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.

@Shrillharridan It’s completely understandable for you to be freaking out, especially as you’ve been messed around so much. Did you ever get the MRI? Do you know when you’ll get your appointment at Sheffield?

It’s so hard when all you have is uncertainty. Bizarrely, it will feel easier when you know what you’re dealing with, and what the plan is. I’m sorry it’s taking so long to get there.

In the meantime, all I can suggest is that you take some deep breaths and try to distract yourself- I know that’s easier said than done

My symptoms are really bad tonight. Could barely eat dinner as felt so full and sick and pelvic pain is awful. Cried myself to sleep the past 2 nights. So scared for my family, don’t know how I am going to get through the next 2 weeks waiting for results.

It’s the WORST time, honestly, I know. Please don’t waste your energy though- you need it for what comes next. Try to fill your mind with other things.

@lucywarlowsrighthand I'm glad to see you are doing well mentally, even while coping with beastly chemo.
@Shrillharridan it's absolutely shocking that there has been so little action on your eye condition so far, but I hope you get an oncology appointment quickly now.
@gillmoregirl really sorry about the dg, it's scary but hopefully the treatment will be very effective.
@iamsodonewith2020 sending hugs and huge sympathy. I can't remember where you're at with appointments and investigations, but I do hope you get some answers soon. Don't be afraid of making a nuisance of yourself if you are having a long wait. Re ovarian cancer, a friend of mine was dg stage 3 15 years ago and has had no recurrence.
@fizzyorange did you get a call yesterday? I do sometimes wonder if the doctors and nurses really understand the impact on us of all the delays and uncertainty.
@mrspnut glad to hear the vaginal cancer isn't linked to your breast - again, rubbish communication making things harder for you. Hope the private referral works well.
@bitoffun I do admire how you keep cheerful! Hope the ankles become slim and lovely again!
@inotternews boo to chest infections and breathlessness, very careless of them to miss that, but I'm glad to hear you can enjoy some food again. Completely understandable that you're anxious about if the transplant will work long-term. Is there any specialist counselling available in your situation?
Sending warm greetings to all, including @Acinonyx2, @Starmer, @Lizdeflores, @Thymeout and all the other fantastic women here.

I am still very nauseous, can't really eat at all, or drink much to DP's dismay - however I have found that chips of ice work ok, DP's DS smashed the cubes with a hammer and I have them in a wide mouth vacuum flask. I do feel very miserable about the prospect of another five treatments - even though I know they can prescribe other anti-sickness meds, I feel like anything oral will be impossible. I expect it will be better in a few days.

It should be better sooner than that! Are you under that Palliative Care nurses? They are 24 hrs and can prescribe. If not, an out of hours GP would do it. I hate thinking of you sick.

Hugs to everyone who needs them and sorry life is so shit for so many of you.
DS gets out of SI Monday and I'm back on the merry go round. Bloods on Monday and Scan on Tuesday. I've done really well at pretending this isn't happening couple of calls threw me but Gyny want me back for another appointment and can do it at the local hospital. I explained that I was having loads of appointments but no one was really explaining what is going on and she seemed hopeful this might shed some light. TBH I kind of want to stay in the dark and just get birthday and Xmas out of the way.

Thank you
I've not really slept much
Not helping that I've got a weekend until the referral can be done
Do any of you know if a private dr can refer to an NHS service??

I was googling last night too
That was a mistake

Please don’t google. I am lying here crying after googling. It’s not good for us mentally.

Hi everyone, I wish I’d known of this thread five years ago. Just thought I would say hello. It’s been just over five years since my BC diagnosis, grade three tumour. I had just turned forty two weeks before. I had four rounds of neoadjuvant AC followed by four Paclitaxel, then surgery where it was discovered that there was cancer in five of sixteen lymph nodes. I then had a month of radiotherapy. I’m still here to tell the tale. The fear never goes away but it ebbs and flows with time. I’m only ever as good as my last scan but long may that last. Much love to you all.

I know...I know...
I've done some cleaning, had a walk and been to the shops
I'm so tired from not sleeping...
I've also had diahorea (sp?) Since yesterday afternoon...and upset always goes to my tum

Morning lovely ladies xxx

@Bloodybridget so sorry to hear you still feel so nauseous, that is horrible. Is an anti-sickness injection a possibility? I do hope they can do something for you before your next treatment. No, I didn't get the promised phone call from the consultant so I will have to try again on Monday. My weekdays since the end of September have been spent on high alert waiting for the next phone call and I feel exhausted with it. At least the current call that I am waiting for is to give me a formal diagnosis or call me in for that so I will then know what they plan to do.

@Iamsodonewith2020 sorry your symptoms are bad and not being able to eat is awful. I try to sit up really straight when I eat as it means I don't get that horrible indigested feeling. Also, try not to drink too much liquid before a meal as this can contribute to the overly full feeling. I really do understand about the waiting too.

@Shrillharridan I used to the the queen of google, spending hours on various sites scaring myself silly. Remember that a lot of the information is out of date and even if it isn't, may not pertain to your situation. Upset always goes to my stomach too so then having diarrhoea on top of everything else just makes it all even worse.

Lovely post, @IrishMumSW19. I hope you remain well for years to come!

Feel so sick
No appetite
What the he'll do I do for the next x days/weeks??

@Bloodybridget I was told there were Big Gun anti-nausea meds in reserve if necessary so do ask about this immediately and for the future. My friend's sister has had to have something IV for extreme nausea following chemo.

@Iamsodonewith2020 and @Shrillharridan you are in the horrid waiting room it seems. Try not to catastrophise - at least not constantly! Whatever the final details are - there will be a treatment plan of one kind or another.

@IrishMumSW19 lovely story thanks - always nice to see people sail past the 5 year line (and a similar diagnosis to boot).

@FizzyOrange I am eagerly awaiting your meeting and results!

Thanks all for kind and helpful messages. I did get injectable anti sickness drug from my GP and he also referred me to the community nurses (don't think I qualify for palliative care nurses atm @BitOfFun) - anyway our lovely NDN is a GP and offered to do an injection this morning so I gratefully accepted. Then about half an hour ago a very nice nurse turned up on the doorstep! We had a useful chat with her, she explained how the referrals work so I know what to do next time, and I have another injection here that they will come to do if I need it. I will talk to my oncologist and see what she suggests for the future. I think I am a bit better, I ate an egg, scrambled, for lunch!

So sorry to see all the horrible times people are going through here, symptoms, side effects and anxiety. @nixnjj I do get how you feel about it possibly being easier not knowing the full picture for now, but I think most of us would say uncertainty is worst of all.

@IrishMumSW19 really good to hear your story, wishing you a long and healthy life!

It’s hard to see so many folks afraid and waiting for information and appointments. The system grinds slowly at the best of times and Covid is slowing it down further. Best wishes to all of you.

@Shrillharridan you just have to keep body and soul together with snacks and drinks and maybe some meditation or calm apps. Try not to catastrophise and definitely no Googling. Get through the days an hour at a time if necessary. Macmillan offer counselling if you need it while you wait. Or have a rant here!

I’m frustrated today because just as I was starting to recover and exercise again my ankle wound has broken down and is discharging pus and hurts. I’m on antibiotics but it seems all I can do is go back to lying with my leg in the air. Aargh it’s so annoying! But I don’t think it’s a serious infection just a stitch or something lurking in the wound. If it hasn’t settled by Monday I will get it looked at. It’s making me grumpy!

Have a good weekend folks
Top

@Shrillharridan
I'm like you. Anxiety goes straight to my stomach. After 2 days of not being able to eat more than a banana or a choc flake, my lovely GP gave me a low dose anti-depressant and valium to take till it kicked in. For me, it's miraculous.

I have a friend who works at the top cancer hospital in New York and he said they always offer anxiety meds as routine in similar circs. Give it a try?

I might have to...
Feel dreadful

@Bloodybridget pleased you got your injection sorted out and that you feel a bit better.

@gillmoregirl the amount of admin is insane! I had all my letters in a pile on the table and it was only when I spilt a drink all over them and had to dry them all out that I finally got them into some order! I am finding that doctors want an instant response to 'when was your last CT scan' so I have now made a list of all of the important dates rather than sorting through all the letters every time.

@Shrillharridan I would second Top's suggestion of Macmillan - I have rung them several times since all this began and found them to be very understanding and kind with no rushing off the phone. You can end the call when you've had enough, there is no pressure. I have also rang the Samaritans in the night when I needed to talk to someone. I find someone neutral often better - friends and family mean well but I often find I am reassuring them rather than the other way around. Or yes, rant here - we all understand.

@IrishMumSW19 thank you for sharing your story - so encouraging to hear you are past the five year mark.

@TopOfTheCliff oh no, one thing after another, poor you. Hope it settles soon.

Hello all
Sorry its been so long since I posted. To introduce myself to the thread, I have ER/PR+,HER- breast cancer. In more than one area in my breast and in my lymph nodes. Diagnosed in the summer and currently having chemotherapy, prior to surgery and other treatments in 2021.
Latest from me: I had my 4 rounds of EC and tolerated it pretty well but got a UTI soon after the last dose. That delayed my first round of Docetaxel slightly and then after I'd had that I came down with a mystery temperature which resulted in multiple trips to A&E via acute oncology, and eventually i was admitted to hospital for 4 nights. I'm home and much better now, still no idea of the cause and my temp is still slightly raised at times. All the cannulation has done my vains in, I'm pretty bruised!
Next round of chemo due next week all being well (please stay down, temperature!) and they are switching me over to paclitaxel which will be weekly for the next 9 weeks. Hoping that is going to avoid any repeat issues! And, thank goodness, I can have a picc line.
In amongst all this I've realised I'm maybe not coping as well as I thought, I just feel so numb. I've got an assessment for some emotional/psychological support in a few weeks so that's good. Taking things one day at a time for now. This has been my longest gap between chemos, maybe I'm just missing my steroid highs!?!
Love and sympathy to all xx

Just checking in to say hello and I am so sorry that so many of us are having such hard times at the moment. This thread is really amazing for support - just reading the responses to people makes me quite emotional.

I had my much-awaited CT yesterday and see the oncologist on Wednesday. I've also had a couple of wig catalogues delivered which are quite daunting. I flicked through them and put them away. One thing at a time for now!

Sending lots of good wishes to everyone for a better weekend.

@AlbertCampion glad to hear you've had your CT, I found that really hard - waiting for it, having it, waiting for the results. You're nearly there now. Will be thinking of you on Weds.
Can you get anywhere to try wigs on when you feel up to it? I wasn't sure about getting one but there's a fitting place at the hospital I'm at and consequently I now have a wig which is a radical departure from my usual appearance - my hair was brown and curly/frizzy and I've gone for short, sleek and blonde, it probably looks better than my actual hair and it did cheer me up a bit! It turns out that i don't really mind being bald too much and I've got a couple of nice soft turban things, so I've not actually worn the wig much but it's nice to have it there in case I want to wear it.

@Lubballoo That's really interesting that you went for something completely different. I have always wanted shoulder-length beach waves and there's a wig which is just that - but a couple of people have said to me that I should just get one that's like my usual hair. I found that a bit disappointing which I think is why I put the catalogues away - the ones that are closest to my usual hair are all a bit dull and "coiffed". I might take inspiration from you and go for a new look!

Having said all that, usual hair disappeared last weekend when DH bleached and then dyed it purple. I have always wanted purple hair and decided to do it before I lose it. Am very pleased with the result - makes me look far more daring than I actually am!

@AlbertCampion I haven't gone for a wig (not yet anyway) but if I did I would definitely go for something different. Did think about something short and blond. I have got a nice hat. Roll on Wed!

@Lubballoo apart from the obvious stress all these blasted changing chemicals must be wreaking havoc on our brain chemistry.