea during the infusion and then eat afterwards. Glad to hear you still have a wisp! I cold capped for the ACs. I started losing head and other body hair after the second AC. I gave up cold capping when starting the taxol as it was just too cold and giving me a sinus headache. My head hair is still clinging on and starting to regrow in the bald patches. Other body hair has regrown as well but lighter in colour and doesn't seem as fast growing as it once was. I lost my eyebrows/eyelashes near the start of taxol but they too are making attempts at regrowth. I've been told I could possibly lose all the regrowth after chemo so whoppeeee I get to lose it all over again!

Re the fluids, I just try to have 4 large cups of something in the morning, 4 in the afternoon and 2 in the evening. Anything else is a bonus!

I hope taxol treats you kindly!

Hello all
Can I ask for some support/hand hold/advice please?

Apologies this is going to be long, I have ankylosing spondylitis and have biological injections every two weeks - currently I am off this medication. I was on Cosentyx and kept telling my consultant that it wasn't working, finally (after 9 months), she added sulfasalazine to take, increasing dose, after 2 weeks of the sulfasalazine I had swollen lymph nodes and felt pretty rubbish, but put it down to the new medication, after a further week the lymph nodes were getting bigger (a colleague noticed one under my ear and said it needed checking). I contacted the consultant and was given an emergency appointment, this was 17th March, helpfully I wasn't told my appointment had been changed to a telephone conversation, but a different consultant did review me in clinic (turns out he was the Professor), I had bloods done, which were wonky, and told to stop all medication. The Prof ordered a drug change to Humira, I had 12 weeks off of all the medication and then started Humira, fortnightly, I administered three injections, and the day of the fourth injection 23/6, I had blood tests, I woke with swollen lymph nodes, under my ears, jaw, neck, and armpits, I contacted the rheumatoid team, but it was 24 hours before response. I had my bloods taken, and nothing amiss, I was then told to see my GP, who ran more blood tests the next day, again all normal for me, my consultant then requested further blood tests two days later, again all normal. I was then contacted to see a different consultant as an emergency, he examined me, confirming the swollen lymph nodes, more blood tests, again normal. I then had an ultrasound of my neck as a precaution, all normal on 22/7, then a CT-PET scan with radiation on 1/8.

The CT-PET scan showed a thyroid avid nodule. I subsequently had an ultrasound fine needle biopsy on the thyroid nodule two weeks ago.

My results were sent to my rheumatoid arthritis consultant as that's who ordered the CT-PET scan and then the follow up FNA.

My rheumatoid consultant was quite blunt when she phoned me with results last Mon 14/9 and said that the results are inconclusive and I am to expect the worst and she is referring me onto an Endocrinologist.

I can see the FNA results but they may as well be in gibberish as I don't understand them.

The consultant has referred me to the Endocrinologist under the two week pathway. I have not heard from anyone yet, and I will chase it up tomorrow as it will be 7 days into the 2 week period.

I'm going out of my mind with worry.

If you have managed to get this far, thank you.