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.

@barberousbarbara I'm on a few FB groups already so we have probably crossed paths there . Really struggling today after the port installation. Feels sore, achy and weird. Unfortunately I'm a born overthinker so my mind constantly flits to the future. Hard not to when you feel so crappy. I really feel that I will end up like my mum.

Afternoon all. I was in the last thread too. I was diagnosed with grade one womb cancer on 21st May and had a hysterectomy, ovary, tubes and cervix removal on 3rd June so I'm about 2.5 weeks post op now.

Had my follow up call yesterday and luckily the cancer was found to be grade 1, stage 1a so totally contained within my womb and no spread at all in my pelvis.

However worryingly when I had my original chest X-ray it picked up what my consultant called a 'tiny, tiny shadow on my arm/shoulder'. He told me this was nothing to worry about as they see this kind of thing all the time and arranged for me to have another X-ray after my hysterectomy. Unfortunately the repeat X-ray is inconclusive and I've now been referred for a CT scan. Again the consultant reassured me that it is very unlikely to be anything sinister and thinks it's probably what they call a 'bone island'. I'm still absolutely petrified. Rationally and statistically it's likely to be fine but I cannot allow myself to think it will.

In my mind, as my cancer diagnosis was completely unexpected, I can't stop thinking this could be something awful too. Every twinge and ache has me convinced there's something wrong. I can't talk to DH as he is so happy that the hysterectomy has sorted the other bit. I think I'm still in shock from the original diagnosis and I cannot let myself trust that the Drs are telling me the truth. I used to have health anxiety but got a handle on it over the last few years, but all this has really set me back. I'm reluctant to go to my GP partly because of COVID and because I think they'll tell me, as they have in the past, that I just need to deal with it.

Hello everyone,
I've been lurking on the threads since chemo began to melt my brain. I was diagnosed with grade 3 invasive breast cancer in November, had surgery in December and January. Currently having chemotherapy and plan is for radiotherapy afterwards.
I'm trying to stay positive with the power of ginger biscuits until I feel better and I hope everyone has as good a wknd as possible in these peculiar times.
The steroids stop me sleeping and it helps to have a little company with you all in the middle of the night.
X

@citybumpkin It's ok to feel down, particularly after having a port fitted. I was sore after my PICC was installed but it was the best thing. It makes chemo and bloods so much quicker and easier. I had a blood transfusion and IV antibiotics through mine too. Be kind to yourself and just take things a day at a time.

@DivisionBelles I hope your shoulder turns out to be nothing to worry about. It's great your cancer was grade 1, stage 1a, it was caught so early.

@romola steroids kept me awake too. It was so bad I had them reduced, although I was being sent home with the full dose. Is it something you can discuss with your team?

I'm officially finished with active treatment for my triple negative breast cancer. The next step will be my first follow up mammogram.

Happy Saturday, everyone?

I've been read a book called Oestrogen Matters, which was recommended by @Peaceanddove, and then the NHS pages online [https://www.nhs.uk/conditions/breast-cancer/causes/ here], and I'm more confused than ever.

Basically the book by a world expert says the opposite to what my oncologist's treatment plan. Do you think I should bring this up, or will he think I'm being rude to question his methods?

Hi I hope im ok to join.

I was diagnosed with thyroid cancer 6 months ago. My surgeon told me if I want to choose a cancer to get then this is the one as its so slow growing and easy to treat.

I feel grateful that its a lot easier to treat than some cancers but Im still struggling and I feel that I shouldn't as so many people have it worse than me.

I thought that as it was so easy to treat they would remove the thyroid and the cancer would be gone, but no I have had my thyroid removed and RAI and now im trying to get my dose of levothyroxine right.

I also have to have a whole body scan every 6 months and ultrasound every 6 months, blood test every 3 months and see my consultant every 3 months.

If this is the best cancer then I take my hat off to any other cancer sufferer. I finding this journey so hard so you are all so amazing going through yours.

Hi everyone - I've become a bit of a lurked recently, and haven't posted for a while. Quick history - diagnosed with breast cancer in October 2019, had 6 rounds of chemotherapy, lumpectomy with therapeutic reduction mammoplasty and cardinal lymph node removal. Pathology showed 100% response to chemo and no spread to lymph nodes. Had accelerated radiotherapy ( 5 triple doses instead of 15), which finished 5 weeks ago. Thought I'd finally had treatment where I didn't get a grim side effect, but admitted to wythenshawe hospital yesterday with really bad infection and unbearable pain from swelling under my armpit (by my lymph node scar) and on my boob, coupled with pins and needles down my arm. Infection is spreading down into my arm, which is now swelling and hot, and I feel really crap!

I'm really bored and fed up and knew I could come on here for a bit of a moan! Hope you're all having a better weekend than me! 🙂

Welcome to imasurvivor-there's definitely no 'easy' cancer; you are being very brave!

Zorgo, my heart goes out to you- that all sounds a lot to deal with, especially in this heat, so moan away as much as you like!

@Zorgothslugofdoom How are you today? I

Hi all

Thanks for kind wishes. I'm still in hospital - it's been horrendous since I was admitted on Wednesday. Completely neutropenic where my levels are 0.0 - which means no white blood cells for me. So I've had 6 blood transfusion and 4 platelet transfusions. Add in some lovely antibiotics for good measure.

Finally things are starting to look up in that levels are now 0.2 - which is still extremely low but going in the right. So doctor said I might be able to go home on Tuesday.

One thing that I found difficult to deal with is that the Dr explained that my final chemo will be even worse than this last one (I'm alternating chemos) but that they wouldn't be doing it if I couldn't handle it. I know she's trying to prepare me for what is to come (we haven't discussed how awful transplant will be) but honestly I've been so ill at times I'm tempted to stop it all.

Staff are lovely. No idea about other patients as we are all in our own rooms isolating. Friends have stopped by my bedroom window to wave at me (one bought me a Big Mac passed
through the window 😁)

Hi I found you all
Citybumpkin how your feeling is compleatly normal xx I had a panic attack a couple of days after my picc line was put in it made me so anxious it still does at times when it catches. I ended up in an ambulance and took to A&E 😬 but it does make everything else so much easier. Is a port the same as a picc line it can be used for bloods aswell?

I've had my third EC Friday I still dont know if it's just 4 or do I swap to abraxane next time for 3 more. I'm not letting it stress me out anymore. It's the covid tests before every treatment that's going to stress me out now 😂 I had one wednesday it wasnt fun.
I felt ok yesterday and managed to have a walk. Today was a right off. Of course I'm wide awake now its bed time
Hope your all keeping ok xx

Inotternews hopefully you feel better soon xx
is it just one more chemo you need to have?
I had a big mac last week it tasted of nothing I was so disappointed most stuff tastes of nothing now.

Morning all!
Just been catching up with the thread. So sorry that there are several people having a really rotten time.
Greetings and welcome to @imasurvivor02, I don't think any cancer treatment is easy, and just having the diagnosis is very scary. Hope you can get your thyroxin to the right dose soon.
@romola I'm not sure I ever actually said hello to you on the last thread. Chemo is pants, I guess you're getting nausea if you're hitting the ginger biscuits? Sending you good wishes for getting through it.
@Zorgothslugofdoom really sorry you have landed up in hospital, it sounds so painful. Hope the infection gets under control soon and you can go home.
Ditto to @InOtterNews, that level of neutropenia is alarming. If the final chemo is likely to have similar devastating effects, might they consider keeping you in hospital for a few days so you can be monitored and treated immediately if necessary? Of course you might not want that. Sending very good wishes for improvement.
@BitOfFun I reckon it would be OK to mention to your oncologist that you read the Oestrogen Matters book, and ask him what he thinks of it. He's almost sure to know about it. Isn't it weird how we worry about upsetting our doctors? How's your spinal pain? - somewhat alleviated, I do hope.
@Lizdeflores it might be better to take your own coffee and sandwiches to the hospital on Wednesday, and maybe a little treat for your anniversary?
@barberousbarbara great that you have finished treatment. I'm glad the counselling is proving useful enough for you to keep going with it.
@Lurkeycakewoman nice to see you again but much sympathy to you re panic attack, that must have been awful if you had to go to A&E, and also for the taste issues. What is life if we can't enjoy food, eh?
@citybumpkin I hope the port settles down and gets less uncomfortable soon. At least it's in now and will make treatments simpler.
Was just thinking of @babysharkdoodoodood , have you managed to get a biopsy yet? Think you were planning to go private because of delays? Hope you are OK.
Very warm wishes to everyone here. Who's looking forward to the heatwave and who's dreading it? 30 degrees plus forecast for London this week.

Morning everyone,
Hi to @Bloodybridget, I'm hitting ginger biscuits, ginger beer and chai ginger tea. Damn chemo nausea.
Hope everyone in hospital is feeling better soon, it seems so horribly ironic that the treatment for cancer can make us feel so much worse.
I was thinking about this time last year, I thought I was relatively healthy despite some odd symptons and felt good despite the bastard tumour that was planning an invasion campaign. This wknd I'm struggling to get up and about because chemo has stolen my energy and I'm so queasy. In spite of which I know I have gotten off lightly and im going to try to focus on positives.
If the sun comes out I'm going to potter out under a parasol and sleep in the garden. Hopefully we won't melt in the coming heat and maybe I can find us all some ginger ice cream.
Xxx

@romola towards the end of my chemo I couldn't even walk to the top of the road. But a couple of months after finishing, I could walk for an hour, and was able to really enjoy a few days holiday.
@DivisionBelles so sorry I left you out earlier, it's great that your breast cancer is such low grade and stage, and I do hope you can have a reassuring scan very soon.

I had my results on Friday and my womb cancer was the lowest grade and stage (grade 1, stage 1a) so hopefully my hysterectomy has got it all.

However, a routine chest X-ray before the op showed up what my consultant described as 'a very very tiny shadow on my shoulder'. Told me not to worry and that they see this stuff all the time. Whilst I was in hospital I had a repeat X-ray for a better look, but this has come back as inconclusive. I'm now booked in for a CT scan tomorrow. On Friday when I got my results, again the consultant told me it was highly unlikely to be anything to worry about given the low grade and stage of my cancer and the fact that it is in my shoulder. I cannot allow myself to believe this. I feel if I do, then if it is something nasty I won't have prepared myself for bad news.

Because my original diagnosis was so unexpected I've convinced myself that the cancer has spread and that the Drs are lying to me when they say not to worry. I know this is irrational but I'm struggling. I want to cry a lot of the time, I've convinced myself that my shoulder hurts which makes me think that there is something in there. I've been to my GP about health anxiety before but they just gave me Valium and sent me on my way. I know that rationally it's probably as my consultant has said - nothing to worry about and I'm clinging onto those words as hopefully they wouldn't say that if they had the slightest suspicion it was something sinister?

I'm not sure why I'm writing this, but it does help to write it all down.

Oh @DivisionBelles it's very tough waiting for scans and results. I'm sure you're right that the consultant wouldn't have been so reassuring if he/she had had any suspicions about the shadow.

@DivisionBelles - I agree with @Bloodybridget. (Many thanks for new thread. ) I have never experienced any consultant giving fake reassurance. The reverse, if anything.

I have colon cancer. No symptoms. Picked up by a fluke thru a scan for something else. Surgery 31/10. Clear nodes, no mets, so Stage 2. But tumour developed to the point where it was capable of entering blood and lymph systems, so started oral chemo late Jan. Did 12 weeks, half-way thru, then onc and I decided to stop because of Covid. Too risky to lower immune system any further or put myself in danger thru hospital visits for bloods. Maximum benefit gained in early cycles, so fingers crossed that will be enough to kill off any stray cells. I have colonoscopy and scans being lined up for the end of November.

I'm at a different stage in life from most of you. Have 3 grown-up dcs and 5 gc. Live on my own and don't want to be catapulted into a world of zimmers and carers. Oddly enough, I didn't feel old till this started, but now my main concern is to get back to where I was in October in terms of mobility and stamina. Much easier psychologically than having little ones still dependent on me.

Thank you for your replies @Bloodybridget and @Thymeout.

I went for the CT scan this morning. The results will be available in a week or so, but they said that unless it's anything untoward, I probably won't hear anything until my next follow up appointment which should be 12 weeks post op. I'm going to be a bag of nerves all next week now in case they phone.

I do think I may need some anti-anxiety medication as even if this all turns out ok, the whole experience has switched my health anxiety back on and any pain, twinge or general illness is going to make me panic.

Salutations all

I'm a bit more cheery today - I can finally go home (11 blood transfusions later). Neutrophils are 3.1 today - so a steady increase over the last 48 hours. I very fatigued still but feel more myself

Someone asked about how many cycles I have left - I have 2 left. (1 x RCHOP, 1 x Cytarabine). My next session is Tuesday next week. Transplant should happen within 4 weeks of my final cycle

Tomorrow I have a PET scan to see what progress has been made.

I just wanted to say thanks for all your kind words. Despite being in sometimes a dark place I didn't really feel alone

DivisionBelles while I was waiting for results, right back at the beginning when I felt a lump in September, I was a complete wreck and couldn't function; couldn't eat, couldn't sleep, couldn't stop crying and having very dark thoughts. My gp put me on sertraline (an anti-anxiety drug) which I've been on since then. I was also prescribed buspirone for short term use, as it is fast acting (rather than sertraline, which takes time to work). I honestly don't know how I would have got through the early days without them! I'm still taking the sertraline, which I find really helpful in coping with the hiccups along the treatment pathway.

Just got home from my second stay as an inpatient at wythenshawe hospital in a week. Was admitted last friday with an infection/swelling under my armpit (where I had lymph nodes removed) and in my affected boob. Absolutely horrific pain - lost almost all movement in my right arm due to pain and swelling). Allowed home Sunday night on antibiotics. Didn't feel at all well again on Tuesday, so back in - blood infection markers were through the roof, antibiotics clearly not working. Scanned this morning and I had a massive abscess. Had it drained 🤮🤮🤮! Lots of pus 🤢🤢. Felt some relief immediately, though still in a lot of pain (better than before). Swapped to a different antibiotic and got home this evening! Really hope that's my last infection! I am so fed up with it now. Combined with the anaemia and fatigue, I've had enough! Really, really pleased to be home!

I could do trip advisor reviews for most hospitals close to manchester - A&E departments and in-patient wards (spoiler alert - the food at the Christie is the best, Wythenshawe the worst!) - all of them, without exception have given me an excellent standard of care, and are staffed by some of the most caring staff I have ever met. Combined with the support on here, from people who understand exactly what I'm going through and who don't mind hearing me rant away, it's made the whole process more bearable and less frightening.

Hope everyone is ok and that you're all able to enjoy the sunshine.

Hi all. Sorry to read so many going through such Difficult times I still haven't heard anything despite stalking the consultants secretary. She actually recognised my voice before I spoke the last time which I was so embarrassed about I apologised for calling. Still no idea about appt. what do I do now. Just wait? I have lots of stomach pain and when I go to toilet lots of blood. This scares me.

Sorry hit send before I was finished. I'm so bad at tech stuff. I just wanted to send best wishes to you all. ❤️🙏

Hi all I had it confirmed yesterday that I do have high grade serous tumour, probably started in the fallopian tubes but still classed as a ovarian cancer. I having 6 cycles of chemo with surgery after number 3. The consultant was optimistic about treatment so thats what I'm taking on board. Although I'm worried about treatment it does feel reassuring to have a plan. I need to tell my 7yr old an advice on talking to children?
@Bloodybridget my husband made us a lovely picnic which we had on the Downs before the appt it was a strange anniversary, next years celebrations will be epic!

@Lizdeflores, sorry that you have that diagnosis - I think even if you're expecting it, it's still a blow. There is advice on the Macmillan website about talking to children I think.
@InOtterNews glad to hear you are feeling better. @Zorgothslugofdoom congratulations on getting out of hospital, hope you don't get any more infections.