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.

@Starmer indeed you make a good point there about phrasing and tone (and no-one could ever accuse me of being excessively positive!)

It is quite an education being on a thread where people are at all stages with different cancers.

Dh is well just now, thank you - just waiting for new dates to try ops again.

@Starmer. 👍🏻

@Starmer I hope you start to feel brighter soon.

I feel that I do have to cling on to hope even if my expectations have had to change with my diagnosis. So that's what I wanted to share there's always going to be something to be hopeful about. I have large hopes ,continued good response to treatment, lottery win . I also have a series of smaller hopes like;seeing the end of this bloody pandemic and going out for a coffee with a friend.

@Acinonyx2 I agree it’s an education. I am enduring a very fierce Yet curative course of chemotherapy treatment for breast cancer which has been hard to endure but is almost done and things are looking good. I could be feeling sorry for myself with all the side effects and the destruction of my life this year. Instead I am grateful that I have a chance to get rid of this disease and look forward to resuming life again.

Initially just thinking about having a cancer diagnosis is too much but gradually you get accustomed to the idea, and address the possibility of secondaries and recurrence. This thread has taught me that all things can be accepted and dealt with and there is treatment and hope for us all. I am grateful for those with more advanced disease for sharing their struggles. If I am fated to be in that situation further down the line I hope I can be as gracious. Meanwhile there is cake downstairs so I am going to hop down in search of it!
Love to all
Top

Starmer you are completely right. Apologies for my sloppy language and apologies to any one i may have upset. After speaking to a friend I just felt such despair and should have paused to think before typing. Xx

@iamsodonewith2020 I remember the blind fear of not knowing and early diagnosis it's not a great place to be. My ova cancer was discovered during a scan on my bladder/kidneys. During that a mass was seen and I was sent for a gynea consult and biopsy about 2 weeks later. After confirmed diagnosis I had another consult with the oncologist before starting chemo. I'm not saying that your experience will be the same as mine but things do move quite fast. The initial scan was in April by June I had a diagnosis and a treatment plan. All my care has been NHS .
It's always worth remembering that this could still be anything ,a good G P is one who leaves nothing to chance x

Hello ladies

Just checking in really as I've been a bit wobbly this week (both physically and mentally). My transplant coordinator does think I've had a chest infection after all and she's pissed off that they didn't give me antibiotics last week. My bloods/chest X-ray were clear when I was there - but I felt even more ropey at the weekend. Obvs I'm now feeling better(ish) now and it's too late. My lungs feel like they want to burst every time I move at the moment

I'm seeing my consultant tomorrow for potentially my semi-discharge. So no more weekly bloods. Then PET sometime in December and then 100 days post transplant session in January. This is where all my mental wobbles are coming in. The what if's. What if it didn't work? What if I relapse sooner rather than later? Etc etc. I know I'm being irrational and I know these thoughts are completely normal. I think they just rear their ugly head when I'm feeling unwell/tired.

In other news I've had another bath and I have some taste returning (red peppers and peanut butter ice cream - not together) 😁

@Bloodybridget and @BitOfFun I hope you're starting to feel better.

@gillmoregirl welcome home! I hope you're taking it super easy

Sending love to all - whether you're mid-treatment or you're waiting on appointments/results

@InOtterNews sending you hug. I hope you feel better soon

Wobbling right now myself. Just had phone call from consultant. Was taken off guard a bit as wasn't expecting to hear for 2 weeks. 10 lymph nodes harvested cancer found in 1. T1. Early but stage three. Not sure what this means and too shocked to ask him. No spread to other organs or outside bowel wall. Chemo to start in next few weeks. Infusion and tablets. I can do this ... right???

I hope people are feeling as well as they can be, and I'm offering cakes all round.

My biopsy results are back from my vaginal cancer and it is a squamous cell cancer which is good news because it means they aren't linked. Hopefully breast biopsy results will be back by Monday and I have an appointment with the breast nurse in the afternoon.

My fantastic GP pulled out the stops for me yesterday and made a referral to a private oncologist after the gynaecology oncology team said they wouldn't do it. I've heard from the Oncologist's secretary this morning and have an appointment next Wednesday. She's also on the case of the two departments at my local hospital for all of my scans etc. I did tell her how unhelpful I'd found the Gynae team and especially the nurse. My GP gave me the results of my biopsy because the nurse wouldn't until it was discussed at MDT despite me telling them early on that I wanted to go private.

@gillmoregirl I'm glad you are home and if you want to talk to someone with a stoma then my friend has been blogging about it for a while www.sobadass.me She has ulcerative colitis but has had a stoma for quite a few years.

@InOtterNews Take care of yourself, and definitely enjoy the taste of food returning.

@Iamsodonewith2020 - not at all, I didn't mean to sound preachy. Hope you get the results soon - have you had the bloods done yet?

@MrsPnut - good they aren't linked, but still hard to get to get the result confirming it's cancer. Glad you have the oncology and breast appointments soon. Hope you can have a peaceful weekend.

@gillmoregirl - you can do this. When do you speak to the oncologist? They'll be able to explain it all. I think you will be on capecitabine like me - it's ok, but I'd recommend lots of hand / foot cream, and some cotton gloves!

@InOtterNews - hope you're feeling better. Wobbly days are horrid.

@TopOfTheCliff - your words resonated with me. Mostly I remember that my chemo is meant to be curative, and I can get through all the other crap (literally at times!) and feel grateful for that. And looking forward to those little things which used to be normal, like @Lizdeflores said. I will definitely have more coffees / drinks / outings with friends after all of this. It's easy to think "I really need to get the washing / ironing / chaos sorted tonight" and put things off, but post Covid and Cancer there will be no stopping my social life!

@MrsPnut I'm pleased to hear you're making such good progress and will be seen next week. You certainly have an excellent GP.

@InOtterNews hoping your chest feels better soon. I know what you mean about the intrusive thoughts and also find they are worse when I am tired. Sending you a hug, the uncertainty and 'what ifs' are just awful.

@gillmoregirl it must have been a shock to get a call when you weren't expecting it. I know what you mean about being too shocked to ask. I have relayed calls to friends who have said 'did you ask such and such' and when it is happening I just can't think straight. Will you get another consultation to answer your questions? Sorry to hear you're wobbling, that is understandable. Sending you a hug too, it is a lot to deal with so soon after your surgery.

It has been over two weeks now since my biopsy and I've not heard anything and I am getting more and more anxious each day. The MDT is on a Wednesday so I phoned the secretary yesterday to see if there is any news. She told me the results were back but wouldn't say whether they had discussed them at the MDT. It all seems to hinge on that. She told me that the gynaecologist would ring me today but I am not overly optimistic.

@Starmer oh gosh absolutely! I was thinking about this last night and made a pact with myself that after all this I am going out and enjoying myself - no more worrying about a clean tidy house and having everything up to date.

Hope they ring soon @FizzyOrange!

@gilmoregirl
Not surprised you're feeling wobbly. How about ringing your CNS? In normal times, you'd have been given the results face to face with the nurse sitting in to explain and reassure one-to-one afterwards.

I didn't have the infusion/tablet combo, but my onc did show me a graph showing how effective it was for Stage 3. Apparently you get a lot of bang for your buck. 'Relatively' gentle compared with bc and ovca. As @Starmer says, the tablets are fine, once you work out when to have breakfast so you can eat at a reasonable time in the evening. I used Aveeno on my hands. Still do, but feet seem to have escaped unscathed.

Well here I am again.
Been to see someone today for a 2nd opinion on my eye and he is referring me to sheffield to ocular oncology.
11 months of being basically dismissed.
I'm so scared.

thanks everyone. Trying to think of it as insurance policy. @Thymeout I don't even have a dedicated CNS. Can you believe it. One call from someone before surgery whose name I can't recall. Need to start recording on paper every phone call. The admin involved in cancer is bloody unreal !! Hopefully the oncologist will call me next week as surgeon said he would speak to her today and she will be in a position to explain more to me. Until then I'm going to try to put it out of my head. Need to concentrate on recovery as still sore and tired.

Hope you are continuing to do well. ❤️❤️

@Shrillharridan I'm sorry i can't recall your situation but so sorry you're here and scared. Do you have someone you can talk to. X

Thanks.
I'm petrified.
Even more so since I've been having symptoms for 11 months

I have 2 kids

Hi all, I've been MIA for a bit. Mainly just focused on day-to-day stuff and not feeling great due to chemo which is getting heavy. Just one cycle to go now.

@gillmoregirl I'm sorry to hear your news BUT - and I know it's a big but - you can totally do this. You will most likely have IV oxaliplatin along with capecitabine tablets. It's not fun but it's doable. If I can do it, anyone can. But first focus on recovering from surgery. One step at a time eh?

Will leave it there as I'm not feeling the best (nausea has been heavier this cycle) but I'm still around! Feeling rough physically but doing extremely well mentally .

Glad to hear it, Lucy- I tend to feel cheerful most days too, but I definitely have moments where it gets me down. The other night I noticed that my cankles had developed to elephantine proportions, and I panicked then, thinking it could be my heart or kidney failure. The doctor came out the next day and diagnosed cellulitis, so I've got antibiotics again, and water tablets. I'm ok now I know what it is.

@Shrillharridan, there must be so much flying through your mind. I'm a big hypocrite, but try not to catastrophise, hey? This is the worst time, I think, between being referred and actually knowing what's going on. Take it a day at a time, and try your best to distract yourself.

Thank you Bof
I've had so many tests since January and then covid happened and now this...
I'm so scared and feel so angry.
The dr today was very shocked I hadn't been referred back in January...

@gillmoregirl I do think they need to explain things rather more than that! It is so hard to really think of all the questions in the moment. I'm bc but also multiple lymph node tumours. I will be hoping that chemo will search and destroy all the waifs and strays for both of us. Thymeout is right - I researched the graphs for this myself and for S3 chemo does give a lot of bang for your buck.

@InOtterNews Feeling ill and tired can have dire mental consequences I find. When I was ill after chemo my mental resilience utterly deserted me - more than I was expecting. How can any of us not have these anxious 'what if' thoughts sometimes - perhaps letting them out for a free run and then trying to pack them away for a while.

@Shrillharridan let's hope no more delays now and you get answers soon.

I'm freaking out:(