Cancer Support thread 86 - Stay Positive

[LemonDrizzle10]

New thread as other one nearly full.

@Chocolateismyfavourite That's fine, I know what you mean! I did actually had a fast growing ovarian cancer in addition that my hospital missed. Not sure whether they'd have done anything any quicker if they knew. They messed up my first ultrasound scan too (the sonographer lied and told me she'd got everything and didn't need to do an internal scan when in fact she'd not got a picture of one of my ovaries - my scan appointment had been moved hospital on the day and put right at the end and everyone wanted to go home) adding three weeks delay before diagnosis, then the hysterectomy thing was blamed on lots of bank holidays over April / May, then my chemo was delayed because one oncologist refused to have a conversation with me about changed guidelines and told me I needed to see someone who was on holiday for three weeks. The whole thing has been terrible. I'm self-employed and managed to earn practically nothing during most of that period because I couldn't plan anything. I've been considering making a complaint but think I would just end up more stressed and I still have to deal with the hospital. All these things felt worse than actually having the cancer itself! It's still like that now tbh, I worry more about how I'd organise my life on a day-to-day basis with such an inflexible system more than actually dying if it was to recur.

@Whattodotomorrow , I had extremely painful spots by my 3rd chemo and the nurse prescribed dermal 500 face wash and zero base moisturiser and they cleared right up and now, a year on, my skin has never looked better!
Might be worth mentioning to your chemo nurses?x

@SierraSapphire wow that sounds awful, it really does, everything is so bloody stressful isnt, organising everything, never mind having the damn cancer. I'm self employed too, so I know exactly what you mean.

Thanks for the spot advice @bringonyourwreckingball @Podgedodge

They are really quite sore and my 3 year talks about my spots every time she looks at me. The spots must be making an impression on her as she told her preschool teachers for the first time today that mummy isn’t very well. I had a bloody good cry over that. Fucking hate this shit.

First chemo done! It wasn't too bad, I had a bit of a moment when I was first taken to the day room and got a bit teary - it hit me in a way that the radiotherapy treatment didn't emotionally.

But miffed as my mum was due to come and cancelled last minute. I could have had someone else come if she hadn't left it so late so ended up going alone. It wasn't too bad though, just read my books and radiotherapy broke it up nicely.

Lots of weeing though - they put lots of fluids through me on top to protect my kidneys. Deffo glad I didn't get the bus! At least the train has toilets.

Well done @ClashCityRocker the first one is the most frightening as you don’t know what to expect. Next time will be much more manageable. I had to go alone to all my sessions but if I had expected family support I would be disappointed if they let me down.
I have had a splendid 48 hours feeling fit and energetic clearing out MILs conservatory as a 90th birthday treat for her and taking loads to the recycling centre. I set about the weed bed that is my allotment and I was also doing some sports training at my club in the sun teaching beginners. Tonight I took my first dose of round two oral chemotherapy so I expect I won’t feel so lively tomorrow. It was nice while it lasted.

Well done Clash Its worth doing a daily symptoms diary as they tend to be a repeating pattern and you will then know your likely better or worse days for future cycles which helps you plan nice things.

Well done Top

Good to see you enjoying your holiday WorryMcGee

Hello I would like to join if that’s ok. I’m 55 and was diagnosed with bowel cancer in late Feb. I had surgery in mid March to remove the majority of my colon (because it’s a genetic cancer and is likely to recur elsewhere in the colon). It was a tough surgery and the recovery was challenging but I came through it really well. I am on a low fibre diet while my body adjusts so while many people are doing organic veggies after a cancer diagnosis I’m eating the white food toddler diet!

They also removed a large number of suspicious lymph nodes and found cancer in one of them. So while I am now cancer-free after surgery the recommendation was to have chemotherapy to reduce the chance of recurrence from 40% to 20%. I’m doing 4 x 3-week cycles starting with an infusion (oxaliplatin) and then 14 days of tablets (capecitabine), have a week break then start again. Today is the first day of my break - yay!

So far I’ve found chemo pretty manageable and my side effects haven’t been too bad. So my diet of mashed potato, hot chips and Madeira cake hasn’t impacted me too much lol.

I’m in Australia so if it seems like I’m posting in the middle of the night I am not!

Thanks guys

Glad you've had a better day Top.

That sounds a good idea Silkie, I will do that!

Welcome @Remaker to the thread that no-one wants to have to join. Glad the surgery went well and I am sure you'll get lots of support on the chemo side here.

@SierraSapphire how did the hospital find out they had missed your ovarian cancer?

They were told by the Royal Marsden @Scandimandy when I went for a second opinion when I thought that my hospital was recommending unnecessary treatment because of new research and change in guidance that they appeared not to be taking into account. If I hadn't paid for a second opinion I would never have known. My hospital didn't say anything at all to me, no apology or explanation. It was only a tiny spot, but they also missed two other things that the Royal Marsden picked up. It's the second time that that hospital has missed something, it happened on a brain MRI as well a few years ago, something that was only picked up when I went to another hospital again for a second opinion. I wish I could change hospitals, but as I'm single I rely on lifts and support from friends who live locally, which would be more difficult if I changed.

How much does a second opinion cost? My consultant is an expert in my kind of cancer of the unknown primary but I do wonder if another team could just look at my numerous scans they might just spot a little primary somewhere. Do you have to go through all the scans again?

@SierraSapphire that is actually quite terrifying! How did you go about getting a second opinion on the NHS? I really don't like one of the Dr's I see, sometimes its her and sometimes its a consultant who I really like. I think the Dr holds back information, I have no idea why she would do that but when I see the consultant she always thinks the Dr has told me something when she's said nothing in effect! I want to have her removed from"my team" but am too scared to ask in case it reflects badly on me.

@EachandEveryone and @Scandimandy I think I paid about £500, there was the hospital cost, consultant cost, and then pathologist cost. If you go private then it's referral through the GP and if you want a second opinion through the NHS I was told it was my consultant that had to refer me. They just went through the slides from my hysterectomy that were done from my original hospital rather than needing to do any tests themselves. When I went for the second opinion I knew in theory that they might find something new, but I didn't actually expect it to happen. It was horrible. I was with a friend and we walked all the way from the Royal Marsden up to Kings Cross whilst I was basically just too shocked to speak. It's unpleasant not trusting your medical team, and I've seen research saying that it does affect your outcomes. The CNSs weren't sympathetic to me either. I'm feeling anxious at the moment as my blood results, including iron, B12 and white blood cells are still low, but I don't feel comfortable calling anyone at the hospital because of their treatment of me (I am seeing the GP though).

This is very sad @SierraSapphire I'm not suprised if not trusting your medical team affects your outcome, it must be quite debilitating having to question everything they tell you and then wonder what they may have missed. I can be a bit bloody minded so I would be tempted to call the hospital a lot just to upset them! I know they won't actually get you anywhere thuogh. have you contacted PALs at all?

I posted the other week but didn't come back sorry. Had my first chemo of C&P last week. Had 4 days of lethargy, tingly feel and fingers, some nerve pain but now just a sore throat. 2 weeks tomorrow till the next one. Been having a nap every day and taking care of myself.

I did speak to PALS @Scandimandy when the first oncologist threw me out and discharged me when she refused to answer my questions about chemotherapy. I've got a recording of it all so I could take it further, but I just don't know what it would achieve, and people who've gone through the process just tell me it's a lot of stress. It is at the back of my mind though to still do something about it.

@SierraSapphire OMG I would have been absolutely flippin fuming about being kicked out and discharged. I don't think I could not take it forward. That Oncologist could be like that with everyone who comes in the door or they could have been having a bad day but unfortunately for them, they have taken on a career where behaving like that is just not acceptable. At a minimum their line manager needs to be aware. Perhaps save it all for when you are better and feeling stronger though! I'm not happy with one of my Dr's at the hospital, I've seen her twice now and both times I've felt she was trying to get rid of me asap and wasn't telling me everything, as a result I don't trust her. The consultant however is absolutely lovely. As much as I am advocating taking things further above I'm too scared to ask for that particular Dr not to be involved in my care unless it results in negative treatment for me.🙄

I've had to cancel a booked trip to Antigua for this Sept as I have no idea where I'll be in the treatment - don't even know what treatment I will have yet as STILL having tests and having to wait weeks inbetween. I was diagnosed on 20th April, I have an second ultrasound booked for 22nd May, if they need to take another biopsy that will be another couple of weeks and then they said 31 days wait for surgery, I'm definitely going to miss that 62 day guideline. Anyway, its at BA's discretion if I will get my deposit back and they require a letter from my GP. I think my GP feels sorry for me cos he hasn't charged for the letter!! Luckily I got a quick birthday trip in to Marrakesh over the coronation weekend, fabulous place if anyone is looking to go. I can highly recommend the airbnb and we stayed in but avoid Ryanair 😬

@Scandimandy I was with a friend and we were both just incredulous at the time, it was absolutely bizarre. She told me to go back to the surgeon but then when I saw a second oncologist he said he had no idea why she said that, they were the best people to speak to me. I am still outraged. Even with a letter from the Royal Marsden saying that I was right the hospital is still not acknowledging it, but it's exactly as you say, even if I don't end up getting worse treatment, the fear of it is there and I'm not sure I want to taint every visit with that. I'm sorry you've experienced difficulties too, I think there are a few of us unhappy with responses. Thanks for asking about it and sympathising and being outraged on my behalf, that does help!

Welcome @Remaker, and sorry you find yourself here.

I have just been to a funeral and may have let my short fuse show when an elderly acquaintance I haven't seen for a while said 'oooh, you're looking nice and slim'. Perhaps saying 'well, I wouldn't recommend cancer as a weight loss strategy' was a bit harsh. But honestly, some people need to think before they open their mouths.

Hello. I posted on here a few years ago under a name change and received some fantastic advice and support. I had surgery and radiotherapy for breast cancer and have been cancer free for the last 3 and a half years. I just take Tamoxifen and have yearly mammograms. My last gram was in February and was clear. So I was really surprised and now really worried to receive a letter from the breast clinic giving me an appointment in a few weeks time. No explanation for what the appointment is for or what it's about? My husband thinks it's just an admin error and not to worry, but I know I'm going to have a sleepless night until I can talk to the clinic tomorrow. Can anyone on here make an educated guess as to what this appointment might be for? Thank you.

If it’s a few weeks time @Bookist it’s not likely that it’s anything really worrying or they’d be getting you in sooner. It is a bit of a mystery though!

@dotty2 oh dear! I’ve just been to see my DM and she said a few times I looked good since I’d “cut” my hair. I did point out that I hadn’t cut most of it, it had fallen out. I think she’s a bit confused though, she used to compliment me on my wig as if it was my hair 🤷‍♀️. It’s 30 years ago now but someone commented that I’d lost weight and I said it was because I couldn’t afford to eat, and she said “Well you look good on it” 🙄. Still, I guess we’ve all gone home and kicked ourselves for saying something stupid!

Thank you for being reassuring @SierraSapphire . The appointment isn't for another three weeks but I'm baffled what it's for? I've not had any other contact with the clinic or any other tests done since my gram and that was clear? I just don't get it?

@BookistCould be research/trial related, a review of medication for some reason not connected to individuals, a mistake? I do wonder whether staff realise how worrying it is to get these letters! We were commenting earlier up the thread about fear of the post!