Cancer Support thread 86 - Stay Positive

[LemonDrizzle10]

New thread as other one nearly full.

I do feel bad for you @WorryMcGee . It’s just made me realise my life won’t be my own at times

@SierraSapphire it's awful isn't it? The postman fear is all-consuming, if I see him going down the other side of the road on his usual route, I have to loiter by the front door so that I can grab any post immediately it comes through the door, sometimes taking it out of his hand!

@Makemineadecafplease I stopped my main chemo nearly two years ago but have had a runny nose ever since but that may be due to the oral chemo I've been on for 21 months now. I thought it was due to the chemo destroying the hairs in my nose and I wonder if I have some neuropathy at the end of my nose (I have a bit in my toes). I don't always know when it's running and sometimes it will unexpectedly splash on my top or on the floor!

@EachandEveryone I often have an afternoon nap on my bed, at least a couple of times a week, more when I feel really rough. I also feel quite ill when I get over-tired as then my joints start aching and my mouth becomes ulcerated. Chemo makes you very tired so it's important to rest when you need to.

@WorryMcGee oh honestly, that is unacceptable and what a shame you've had to miss seeing your friend. This is another part of cancer which no-one sees - the way we have to adapt our whole lives around appointments and others' timetables. I realise now that when you live in Cancerland you're expected to be free all day every day for appointments at a moment's notice and at the same time being made to feel 'grateful' that you're being treated.

Thanks @Fantasea, I do hope to get some answers soon.

@eachandeveryone, I do tend to take a nap in the afternoon as well. If you have the time, take some time out to rest as your body may need it.

@Fantasea that is absolutely spot on. It’s happened to me so many times now and every time it just makes me feel like I don’t matter, that I’m nothing other than a “cancer patient” who should be permanently available and grateful for it too.

Morning all. Well, afternoon now I suppose!

@Chocolateismyfavourite I am so sorry to read your news. So unfair. However I also have heard good things about immunotherapy so fingers crossed for you.

@RedRosesPinkLilies Welcome to the thread. Peritoneal is an uncommon one as you know, but I am stage 3 low grade ovarian (another uncommon one) and as Fantasea said the treatment is quite similar. I think with seeding they do try to reduce the numbers with chemo before going in so hopefully it’ll have a huge effect on the cancer and banish it.

I am having a lazy day today, been to the gym and now watching the Coronation with some mince pies I made earlier.

@AGreatUsername Thank you. I hope that’s exactly what happens.
Are we allowed to mention different types of treatment? I’ve read about HIPEC, but don’t live in an area where it is given routinely (Nth Scotland). I feel that I will ask about it, but I also want to trust my Drs.

I hope your treatment goes well

I’m also watching the Coronation- the music is amazing

@RedRosesPinkLilies absolutely ask about different treatment. Even if they explain why it’s not the best option it’s worth asking all the questions you can. You can get second opinions if you’re not happy. Do your own research and take it to your oncologist, and see what if they recommend matches up.

@AGreatUsername Thank you, that’s the conclusion I was coming to. It’s good to get it confirmed

I’m used to advocating for my children, not for myself.. I will get used to it, though.

Hello all....
May I rejoin the most supportive chat imaginable?
I was on here back in 2017 with breast cancer. I was incredibly lucky back then... I had a lumpectomy, radiotherapy and tamoxifen. Physically I breezed through it. Mentally not so much...I didn't deal with the shock and have been terrified ever since about recurrence. Someone once told me it is like walking around being followed by someone holding a loaded gun to your back and telling you they probably won't shoot. That's exactly how it's felt.
And now I feel they're on a hair trigger and I'm not coping at all well.
I've had a lot of irregular bleeding and been for lots of tests over the years and always been told it's fibroids blah blah. On Thursday I went once again as I had a slightly raised CA125 (37) this time she said probably fibroids. But wants to do an MRI and hysteroscopy. She also sent me for another CA125 and a CTC. It has sent me into a complete spin. And the worst of it is I'm signed up to Patients Know Best (I definitely don't!!) and got a notification that my record has been updated. I can't stop thinking about it as in theory I coukd find out results.... I could get peace of mind by looking as they would put on negative. But if it's bad they say "results delayed" and I would know that once more I'm back on the treadmill and I simply can't face it. I feel unutterably pathetic...!!
Anyway this is a very long winded way of saying please may I pull up a pew and have a handhold.
And apologies for barging in when you are all going thru so much. This thread seems as wonderful and supportive as it did when I was on before...

Hi @freddiemercury You are of course welcome back. The way you’ve just described the fear of recurrence is EXACTLY how I feel. It’s 50/50 for me really so I feel like that all of the time.

That is so mentally difficult regarding your results. I have ovarian cancer and my CA125 on diagnosis was 420. I did a lot of research into this and while it is not a totally reliable marker and can be low with cancer present, low levels like yours are more likely to have a benign cause such as fibrosis/adenomyosis etc. So take a breath. I can’t advise you whether to look or not as I really don’t know what I would do in your shoes but if you’re NOT going to look I guess all you can do is try and shut it out if your mind which is easier said than done. Sending you best wishes

Hi @freddiemercury sorry you're having to play the waiting game. I'm only a first time rounder (although already stressing about reoccurrence or treatment failing) and just waiting for treatment to start.

I'm not sure how I feel about patient knows best... fortunately my trust doesn't seem to put anything potentially serious online until I have spoken to someone beforehand which is a blessing, as even with pre MRI standardy kidney check bloods I was googling the hell out of every single result.

Do you know when you'll be able to discuss the results with someone?

@AGreatUsername you are so kind...thank you.
I so wish I'd gone for counselling or something all those years ago as feel I'd be a tiny bit better equipped.
It was one of those appointments where it started out all jolly with her saying "we never worry too much about ca125 but let's have a,peep at you" to suddenly being faced with a barrage of tests..
.aaaargh.
I used to be supremely confident in my health...but since the first diagnosis I leap to the worst conclusion imaginable. I try to keep Michael J Fox's words in my brain

"Don’t spend a lot of time imagining the worst-case scenario. It rarely goes down as you imagine it will, and if by some fluke it does, you will have lived it twice."

It does help a bit.

Anyway...THANK YOU so so much.
And I'm just so sorry you feel the same...no fun at all! I will have a read back on the thread...so I can hopefully offer support and not just be a drain!!!

One very positive thing I can say if anyone's starting tamoxifen is that I found it fine...tho whatever docs say I did find different brands easier to cope with. For example Workhardt (or something like that) gave me acne...relon chem suited me perfectly...so it is worth trying to swap if you're struggling before giving up...

@ClashCityRocker I remember this from first time round too..so sorry you're going thru it. I do remember tho thst it really really does feel better once you know what it is and you can just get on with the treatment.
And stepping away from Google definitely the way ahead...but somehow I can never take my own advice!!
My trust just puts on "results delayed" if it's shitty news.... i am going to try to work out how to unsubscribe! And will get on to my GP on Tuesday...if nothing else he'll hopefully be able to prescribe something to bring me down from the ceiling. Currently raiding the beta blockers I was prescribed for my fear of flying!!!!
Good luck with all of your treatment...

Few questions please! did any of you have a picc line put in for chemo, how often do you have to get bloods done for chemo? Hopefully starting in next few weeks 🙁

@freddiemercury welcome back to our lovely thread, sorry you find yourself here again. I have stage 3c ovarian cancer with a 60-90% chance of recurrence so feel as you've described all the time. I get cross with myself for wasting the time I have worrying about it and could probably do with some counselling but can't face that at the moment. My CA125 was 1115 at diagnosis and like Great says, your level is much more likely to be due to a benign cause but I completely understand the fear and worry with all those tests and then waiting for results. I've been a complete nutcase since my troubles began just over 3 years ago now and have been on daily beta blockers to try and quell my raging anxiety. I take 3 x10mg tablets every day and am 'allowed' to take an extra one on days when I'm feeling particularly mad and out of control. They 'take the edge off' for me but obviously don't stop the awful thoughts.

@Timeforchangeithink I had a picc line, it was the best decision - could run and cycle with it in, didn’t interfere with my life at all (apart from baby trying to pull it out 😬🤦🏼‍♀️) and fortnightly bloods plus IV chemo three days later (I had EC then paclitaxel) were pain free. The EC I had manually before the PICC line went in was far more uncomfortable as my veins weren’t playing ball.

@freddiemercury sorry you find yourself back here, but thank you for sharing your experience on tamoxifen. I’m petrified of it and am leaning towards not taking it. I’d rather live a shorter life without mood swings and weight gain and joint pain and give my DD a happy childhood than live longer but miserably. I am not willing to take a bunch more drugs to counteract the side effects either.

@Timeforchangeithink i have a PICC as I was having weekly chemo. I have bloods done the day before chemo and also on the day of clinic which is every 3 weeks.

@Timeforchangeithink

I had a PICC line put in, but I waited over 3 months(!) Originally my treatment plan said I'd get a PORT after cycle 1, but they forgot I think. The PICC was urgent by the time I got it because my veins were suffering and the nurses started warning me about them - so I pushed and got the PICC the following week.

It's a bit of a thing to put in, but I tested positive for MSSA so had to shower in Hibi for 5 days before and use a nose ointment, then on the day the PICC line inserter took extra precautions because by then not only was my MSSA a risk but I had been on chemo for over 3 months and was immune suppressed.

But it all went really well, was painless and not even uncomfortable.

I didn't enjoy having the PICC line in my arm, it is a nuisance, but far better than having constant blood tests from your veins. I would recommend going for it.

With a PICC line, having bloods done is super easy. Having chemo infusions is much easier too.

How often they do your bloods will depend on your medications. This is my blood test timetable:

On EC chemo: bloods day before the chemo day, which was every 2 weeks.

On Paclitaxel: bloods day before the chemo day, which was every week.

On Abraxane: bloods day before the chemo day, which was every 3 weeks

On Phesgo: bloods on the same day as the injection. Directly after or before.

My chemo was delayed once due to blood test results (grade 3 neutrophenia on Paclitaxel, which they don't expect generally). other than that my bloods were good enough to proceed, although of course far from normal (white and red blood cells in particular).

Which chemos will you be on and at what intervals?

@freddiemercury

Great user name! I also loved Freddie Mercury's music and performance style, what a genius.

There is something so overwhelming about a further cancer scare following having already had cancer I find. So sorry you are going through that.

I have had months of chemo, surgery, 15 x radiotherapy, 12 x 2 immunotherapies so far out of 18 for my HER2 BC. Chemo was a horror show for me.

Then guess what, something else crops up that also needs close observation and if it were to turn malignant would be a horror show beyond comparison: an aggressive type of the most lethal cancer - pancreatic. Atm I am waiting to do the special MRI for that, an MRCP. Lovely gastro consultant said it's low risk now, they don't think it's malignant, but will need close observation ongoing. At least they found it - it showed up on my staging CT back in June 2022 when the HER2 BC was diagnosed. But I told him how awful chemo was for me, and he even phoned me two days after my appt with him about the MRCP / EUS and tried his best to comfort and assure me it's routine and he knows what I've been through.

I suppose we are at least getting tested thoroughly, and for now, that is all we can do. My Gastro consultant said in an understanding and kind way, "It is what it is" when I said how it's so overwhelming and scary for me.

Good luck x

Hello and welcome here @freddiemercury may your stay be short and your tests benign! I am another double cancer person. After a HER2 triple positive breast cancer in 2020 I finished active treatment apart from exemestane and Zolendronic acid and sailed solo round the UK to raise money for Macmillan in 2022.
I got back and went for a check up and Bam! Cancer no 2 triple negative BC. Do not pass go or collect £200. Back to the beginning again with chemo surgery and radiotherapy. I was close to despair when I realised what they had in store for me. Now I am getting close to the end of treatment and am taking oral chemotherapy for 6 months.
This weekend I have sailed 200 miles and worn myself out but I am so happy! I am coping with the new chemo and my energy levels are improving daily. It seems like the saga will go on forever but I just got a glimpse of life beyond treatment. Now I am going to sleep for a very long time!
Love to all
Top

Good morning everyone, a rainy bank holiday Monday here in Cheshire. Love to everyone on this thread.I’m sorry to all new comers or returners to the thread no one wants to join, although it’s the most lovely, supportive thread on mumsnet .
Postman phobia resumes tomorrow after 2 days off (Sunday and today’s BH)waiting for first mammogram results post diagnosis.
I really benefited and feel my experiences and emotions, dealing with this cancer shit show, were validated reading “After the Treatment Finishes - Then What?” by Consultant Dr Peter Harvey as recommended by @TopOfTheCliff . I’m really anxious but I don’t share that with people in real life in case they think I’m completely neurotic. I have close friends who understand but an outer circle of “friends “ who seem to think I should put it behind me as it’s been a year since I was diagnosed.
I really wish I could just magically put my cancer ‘journey’ to one side but the fatigue, insomnia and psychological issues I’m experiencing makes it difficult to achieve. People say to me “ Oh, you’ll be fine, you’ve got the ‘good’ cancer and then tell me of their various friends and relatives who have survived breast cancer. I appreciate breast cancer is treatable but in my opinion no cancer is ‘the good cancer’. I worked in cancer care for many years and know that the disease is totally unpredictable. Apologies, I don’t want to put a downer on anyone reading this, or to pass on my fears, but unfortunately I’ve witnessed many people suffer reoccurrences with the grade and stage of my diagnosis (IDC breast).
However, there are thousands of patients who do not suffer reoccurrences. I realise my experience is biased and not a balanced one, as in my job, I only saw patients with disease progression. This is probably what is heightening my trepidation of the postman. Please forgive my fretful postings. As I said (not wanting to repeat myself) I don’t wish to heighten anxieties in others on this thread and I know there are people who are dealing with a lot more than me. I just feel better for venting on here and being authentic rather than smiling and saying “I’m fine “ as I do the majority of the time in RL.
I have a face to face appointment with a locum GP in 2 weeks. I hope this is more successful than my previous telephone consultation when I was only allowed to discuss one symptom.

@Mycatispretty Vent away - I use this thread for the same purpose, and am eternally grateful for the supportive posts on here, although my cancer should not be a big issue, I am 9 months on from the op, and the wound has still not healed! I can really empathise with the 'I'm fine' routine - if I was fine I wouldn't be back to the hospital twice a week!

It is unfortunate that you worked with more negative cancer cases, and can totally understand how that would colour your view of things. I hope that you can get some practical support from your GP - as no doubt you will from other posters on this thread.

Don't things always look worse in the rain!!!

@ajandjjmum thanks for your message. I am so sorry your wound still hasn’t healed. That must be driving you mad! Sending you healing thoughts.
I’ve always been a covert anxious type as I had an abusive childhood with a bullying, cruel father. I consequently married 2 unsuitable husbands which damaged my self esteem further and exasperated my anxiety. At least I have peace now. I’m sole carer for my 87 year old mum which can be hard
when she’s unwell, but she’s very precious to me and great fun.
You’re right about my job, it has indeed tainted my view on things. I was doing ok a few weeks ago but I had to have a colonoscopy following a positive bowel screening test and I’ve also had a bone scan (repeated x2 due to technical issues) so lots of hospital appointments and waiting for results. Even though I’ve been having a vent I do feel fortunate in a lot of ways and find enjoyment in my life. I’m hoping if my mammogram is clear I the postman phobia and general anxiety will start to recede.

Ah yes, I've got stage 3 cervical cancer and the amount of people who have said it's 'the best sort of cancer to have' really grates. Sometimes I have to bite my tongue from telling them that it's actually now a coin toss as to whether I'll see my fortieth birthday or not.

Any diagnosis of cancer at any stage is absolutely terrifying. I am pleased my cancer is potentially curable, but there are no guarantees and it's the end of my opportunity to have a child and leaves me facing the menopause at 35 years old. And that's the best case scenario, the one I'm hoping and praying comes to pass.

Sorry I'm venting now! Treatment starts a week today and I'm in some sort of nesting mode so trying to get the house blitzed, plenty of shopping in etc.

@topofthecliff glad you had a good time sailing, I'm looking forward to getting out in my kayak. There's something very soothing about being on the water.

@ClashCityRocker I had a TAH last year, putting me into menopause at 36. I am finished family wise so don’t have that to contend with but if you ever want an early menopause rant I am here! My only pre treatment advice would be to stock up on snacky things. I craved fruits and juices and carbs and are constantly!