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Cancer support thread #76 - newbies welcome!

999 replies

Bloodybridget · 17/10/2020 09:41

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.

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Thread gallery
9
gillmoregirl · 03/11/2020 08:45

@AlbertCampion I have now read your blog. Unbelievable that your sample was lost. I really enjoyed your style of writing. Hope you keep it up. You could rival Deborah James. And definitely you did the very best for cobweb. A true act of love in giving her a new home and hope you DS is ok. ❤️

Bloodybridget · 03/11/2020 12:32

@AlbertCampion adding my voice to others, I think you have done the right thing for Cobweb and for yourself, I'm so sorry though. I really hope one day it can be right dog, right time! Your blog is great, so honest.

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Lizdeflores · 03/11/2020 13:03

I'm sharing some information I found out today I hope it might be useful to those with young children.
My ds was due to have the flu vaccination at school. Kids are given the nasal spray which is a live vaccine. The school nursing team advised me to speak to my oncology team as there would be risk of him passing infection on to me(I'm still going through chemo). I spoke to my CNS who said no he should not have the vaccine unless I could isolate from him for 2 weeks. He can have the deactivated injection (we have to get that through the gp).
I hope others might find this useful. I'll be on Amazon this pm looking for Lego to ease the pain of the needle.

TopOfTheCliff · 03/11/2020 14:13

@AlbertCampion I love your blog too. My heart goes out to your 7 year old who has been so stoical so far. Keep writing!
I am feeling a bit weary now. My DH has been so pleased with me for not succumbing to despair over my broken leg and delayed chemo but I am hobbling around so slowly and am completely useless at home. The holiday cottage I booked for after chemo finishes will have to be cancelled due to lockdown. It’s all a bit shit frankly. And today was premium bond prize day and the winner of £1000000 this month was a lady from Devon and by rights that should have been me! The good fairy should have seen to it. Sulking now. I didn’t even win £25
I’ve just had a letter saying I will be on bisphosphonates next year too. I guess the broken leg has convinced them I am a frail old lady. I’m not I’m a fearless pirate queen and there has been a misunderstanding somewhere! I can’t even go and see my pirate ship due to lockdown. Bah!
I hope the rest of you are feeling less grumpy than me and pain control is good.
TopO

Starmer · 03/11/2020 15:29

@Lizdeflores - that's interesting. I had the same conversation with my oncologist a few weeks back, as I had had the school forms re. nasal flu immunisation. Mine said that I could get the injection for them (I've decided against), but thought 2 weeks was excessive, as I have had my fly jab already so will have some immunity. He just suggested avoiding kissing etc for a few days (will be tricky - I have very kissy children!) and - wierdly - suggested DH could take over some of the household chores! English isn't his first language, so that might have been lost in translation somewhere, but I am fully committed that bit. Possibly for the full 2 weeks!!

Lizdeflores · 03/11/2020 16:44

I think you should push for more than 2 weeks. The CNS said that they had been asked the same question before and they had been given their guidance from the pharmacist. I'm still waiting to hear back from the G P about the injection and if they will do it.

Acinonyx2 · 03/11/2020 17:49

I started reading that 'Smile or Die' book while waiting for my MRI. Did make me smile. (MRI - another truly weird experience - like being abducted by aliens.) We can have a thread book club.

@TopOfTheCliff You have definitely earned the right to be grumpy - feeling a little dark myself. Not surely I'm really a ray of sunshine at the best of times though. Sorry about your holiday cancellation - it would be so nice to be able to book things like that as treats to look forward to and be confident they will actually happen!

Thymeout · 03/11/2020 18:14

@Apocalyptichorsewoman
Just caught up with your post. Takes me back to when I was in your position. A faint in the middle of root canal ended up with referral to Gynae, scans and blood tests. (Via a trip too A&E when dentist called 999 but the junior doctor managed to miss the 2 kilo tumour which was taking up most of my abdomen. Tbf, I'd missed it, too. Thought that it was the natural consequence of being lazy about pulling my stomach in.)

First, don't worry about the Ca125. It's really not v reliable for diagnostic purposes as it can be raised for all sorts of other things and also some women with ovca have normal scores. Mine was 130.

But there's a tick-box index and, along with your age and what sounds like a 'complex' cyst, it qualifies you for more investigations. Which is good, but scary. I got an MRI, too, and later a biopsy, because everything was coming up 'inconclusive' and, v luckily, the gyne dept at my local hospital was being overseen by the experts at St Thomas'.

An MRI is much more detailed than an U/S. (I sympathise, because I nearly fainted in the middle of that, too. Had to press the alarm.) And more expensive. So the likelihood is they don't know yet whether it's cancer. It's the pathologist who has the last word on that.

In my case, I was transferred to the experts, had everything gyne removed along with the tumour and diagnosed with a Borderline, 'cured by surgery'. It was a monitoring scan for that, 5 years later, that picked up my colon cancer.

Now I've emphasised your positives, because I know that's what I'd have wanted to hear at your stage, but, sadly, Bridget and Liz had different results. You just can't tell. I held on fast to my GP's comment, 'It's a v good thing that you're feeling so well'.

They'll want to take it out, whatever it turns out to be. Make sure it's a gyneoncologist who does the surgery. Everyone says it really does make a difference.

And I'll be thinking of you tomorrow. Flowers And a carrot for the horse.

KentishMama · 03/11/2020 20:05

I've just about caught up, I think!

@gillmoregirl, I think your family is actually handling this really well. You're communicating, supporting each other - that is the best you can do xxx

@AlbertCampion Loved reading your blog, you write incredibly well. Did not love the lost specimen or having to let go of the beautiful puppy, but you did the right thing. Sending hugs!

I had my final EC yesterday and I'm feeling surprisingly well today. Don't want to jinx it, and I know for a fact that I'm going to crash on Friday and Saturday, but I'm going to enjoy the fact that I'm not feeling horrendous yet! On to Paclitaxel after this cycle, and hope it's kind to me!

Love to all!

Apocalyptichorsewoman · 03/11/2020 20:59

@Thymeout

Thanks so much- it's just what I needed to read right now! Thanks for your long and thoughtful post. My mate, Kate, is coming with me tomorrow, so they may let her in, so at least I won't be on my own.

I have my notebook and pen, and I'm writing down questions 😳

Went to see the horse tonight, and spent ages faffing with him, and cleaning my tack. The stars were out, it was quiet, dark, and I was the only one around - it was lovely!

Thanks also @Bloodybridget for the welcome, and anyone else I've missed!

I'm going to have a read and catch up with you all...

AlbertCampion · 03/11/2020 21:27

Thanks for all the kind comments about Cobweb and my blog generally. I find writing very therapeutic, and I started it as a way to avoid having to repeat myself to the many people who asked how things are going. Now I can just give them a link.

@Acinonyx2 I am so sorry to hear about your husband and the timing of all that happening. It must be incredibly tough. I am leaning so much on my DH - I can't imagine what it must be like to be worried about him in addition to your own worries. Thanks

FizzyOrange · 03/11/2020 21:54

@Apocalyptichorsewoman I'll be thinking of you tomorrow and hoping they let Kate in with you.

@Acinonyx2 also so sorry to hear about your DH and the lousy timing of it all.

@KentishMama I'm pleased you feel well, that is good to hear. I have a question about chemotherapy. Do the side effects tend to come when you are on the 'rest weeks' or do you have them on the same days as your chemo days?

Well, I got through the biopsy and drainage and you were both right, @Thymeout and @Lizdeflores, it wasn't too bad. The worst part was the sticky patch they used to attach the drain which kept pulling on my skin every time I moved and made feel as though it was coming out. The doctor seemed to want me to stay overnight whereas the sister wanted me to go home once the drain stopped. I have come home and am the most flatulent I have ever been tmi. At least it is over with - now I have joined the next mental queue as I wait for the results.

Thinking of you all xxx

KentishMama · 04/11/2020 08:33

Hi @FizzyOrange, I think everyone is a bit different with side effects, and it very much depends on your specific chemo regime.
I'm on accelerated EC, every two weeks, right now. My typical cycle is: Chemo day is pretty grim and I feel nauseous and out of it. Then the next three days have been variable. In two cycles I felt nauseous and weak, and in two I felt pretty okay. Then the two days after that I crash completely and just snooze. And the following day it slowly gets better, and like clockwork one well after chemo I'm back in the land of the living. Not feeling amazing, but able to think clearly and potter around the house and work from home.
But some people on the same drugs get next to no side effects, and I know some who are floored by it for a good ten days. Confused

Not sure if this was very helpful!

Lizdeflores · 04/11/2020 08:37

@FizzyOrange I'm glad it was ok and I hope the drainage brings relief, I think I had about a 2 week wait for results.relief

I have a telephone consultation with my oncologist today hopefully they will have some pathology results back. I hate telephone consults I find them awkward and difficult and I find myself in a rush to get off the phone and I forget all my carefully planned questions in my panic to end the call. I also forget what I've been told. I never had a problem with this in my professional life, I'm a psychiatric nurse and a lot of my job would be talking to Drs ,reporting on people's condition and discussing treatment plans, quite often over the phone.

Cancer has changed me and I don't like it.

Bloodybridget · 04/11/2020 08:46

@Acinonyx2 I had completely missed your post about your DH, that is such a huge complication you could all do without. Wishing all the very best to him and to you all. Have you got a few people you can call on when he is having treatment? Obviously Covid complicates everything.
@TopOfTheCliff everything is very shit! Being so incapacitated is rubbish - and losing your planned holiday - and on top of it all not winning the flipping Premium Bonds, outrageous! Hope you have a few lighter moments today. How's your appetite? Cake any good Cake ?
@KentishMama congrats on finishing EC, hope you have a good few days now. How long till you start paclitaxel?
@FizzyOrange when I had chemo last year, I was generally OK for a couple of days after treatment, then plummeted, then for the first few times had a few days, maybe a week, of being pretty OK before the next session. Will you be on a three-week cycle, what drugs will you have? Glad the biopsy and drainage are done and that you got home, how are you feeling today? My farting has been legendary since I had my hysterectomy (which included a bit of bowel surgery) but on the whole I can control it when necessary.

My first chemo has been moved forward to 16th, I'm pleased although I had hoped for next week - it's still 11 days earlier than originally scheduled.

Wishing everyone as good a day as possible. It's cold and sunny in London, but I see a huge dark cloud in the west . . . Sad

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KentishMama · 04/11/2020 08:54

@Bloodybridget What's your chemo regime going to be? Apologies if you explained already... In any case, good to hear it starts quite soon, then the wait is over! And we can be chemo buddies on the 16th, that's when I start Paclitaxel. I'll do that as the accelerated dose dense version too, so every two weeks for four cycles.

Bloodybridget · 04/11/2020 09:02

@KentishMama, I had carboplatin and paclitaxel last time; this time it will be carboplatin and liposomal doxorubicin, which fortunately has the brand name Caelyx, as I don't think I will ever remember it. This is the standard second time around treatment for ovarian cancer that has responded to a platinum therapy the first time. It's a 28-day cycle, six treatments. Will be nice to have a chemo buddy! Are you Kentish because you're in Kent?

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KentishMama · 04/11/2020 09:11

@Bloodybridget Yes, I'm in lovely Kent! Not too far from you in London, and in normal times I would be commuting to London several times a week. I'm much happier working from home though and hope I'll only commute in on one or two days a week when COVID-19 is over. :)

I'm secretly hoping that Paclitaxel is a bit easier than EC. The nurses keep telling me it is. Part of me thinks I'm jinxing it though and shouldn't hope for too much!

TopOfTheCliff · 04/11/2020 09:26

@Bloodybridget I’m glad to hear you have a plan. That always helps.

@FizzyOrange I hope you are more comfortable after the drainage.

@Apocalyptichorsewoman fingers crossed for you today at the clinic.

I cheered up yesterday after my favourite Vet dropped in with a tin of quality street and we pigged out on cheap chocs.

Tonight is cycle club pub night and DH has offered to come back and fetch me in the wheelchair so I can join the gang for a last drink before lockdown. I’m unreasonably excited.

I hope you all get on okay today. Trump or no Trump.

Bloodybridget · 04/11/2020 10:35

@KentishMama the doctor told me Caelyx is easier to tolerate than Paclitaxel! I think a lot of my issues last year were down to bowel surgery rather than drugs.

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FizzyOrange · 04/11/2020 12:15

@KentishMama that is helpful to hear, thank you for that. It is useful for me to be aware that it is different for everyone, without having set expectations.

@Apocalyptichorsewoman hoping today goes well for you and that they let Kate in with you.

@Lizdeflores I am hoping your call with the oncologist goes well. I find the opposite with these calls, I feel the doctors are in a rush to get rid of me when I am seeking more reassurance which can't really be given. I find myself getting so nervous before the calls that I am barely capable of coherent thought and find myself rambling on to them which they must find annoying. I too feel that cancer has already changed me and I don't like it, perhaps this is part of the 'battle' everyone talks about?

@Bloodybridget thank you for that, that is helpful to know. I am feeling relieved that I have got yesterday out of the way and now that I am free of all the fluid, can eat and drink so much more easily. I don't know what chemo drugs I will have yet or the length of the cycle. That is the next step for me. I have now joined the next queue to wait to be called in for the verdict of the biopsy. I still am enormously flatulent though with real power trumps so hope this isn't a long lasting effect of the drainage lol. I'm pleased your chemo has been moved forward but that must be disappointing that it isn't next week, I would be the same and keen to get on with it.

@TopOfTheCliff oh yes thank you, the relief is immense. When they were moving the bed up yesterday for my drainage my poor front was like a water bed sloshing around. I feel embarrassed to be in this state and feel self conscious about my body, do others have issues with this?

I feel really anxious and tearful today though, just really sad about what the future holds for me and my daughter. I'm so pleased to have all you lovely ladies who understand though. I've already had my first text of the day from the PP instructing me to 'keep positive' so am ignoring that for the moment Hmm

iVampire · 04/11/2020 14:58

DD is a teen and so by age would get the sniff, but gets the jab to remove the risk completely.

I think it depends on the nature and extent of your current vulnerability. If you have a blood cancer, or are actively on treatment for most other cancers, then they’d say jab. But if you’re on a break between bouts, it might stack up differently - the risk is so low it can be ignored for all but the very wonkiest

I witnessed the vampiric equivalent of panic buying yesterday. The drop in phlebotomy clinic was rammed and saying 3 hour waiting time. I had to sit through it as test had to be done this week and yesterday was the only day with a dogsitter. A lot of people gave up, so the wait was only about 2 hours, but I got in the chair only just before the lab transit deadline. Madness!

I’ve just had a text from the council with update on shielding services. I knew my cancer is only the ‘automatic’ qualifying list, but this looks like official confirmation.

Bit fed up of it. Easier this time as outdoors exercise OK. But I’ve enjoyed chatting to other dog walkers and I suppose I should be cutting that back. But awkward - socially for me, and more importantly for DDog who will want to dash about with her friends as usual

TopOfTheCliff · 04/11/2020 19:19

@FizzyOrange I know exactly what you mean about being embarrassed and self conscious. I look in the mirror and see this bald fat ungainly pale old person who doesn’t look like me at all. Now I am in a wheelchair and can’t even walk it’s like a strange nightmare. The only way to cope with it is to make stupid jokes or to cry! I do a bit of both.
You’ve made me think perhaps I will put on some makeup and The Wig for my pub outing tonight. And eyebrows!

Have a good evening all

Lizdeflores · 04/11/2020 20:17

I feel self conscious about my body at times and my bald head . When I was first diagnosed I felt deeply ashamed of my body and the fact that it had let a cancer grow in it. That has changed as time has gone on and I'm even starting to feel a grudging admiration for my body, look what it's fighting back from (sorry to use a battle analogy). My son enjoys playing bongo on my head.

I had a consultation with my oncologist today I will restart chemo in 3-4weeks and they will start me on Bevacizumab at the same time which will continue as a maintenance when the chemo finishes. I also had a stage 2 response to the chemo which is 'encouraging '.Seems like positive language to me I'm feeling very encouraged and had a glass of 🍷 x

Acinonyx2 · 04/11/2020 20:51

@FizzyOrange I do feel physically decrepit. The endless parading of my bodily parts doesn't help.

@Lizdeflores The phone consults do have a rushed feel to me - I feel rushed in myself and not as present.

Dh has been incapacitated and mainly in bed recovering hoping he will revive soon! We take turns to cook and he had a rather ambitious meal planned while I took DD to a club and there was nothing really easy to hand. So I said I'd just do the shop near dd's club in another town and get ready meals while out. But when I went to pay - I had left my purse at home. And I had left it because I had taken it out to use the card with the nurses' phone numbers - to ask about chemo on Monday. I had one of those moments walking back to the car - like you might just lose the plot and start screaming.

So I drove back home got purse and went back again. The ready meals were quite nice. GP called dh while I was out and sorted out some meds and tests for him.

I was thinking - dear god how will we cope if we are both sick? But I suppose it happens and you just do. I feel like a pot simmering with the lid shut on tight - I think one of these days some small thing will happen - like the forgotten purse - and I will just lie down like a toddler and thrash and scream.

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