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.

Thanks so much for the thoughts and tips. (Just off to raid the kids' sweet supply for a lollipop!)
@BitOfFun hope the scan goes really well, I'll be thinking of you too xx

We can do this, ladies! Then it's the weekend, yippee!

@Squiffy01
Good to hear from you again but v sorry you're struggling emotionally. Nothing unusual in that. I've heard that a lot of people suffer a let-down after chemo is finished and all the worries they've shelved during treatment catch up with them.

I think Macmillan offer a counselling service. Even a phone call or two might help? It's difficult to open up with your immediate circle when you feel you have to put on a brave face not to upset them.

MAS (MaryAnnSingleton) who started this thread years ago went from a Stage 1 breast cancer to Stage 4 in a sudden unexpected progression. I remember her writing about how much counselling and mindfulness helped her. (NOT saying at all that this is likely to happen to you, but, as well all know, it's so easy to rush to worst case scenarios when you're feeling down.)

I've been tearful myself after getting back from the scan. It doesn't help that now DH has wallpapered the loo in my vintage maps, I keep thinking of places I'll never see. AND I got home to a gorgeous bouquet of flowers from an elderly neighbour, the bastard! Trying to pull myself together, but it's hard once you've been set off.

Fingers crossed for the results @BitOfFun, I have been thinking of you x

Thanks so much, Snows .

Hi everyone, I feel silly for posting and I don’t want to take anything away from anyone going through this horrible disease, but I have been having blood in my stool for a year now, it was first diagnosed as hemorrhoids and then around March I realized the blood I see is not from hemorrhoids as that blood is bright red and the blood I see is a very dark maroon and mucasy not on all of my stool but on little parts. I have severe health anxiety and I’m also pregnant which means The colorectal surgeon is waiting for me to give birth, which isn’t till around January to do a camera test. I’m beside myself with worry everyday and constantly researching, worrying about how time is being wasted. :(

Welcome to the thread @Jazzy1990 don’t feel silly for posting even just the thought of having something is awful to deal with and not being able to find out until January must be so difficult for you.
Have you any other symptoms, probably hard to know with being pregnant?
Have you had a stool sample? I had two different ones that is what got me extra tests and then diagnosed as something came up in one of those.

@Squiffy01 Hi, I’ve had two stool samples done. The fit test it detects blood. One was positive and the other negative. The positive one I dipped into where I saw blood and negative one dipped into where I didn’t. The colorectal surgeon said the fit test would definitely be positive if I was seeing visible blood so he didn’t want me to do it but I still did.

It’s true with pregnancy you don’t know what symptoms are pregnancy related and what’s not. My symptom is mostly blood in the stool and a bit bloated but don’t know if that’s pregnancy related or not. what were your symptoms if you don’t mind me asking?

@Jazzy1990 I recommend dropping in to the Bowel Cancer UK forums. Everyone there is really lovely and supportive. I think someone will be able to advise you on what you can do other than just waiting.

NB I’m not suggesting that I think you have bowel cancer! Just that people there know more than I do... mine was diagnosed 5 weeks ago so I’m a complete newbie. The waiting is the worst part. But please DON’T Google. Most info on bowel cancer is very out of date, and there are many other things that can cause bleeding.

Good morning all! It's a lovely morning here in London, and I slept till 7, yay!
I have a lot to catch up with here, we got back from a couple of days in Norfolk on Thursday night, saw family, it was lovely.
Firstly greetings to @Jazzy1990 and @notthedressiwanted, it's very hard waiting for tests. Hope you both get good news eventually, Jazzy it seems all wrong to have to wait till January for more investigations. Hope the bowel forum is a help to you.
@LucyWarlowsRightHand very sorry for what you've had to go through with shock info, rude nurse and all - are you planning to switch hospitals, how easy would that be?
@Squiffy01 sending you a big hug and lots of sympathy.
@Starmer wishing you as easy a passage through chemo as possible!
@TopOfTheCliff that's an amazing thing your friend is doing - have you spoken to her since she finished?
@KentishMama what a relief to get the seroma drained, can't believe the surgeon tried to prevent it. Will be thinking of you on Tuesday. Contemplating chemo is always grim, but hopefully you will feel better able to face it once you have had the meeting.
@BitOfFun sending every good wish to you that scan results are OK. I can just imagine how the neighbour's flowers set you off, it's always the kindnesses, isn't it? And I hope looking at your bathroom maps will give you some pleasure, and not just the sad 'what if' thoughts.
@Lubballoo you've had a lot to cope with recently, I am sorry. How was your first chemo yesterday? Did you manage the cold cap OK (it was you, wasn't it)?
@balkanscot how's your poor mouth feeling? I do hope a little less sore. When's your next chemo due?
@InOtterNews how are you doing? Thinking of you as your hospital date approaches.
@iVampire that's a long time to wait for blood test results - oh I just remembered one of them does take ages. Hope your other tests went smoothly.
@Lurkeycakewoman congrats on finishing chemo, much sympathy re neuropathy and fatigue. It is depressing feeling tired all the time, it's like life is all grey. Hope you can have some better times soon!
@TreeWitch hope your poor breast is calming down now, did you see someone re bleeding?
@Skap thinking of you and hoping your mammogram results are OK. Did you mention the pain to the people who did it (radiographers?)? 4 week wait is tough
@Piggles39 how are you? OK I hope.

Waving and sending very good wishes to everyone else here.

I had a lung function test yesterday, felt I didn't do very well, but the woman who did it - can't remember her job title - said she thought I'd be OK to have surgery . . it's not clear at all who will discuss results with me or when, unless it's the surgeon on 16th. I now have a date for post-surgery appointment with my oncologist, by phone on 21st October, which makes me think the op won't be as soon as I'd expected. I just wish I knew, and DP is pushing me to contact the lung surgeon's secretary again, but I don't want to be a pushy nuisance. I might try contacting one of the CNSes in a few days.

@Bloodybridget switching hospitals is apparently very easy. I live in Amsterdam and we have plenty of them here, including a world-class dedicated cancer hospital. My GP made the referral yesterday and apparently someone should be in touch with me on Monday to make an appointment. All I now have to do is give permission for my records etc to be shared with the new hospital.
Had one of my shocking headaches yesterday and am not feeling much better today but will try to rally myself. It sounds ridiculous (or perhaps only to people who don’t have cancer) but that nasty nurse on the phone really knocked me for six. I felt (feel) very alone and like I needed to determine the treatment myself. But three people now - with experience - have assured me that everyone at the new hospital is lovely and it won’t happen there.

Sorry for rambling on. I’m at a bit of a low ebb this week. Not surprising really with diagnosis on 29 July and it’s already two weeks past my surgery! It’s been a whirlwind. I want to get my positive attitude back but I’m also telling myself that it’s ok to feel shit for a tiny bit!

I’ll be back with less self-centred posts but bear with me for another day or two

@LucyWarlowsRightHand Hey I have messaged the nurses and posted over there and they have been helpful but I guess I feel so helpless having to wait till January. I just feel like I’m not doing so well mentally. If it was normal blood I probably would have been doing better but cause it’s a very dark blood it’s pushing me to the edge.

@Bloodybridget Thank you for the warm welcome.

@Bloodybridget I wonder if your DP could contact the lung surgeon on your behalf?

I absolutely couldn’t face calling my GP yesterday so exH did it for me. Even if you need to take the phone to give permission, it can be helpful to have someone else conduct the conversation on your behalf.

I’ll say something else too: I’ve heard people wishing that they had been more assertive about their treatment, but I’ve never heard anyone say they shouldn’t have been so pushy. Even me the other day: I was shocked that the nurse was so awful to me, but I’ve never thought, ‘oh, I should have been more patient and just waited a week for my appointment like she said’

@LucyWarlowsRightHand good point re pushiness. When I tried calling the surgeon's sec last time, I got voicemail and had to email her, she did respond within a day or so. So I could just email her again. Glad to hear you can move to the cancer hospital easily, sending you a big hand squeeze. Must be horrible feeling so alone, you know so many of us here are metaphorically right by your side, if that's any comfort. And you know quite well you never have to apologise here for being "needy", "self-centred", or any of the other things we beat ourselves up about!

@Bloodybridget I am amazed at how you can remember to tag people and remember what they are going through, I am hopeless at these things. I do hope that you can get you op date sorted though.
I went to see our GP practise nurse who kindly redressed by wound and cleaned me up. It continued to bleed for a day but has stopped now. Bruising is starting to appear now but swelling is not so bad. I have an appointment through for a telephone consultation on Thursday afternoon with Breast doctor

@TreeWitch it gives me an hour's occupation every so often! Often while waiting for DP to be ready to go out or whatever! Glad you are slightly improved.

Hi everyone

Sorry I have been absent this week. I have zero exciting news - which I guess is a good thing. I've been going out for walks and exercising daily. Not yesterday as the fatigue hit me like a smack in the face with a frying pan. So I'm getting better at giving myself a rest day.

I'm busy trying to prepare for the hospital. Have joined a (closed) lymphoma group on facebook to get some top transplant tips. I've had my full protocol through from the hospital so I know exactly what is happening and when up until about 3 days post-transplant. Also, it's blood cancer awareness month which means it's actually a bit easier to find info out.

My actual resurrection/re-birthing/second coming will happen on 22nd September so going to channel the Queen, with 2 birthdays from now on

@BitOfFun I really struggle with people being nice when I'm feeling a bit low. This whole thing for me has taught me how much people care about me. Even people who are just acquaintances have been so kind. Bastards . But enjoy looking at your maps when you're on the loo - some of the best thinking/planning happens in that little room.

@Bloodybridget re the test results - I get the most useful updates from my CNS or transplant coordinator rather than the Doc most of the time tbh. Even if it's just an indicator - it helps me prepare for when I do speak to the Doc.

That's it exactly, InOtterNews, you understand perfectly!

I hope the chemo went ok yesterday, @Lubballoo x

Wow @BloodyBridget you are awesome. Great attention to detail! I hope your lungs are adequate.
My World Record friend dropped in on her way home to give me her spare shirt. Another lovely bastard
I’ve survived my final FEC okay but the filigrastim is doing that swarm of bees thing in my chest now
I’m going to try going out for a walk and ignore it. I’m bloating up with the steroids horribly and that’s going to get worse with doxetacel.
Hope you are all having a pleasant weekend.
I’m actually a bit bored today which is better than feeling lousy I suppose.
Otter I like your rebirth day idea. Something to celebrate!

@Bloodybridget I too am in awe of your thread skills! I'm afraid anything similar is going to be somewhat beyond me!

My chemo on Friday was ok. I hate cannulas and that was the worst bit really. I'm going to try and find out if it could be possible to have a port fitted because that would be massively preferable I think! Late afternoon Friday I was really laid-low with nausea which was pretty horrible. The DC have never really seen me ill before and were a bit upset. Fortunatly the antisickness meds kicked in and we had a pretty normal day yesterday. Then today I've felt mildly queasy but managed a gentle bike ride with a lovely friend. Then 10 minutes ago I did my first injection of the bone-marrow stimulating drugs. Not fun (although I'm sure i'll get used to it!) and what was worse was reading the list of very common side effects - so many of them similar to the chemo including hair loss which would rather undermine the bloody cold cap! Gah. So things are ok and I really shouldn't compain -still so glad treatment has started - but i am also feeling a bit sorry for myself and quite uncertain about the injections, whether i did it properly (feel a bit bruised) and whether there's going to be a new onslaught of side effects!

@BitOfFun hope you've been able to have a reasonable weekend. Thinking of you. Your loo sounds amazing! x

@InOtterNews I love the idea of a 2nd birthday/rebirth etc! Glad things are moving forwards.

@TreeWitch hope the healing is contiuing. I am still pretty bruised too from all the biopsies, just needs time I guess. Very pleased to hear the bleeding's all stopped, must have been horrid to deal with.

@LucyWarlowsRightHand I hope you've been able to wallow plenty, and goodness knows if we can't be self centred here where can we?! Thinking of you x

@Lubballoo the injections get easier. The first one is mainly mind over matter. I don't think you can really go wrong with them.

Tonight I started a quadruple dose of GCSF before my next harvest on Thursday. I'd almost forgotten about them. My only side effect is immense pain and because of the dosage it's started immediately.

Another bastard friend came round today bearing gifts/stuff for my transplant. 40 ice pops, 4 giant bags of fruit pastilles and some hair clippers. So I shall be discharged diabetic and bald 😁

Reporting back in .
I don’t think I have been around much since I had a mastectomy At Wythenshawe in March and came back to the Isle of Man 2 days later in a wheel chair with a chest drain straight into 14 days isolation at home .
The DIEP reconstruction was pulled at the last minute and I had a skin expander inserted which I had inflated over a few weeks here. .
Still waiting for plastics at Wythenshawe to be willing to reconstruct and to match other side and it might sound shallow but I hate , hate the implant .
It feels alien and cold and hard and I am using diclofenac gel to cope with the pain .
I am on #13 of 18 Herceptin jabs .
I see the physiotherapist every two weeks to release adhesions so am lucky in that respect .
I had a routine mammogram in August and that came back clear . Poor radiographer got sobbed at !
Our island’s borders are still closed and we have had 108 days free of Covid .
A new case today but was picked up on routine testing and had been isolating since return to island so it is thought there has been no transmission .
I have a video call in the morning with the surgeon but I am certain that she will have no plans to see me in real life let alone operate !
I have skimmed through the thread and thank those who have asked about me
@Skap
@Bloodybridget
@gillmoregirl
Sorry if I have missed anyone .
This group was such an enormous help and support to me .

As I thought . Another video call planned for early next year . Quite happy that it’s not before the end of the year and by then I will have finished Herceptin and should no longer be immune suppressed.
She will want to see me face to face before operating .

Haem outpatients today, and my blood is behaving itself

(Yes, the detailed test, which establishes whether leukaemic cells are sufficiently suppressed, always takes about 3 weeks; other bloods are routine and so are usually back same day - I get them all done, plus an ECG, in the run up to the 12-weekly prescribing appointment)

So I start the week on a good note.

(Boob results Thursday)