Cancer Support Thread 89 - the best thread that no one wants to be on.

[LemonDrizzle10]

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Definitely get that wound looked at as soon as you can @CoachBeardsJane

Another dog pic - the pest pup now 8 months old.

Loving the dog pictures! They remind me of how much I am missing my own princess but we are home on Sunday and she will come back on Monday.
These stories of Covid delays and misdiagnoses are truly shocking. I’ve been reading Rosamund Dean’s book Reconstruction based on her own breast cancer journey in 2021: Covid made it so much harder for her and her family.
Gearing up for what next week will bring. Finding it hard not making plans until I get a feel for how I will be affected by chemo, but I guess I’ll find out soon enough.

Totally get the feeling it hard to make plans @Florabritannica . I've had to cancel three holidays since my diagnosis last September, despite my surgeon assuring me on each occasion that I'd be fine. Currently planning a long awaited trip to New Zealand, but booking everything on a cancellable basis. This last twelve months has been a real hit to my confidence. Good luck for next week.

@CoachBeardsJane I would definitely try and see someone today - nothing will happen over the weekend and it sound like you will definitely need help.

I enjoyed my first bath for 12 months yesterday - surgeon told me to avoid for eight weeks post surgery - not sure if that's general advice, or because I've had such a game healing since my original surgery last September.

Sending well wishes to all.

I’m sorry to hear so many stories of missed and delayed diagnosis. The positive aspect of having a familial cancer is as soon as I had symptoms it was straight to colonoscopy within a few days.

I had a post-chemo appointment with my oncologist today. She and her registrar were all ‘yay you made it’ and I think they were expecting me to be more upbeat. I still have to have a CT scan in 3 weeks, some more blood tests to check if my liver function is returning to normal and surgery to remove my portacath. Not to mention a hysterectomy as I’m at risk of ovarian and endometrial cancers. Is it any wonder that I don’t feel like it’s ‘over’?

Oops I forgot. No dogs here but these two rascals keep me entertained (and warm).

Honestly, I’m very happy with the treatment I received. Yes there was a delay due to Covid but that was beyond the control of the medics, including my son in law, who were already doing and seeing the most horrendous of things during that time. But once I saw the initial doctors in my local polyclinic I was then given an appt within days at the local hospital and everything including my surgery was done within a couple of weeks. It was fast fast fast.

I’ll be forever grateful to the team who looked after me including my daughters classmate/friend who looked to young to be doing what she was doing and the gynae oncology consultant who removed my watermelon without bursting it and putting me into a stage 3 on the table instead of the 1a I was given. My cancer is very rare and should it come back I will never have the treatment options available to those with other cancers. So she really did work a miracle as far as I’m concerned.

Shit happens in life and when I think of Covid I think of my daughter, her husband and their children aged 18 months and 2 weeks old getting Covid after her husband brought it home from the hospital he was working in. It was terrifying, way scarier than my water melon being missed on the ultrasound. I don’t think I’ve ever been so scared as when they went into quarantine after refusing for me and my co-granny to go into quarantine with them. It was awful, we knew how real it all was and at the time they were I’ll my son in laws colleague who he’d been on duty with was fighting for his life in ICU.

I do think it would have been preferable to not have had appts cancelled but I’m not angry.

people have asked if I knew I had a watermelon residing in my tummy and the answer is no. I was going through weight loss due to weight loss surgery and I thought my tummy fat was being stubborn whilst everything around it was co-operating. I knew nothing about the cyst.

@Crimsonbow - I had that kind of surgery. A full staging laparotomy. The removed my 6kg watermelon, my uterus, fallopian tubes, ovaries, cervix, appendix, some lymph nodes and the lining of my abdomen - the omentum. Basically everything I could do without as if I did have a recurrence it usually comes back in the abdomen. It’s not so bad as surgeries go and my recovery was good. All the best to you.

@Remaker that’s exactly how I feel. Every time I get my breath back something else happens.
I’ve already had a full hysterectomy but would have probably ended up having one - because of BRAC1 anyway. I have to say that, that surgery was easier for me. This masectomy and lymph node removal has been much more challenging. I think it’s partly the inside/outside thing. I also think maybe it just heals quicker inside the abdomen. Also probably the psychological effect of knowing that pain would be reduced - which it has been.

I just wonder if I’m ever going to be free of the anxiety of it popping back up again somewhere else. I’m going to have some counselling from a recommended psychologist who deals specifically with people who have been through cancer.

The one thing that’s really helping at the moment is watching Succession - I completely forget about everything!

So many beautiful animals. I love them all!!

@FairyWren7 I totally relate to you feeling just when you get your breath back something else happens. It seems like you steel yourself to endure something, like chemo or surgery or radiation, then when it’s over they say “Oh we think you should do this thing now”. I had just picked myself up after round one 18 months of treatment and got fit when I had to start all over again. I don’t think I will ever trust my body again, and I won’t celebrate finishing treatment because I’m convinced it’s just a matter of time till I have to have more. But I can still enjoy my life and have happy times even with this looming over me. I don’t think seeing a counsellor will take the feeling away because it is rational and based on experience.

@TopOfTheCliff I’m glad you’ve said it’s rational. I’ve been thinking that. I wonder what anyone can actually suggest rationally that will stop the anxiety?
I’ve had some counselling in the past, including I think it’s called EMDR basically tapping that is supposed to help with traumatic memories and you say something where you acknowledge what the issue is and say something accepting about it. I’m not convinced it helped that much. I’ve actually completed a counselling adolescents course myself because I wanted to try and support the students I taught during and after the pandemic.

I’ve booked in for a meditation class next week but now have an appointment with the consultant 30 minutes after it so I don’t think I will be relaxed. And the art class I wanted to do was chemo day! Will hopefully do the next one.

My biggest problems in life have all stemmed from health issues, there isn’t much you can do to fix those with counselling. But maybe positive thinking, more exercise and more salad. We are a sugar free household now…I say this, there is no sugar or products with sugar in the house. But I did have an icecream when I went to see Barbie this week!

If anyone has any ideas or successes please let me know…

@TopOfTheCliff I'm also glad you say it's rational. I have a 70-90% chance of recurrence and have monthly blood tests for my chemo which include my CA125. It's a 4 weekly reminder of how precarious things are. I've been offered counselling for my anxiety but no-one can make me think differently. Also, and this might be a silly reason, I don't want any more appointments than I have already as that further rams it home that I have cancer.

@FairyWren7 my oncologist assured me that I will find a laparoscopic hysterectomy a walk in the park compared to my colectomy which required a full abdominal incision and ten days in hospital. My 87 yr old mum had one a few months ago and bounced back really quickly so I’m confident it will be fine. It’s just having another surgery hanging over my head with all that entails and the pressure to hurry up and have it done before I get another cancer.

@Fantasea I get where you’re coming from about counselling- I tried to get some because we’ve been coping with a psychiatrically ill daughter for past few years. I won’t completely go into detail - but her beliefs about me have caused repercussions and life has been extraordinarily stressful the last few years.

As previously posted -I was turned down because I said I was coping with having cancer. Partly because you get a ton of sympathy for having cancer and people are suddenly really nice to you.

I’m not sure the counselling would have helped. I have a brain, I can read books that help, or some of the many sites have huge amounts of info and perspectives from Psychologists. Without seeing someone who’s done a 6 week counselling course

One thing that does help is putting a different perspective on things. I don’t know if I’ll last at this - but I’ll be on monthly Ca125 checks too as my cancer will very likely come back- so I need to try and see this as a good early warning sign.

Life has changed forever and we need to find ways of living around our problems.

I wouldn’t want any more appointments either. I turned down one with my oncologist because it was purely him checking patients before he went on holiday. Neither of us needed the appointment

@ClashCityRocker did you get to see or speak to someone?

13/18 is done. I'm quite tired today, think an early shower is in order 💤

I seem to have accidentally unsubscribed myself from this thread. I was beginning to wonder why I got no notifications. Had everyone gone away on holiday? Well, I now realised and have just been trying to catch up.
Cannot believe some of the stories of misdiagnoses. How can they miss huge masses on imaging! Very sorry to hear all of this and the delays it caused to many of you.
As to @CoachBeardsJane what a story! From hospice planning to a full life ahead of you! Fabulous to hear but what a mess with your head. Well done for persisting with the trial.
@Topofthecliff sorry to hear you have a scan coming up. Uncertainty is really hard. I fluctuate from able to distract myself to being on the verge of fainting with fear.
I have considered psychological help but am, like others, unsure what it could offer. Strategies perhaps for living in the moment rather than always looking ahead. I'm not good with focusing on today.
My own uncertainty continues. Had an US of lump in my arm (same side as BC) a week or so ago. An abnormal looking lymph node but probably reactive I was told. Had a FNA last week which removed fluid suggesting (to the radiologist's surprise.. Presumably it did not look cystic on US) it was cystic. Cytology report only revealed fluid in sample. None of the solid part was aspirated. So, everyone is saying it is reassuring but can give no guarantees. And now, one week later, the lump is right back to the size it was before the fluid was removed! I feel sick. The oncologist said on the phone that it had reduced in size after biopsy so was reassuring but it now hasn't as it has grown right back.
How does one live like this? I despair. Now also have zapping headaches, the occasional cough, etc. Going through chemotherapy and wondering whether it is actually working.
Very best to all who are struggling with everything.

Thanks @PollyThePixie - hopefully just the one ovary and tube for me, plus the lining they mentioned is the omentum I think. They did ask if my family is a complete because they may end up taking both ovaries. I said yes, because I think it is, but I don't like the idea of that choice being taken away from me. We'd decided not to look at DH getting a vasectomy to make sure we're sure.

Your cats look like they like each other @Remaker ! My two don't typically but this is an old photo.

Isn’t it just that the cyst has filled up again @isaxx if it hasn’t been removed, I don’t think that would be particularly surprising behaviour for a cyst, plus Top’s reassurance that lymph fluid doesn’t go in that direction, plus didn’t the radiographer also say it’s not something he’s seen? I get it though, it’s still not definitive and thinking you’re going to have an answer and then not is horrible

@SierraSapphire much appreciated reply. I realise that I am tending towards the dark side. As you say though it is the lack of definitive answers. Uncertainty is driving me insane and the past few months have really not helped transform me into (or back into) an optimist. I see only the gaps, the 'glass half empty', the 'low odds'. My partner is about to come home from an evening out (didn't feel up to joining them) with an old friend of ours. The friend is staying over for the weekend, so I will have to pull myself together to receive them any minute now. The key will be to talk about them, not me! Wish me luck in finding my inner old happy go lucky self. Will need to keep that up also for our daughters' return from their summer holidays with friends in the next couple of days. Being on my own with my (very indulging) partner for the past week has really allowed me to wallow in my misery.

Loving the doggo pictures, I’m allergic to some breeds of dog so we have a hypoallergenic version. Sadly I’m allergic to all Cats though.

@Fantasea and @RedRosesPinkLilies I'm also on monthly ca125 checks I've already had one reoccurance and started Niraparib in June. I avoid finding out what my levels are as I feel that if I was constantly monitoring my ca125 it would increase my anxiety. I leave it to my oncologist to do that and to react when needed.
I know my long term survival is limited but I'm trying to spend my energies on living my life now. The holiday I'm on now (medically unwise) has been brilliant and although I hate the term we have made some fantastic memories. My son (10) will be far to young when he looses me but he will remember the summer he learnt to swim and was jumping waves in the ocean with his mum .
I obviously want to be the one to beat the odds and I know when I face more treatment I will be angry, sad,heartbroken and anxious until that time I will try to live my best life.

@isaxx I wonder if what you have is a ganglion? They are soft fluid filled swellings that pop up around the wrist and fingers and ankle joints. You might be a rare bird that pops one up on your elbow. I get them occasionally but they usually disperse again. The traditional treatment is to whack them with the family bible. I suppose a Koran or Torah would work too. Essentially they are a synovial cyst coming from the lining of the joint and are harmless but annoying. Draining them reduces the size briefly but they refill with joint fluid. They can be injected with steroids or surgically removed but they do no harm.

Ive just horrified DH by suggesting I might get a Celtic tattoo after I finish treatment. I need a bit of magic in my life. He’s not impressed 😂 I’m having fun researching them.

Sending sympathy to @RedRosesPinkLilies as I have a bipolar DD who gets very ill sometimes. It doesn’t help much knowing psychiatry when it’s your own family. Happily my DD is settled and happily married and well. She has had some excellent therapy which has helped enormously and taught me a lot too. I love having a wise DD put me right! But it’s been a long journey.

We all have busy lives with family members needing support and don’t have time for all this cancer nonsense! Certainly I don’t want them all worrying about me.

@TopOfTheCliff ive been thinking about tattoos either a fairy wren or a flower perhaps! But I’ve been thinking about it a long time. Maybe we should just go for it!

I meet with the oncologist next week and then will know about the drugs.

Hope everyone has a good weekend!

@CoachBeardsJane did you get checked out? I really hope they’ve got it sorted for you.

A little update on me! Thank you for the support yesterday btw! I rang 111 and they sent an ambulance which was excruciatingly embarrassing but actually i wouldn't have been able to drive drink or not.

The paramedics and the drs in a&e recoiled at the smell so that was nice, I apologised to basically everyone. They took a swab and a biopsy and it is necrotising fasciitis so I had surgery this morning and I am on iv antibiotics and pain killers I feel very lucky as they drew around the wound in a&e and you could see it move across the pen. That's when they decided to take me to surgery.

Anyway it hasn't moved now and it hasn't got any worse. I might need surgery to clean out the wound after the antibiotics have done the job but for now I'm settled on a ward with painkillers.

Thank you x