Cancer Support Thread 93 - The Thread for the Dread and the Not Yet Dead? Everything you need to know about Cancer but didn’t want to know

[LemonDrizzle10]

Shiny new thread.

Went to hospital yesterday
Kept feeling like I couldn't breathe - SATs were 83%

Hosp got it into mid 90s if I sat still and quiet. Bloods ok. X ray showed infection was worse and a tiny pleural effusion. So doxycycline antibiotics to go with coamoxiclav

Came home. Not quite AMA but they were going to keep me in. For what tho? There wasn't any different treatments

The pleural effusion is bad news I think? Not sure what it is - fluid buildup in the lung? - but it's usually the "beginning of the end".

I had thought when chemo stopped, I would get the summer at least, average survival on sotorasib being 7 months. And stopping chemo / immuno was a shock already when bone cancer appeared - and I thought I'd have 2-3 years on that

It's always a negative outcome. Never good news

Oh @Tilllly, that’s utterly shit. I’m so sorry.
I don’t know much about pleural effusion so can’t help you there. I’m glad you’re at home though. If you can take your meds at home, it’s better to be in your own bed I think. You can always ring them or go back if anything changes.

@Whatevershallidowithmylife That sounds utterly shit. Is there anything that can be done to accelerate kidney healing, and no other drugs to try at all? Is it worth talking to someone else at all?

And @Tilllly what is your team saying about this latest development?

Sending a whole load of unmumsnetty hugs to everyone.

@Tilllly @KentishMama
Yes apparently all the steroids to stop whatever is going wrong in its tracks and provided that works they’ll try find me some trials. What is targeted therapy?

oh @Tilllly you must be exhausted. My friend with leukaemia gets a build up of fluid on the lungs due to the medication she takes, and I know how much this tires, and frightens her.

Right, let’s get these steroids started!

Think the new antibiotic doxycycline is making me vomit now! Fucks sake

@Tilllly fks sake just not getting a break 😕

Just wanted to send you a big hug.
Thinking of you. Xx

@Tilllly the crappiness of it all.
You are also in my thoughts.
Hope that anti biotic is kinder to you very soon 🌺🌷

@lucysmam did fav colleague just resign with no notice? What kind of job will you be looking for?

Hi all. I hate getting surprise letters in the post from the hospital. My nerves can’t take it. I had emergency surgery for colon cancer in august. Received chemo for the cells. All good. Signed off from the oncologist. My follow up appointment from my surgeon was supposed to be in January, but I got a call that morning before appointment from her receptionist saying she didn’t need to see me for my follow up. Now this morning I get a letter for an appointment in may. I haven’t saw the surgeon since I was being discharged since August. My first ct scan for colon will be this coming August a year after surgery. I can’t phone my nurse as it’s a bank holiday weekend. Does the surgeon/consultant see you every 5/6 months after colon cancer surgery?

@Shityshitybangbang for me in Scotland it was 3 x 3 months then 6 x 6 months then annually.
Re the letters - ours have ‘safe haven’ on the envelope- fills me with dread every time!

Whatevershallidowithmylife · Today 13:15
Thank you. Yes I’m in Scotland too. It’s the western. I crapped myself when I got the letter with NHS on it. The consultant/ surgeon didn’t need to see me at the start of January. So just received a letter to see her on the start of may. That will be aprox 8 months after surgery.

@Tilllly I am really so sorry to hear that. I'm thinking of you. Hugs x

@Shityshitybangbang have you got a good GP? If so, maybe ask him/her what should be happening? It does sound confusing.

@Whatevershallidowithmylife That sounds incredibly frustrating. That's the trouble with a lot of the cancer meds they put us on isn't it, that they're so toxic various organs in our bodies can't deal with them.

I hope the steroids act quickly and get the problem under control asap and also that an ideal trial can be found that you can start on.

@Alittlewornout Oh no, that's horrible news. I'm so sorry. Thank goodness your consultant is so good and there's a plan. Please let us know how you get on.

@MothralovesGojira I find it totally wrong that the consultant complained in that way about you to your GP. He sounds like a total pillock. He clearly has no understanding of any diversity among patients and no interest or understanding how past experience can influence our reactions or what we can cope with.

The consultant's ignorance and arrogance reminds me of a few years ago when I had an extremely serious but as yet undiscovered (discovered finally in 2022) medical condition, and the consultant pompously wrote to my GP "All results are normal. There is nothing at all to be concerned about and I hope this puts SummerCycling's mind at rest" Er no, it didn't. Finally, about 4 years later it got so bad and the same hospital noticed by which time my blood level of two things had reached way below the critical level. New consultant phoned panicked to say come to hospital immediately. Looking back at the blood tests in the past, the level of one of those things had been too low for YEARS. Luckily, I did recover from that, thanks to two different consultants from two different departments and my phenotype. Years of unnecessary suffering. It was all eye opening to me.

Why won't oncology see you yet? Surely, this is their area? That really confuses me why they're saying that. Would you like an oncology appointment to discuss the overall plan? Would your GP be able to get that for you?

Good luck with your bone scan results. Do let us know.

I hope there's a way for you to start treatment asap, that is compatible with your situation and what you and your lovely family can all cope with. Cancer is cruel.

@TopOfTheCliff how lucky are you starting chemo within 2 weeks of diagnosis both times!!!! I had to wait about 60 days from knowing I had cancer to my first treatment (which was chemo). I also had agonisingly long waits for my initial appointment and all the various scans, results and starting treatment.

I am envious of King Charles and Kate in the way they have access to immediate and personally fine-tuned treatment because it most definitely makes a huge difference, often of life and death. My cancer is grade 3 and hormone-negative, so an extremely aggressive type that certainly did progress during the long wait the NHS forced me to endure. A lot of the treatment I did finally receive was excellent, I should also add.

SummerCycling · Today 18:39
thank you, I’ll phone my nurse on Tuesday. She will know. Totally ruined my weekend getting this letter. Iv cried most of the day. Dosent help my partner has been totally unsympathetic with it. He just says, the dr will just be having a chat about my healing of wound, any bowel problems, future scans. I don’t know how many times I’m supposed to have follow up appointments in the first year. The oncologist signed me over to the specialist colon nurses when my chemo finished.
when I was discharged from hospital in August , the surgeon says she’ll meet up for a chat about scan results and so on.

Ah @SummerCycling I think I got the royal treatment! I had been a GP in the area for 25 years and my daughter was training in oncology locally and had just moved on from the unit that treated me. While it is lovely to be special it has the unfortunate effect of meaning that they offered me every known treatment for first my grade 3 triple positive BC then my grade 3 triple negative BC. I am at the point now where I think for my sanity I need a long rest from oncologists, lovely though they are here.
The Zolendronic acid has wrecked me this week. I feel weedy and achy and nauseated. I have lots of jobs to do before my minor surgery on Friday and all I can do is lounge around complaining. I’ve done some nice Easter baking so we are eating Simnel cake and lemon fairy cakes. Tomorrow is aromatic lamb with apricots and lentils.

@Shityshitybangbang I thing your partner is probably right. Your surgeon will just be doing a routine review of your bowel surgery, function and healing. There won’t be any earth shattering announcements. They will ask how you are, admire your scars and say “ see you next time”. They haven't a clue how those envelopes provoke such massive fear and how triggering it is going to the hospital. Hopefully your specialist nurse can put your mind at rest next week. It will all be fine! (My motto in hard times).

TopOfTheCliff · Today 20:23
Thank you for your kind words. You’re right about the envelope situation. At least my specialist nurse phoned me to tell me she’s sent me out a letter for my first year ct scan for August. So I wouldn’t get a fright. Xx

@Shityshitybangbang Scotland nhs is a mess. This is my 4th lot of cancer. Diagnosed May. 3 rounds of 3 weekly chemo starting June then August to December humming and hawing about surgery, then because such a delay another Pet scan only to show that its spread. December and January waiting on funding for immunotherapy being granted and treatment started February. 3 sessions and kidney issues. They're all so lovely at Forth Valley (oncology) and Glasgow Royal (surgery). Glasgow is massively understaffed its frightening. I hated going to all my follow ups and I dread the letters also. You do start toget you don't really think about it till a few days before but it takes time to get to that stage.

@Enigma52 I've decided not to go through with retirement as I'll still keep getting signed of and employer will keep paying into my pension plus I remain on half pay. Quite honestly I'm hedging my bets now and want to make sure if the worst comes to it that DP gets my death in service in service (x5).

I had been trying to embrace the dark grey hair but have entered fk it mode and by tomorrow I'll be very very blonde! But now, bed, so goodnight all.

Hi everyone, I'm here because on Thursday I went to the gynaecologist who found a tumour on my cervix and confirmed there and then it's cervical cancer. I feel numb inside but trying to act like I'm fine to not worry my family. I never had a smear due to severe health anxiety and trauma and now I'm here with a tumour that has possibly spread out of my cervix and god knows where else. The gynaecologist told me it's treatable and I'm not going to die anytime soon but being autistic my mind is finding it hard to believe like how can he tell just by looking at it? I'm waiting for my mri and ct scan appointment which he said can take 2 weeks and the Macmillan nurse is calling me on Tuesday to check if I'm ok as I went into complete shock when the doctor confirmed my fears.

My symptoms for the last 18 months were pink discharge which I assumed was ovulation, blood in urine where I was told it was uti or kidney stones and had a ct scan on my bladder last august and cystopacy(?) to rule out anything sinister, these all came back clear. I then had a random bleed in December so I had an internal scan in January which noted my cervix was normal and everything else was fine but I'm still confused how they missed a large tumour). I've also have lower right pelvic cramps and lower back pain which I thought was because I needed a new mattress. I had a mammogram last week as well which came back clear (thankgod).

I keep waking up and laying in bed wondering how long this tumour has been growing and having dark thoughts of death. I've been told by the doctor I will not be going on my July holiday now as I won't be well enough and that's depressed me because me and DD was really looking forward to it. I just feel like this situation is all my fault because I couldn't bring myself to have a smear test 😢

Don't blame yourself @catmomof3 - trauma is a real thing although people can't actually see it, if you'd felt able to go and if the NHS were much more responsive to issues around trauma than you would've gone. I had endometrial cancer but I would struggle to have men treat me because of childhood and adult trauma. Fortunately they've always been responsive to me in relation to female staff, but I have also needed to think about whether I could bear to be examined by a man, I don't think a lot of people understand it's not just not liking it, I would feel I was being assaulted and only severe dissociation would get me through it. Anyway, I don't think they can be 100% sure of things, but the gynaecologist will have had a lot of experience and I don't think they'd say things they weren't fairly sure about, but hopefully the nurse will be able to talk everything through with you on Tuesday. It is crap about your holiday, one of the surprising things that I found about going through everything was that the day-to-day stress of organising my life almost seemed worse than having the cancer in the first place, but you will hopefully get to a place where it's all over and life eventually goes back to normal, just try and build in little treats to yourself where you can. And right at the beginning is one of the worst bits, once you've got a plan things feel a lot easier.

@SierraSapphire The nurses with the doctor kept telling me the boss would never lie and if it's treatable he isn't lying. I think in all honesty that was the first time in my life my whole body went into shock and I had to be helped back to the other room to change as I lost all feeling in my legs where I sat there with the nurses shaking. I was told my case will be discussed this Friday at the MDT but they don't have any scans back yet because I've not had them so does anyone know what they will discuss?

I'm going to use rebooking my holiday next year as a driving force to get better and get through this, DD is doing her a-levels this year so masking like crazy as don't want this to affect her too much and I've told my parents to not talk about it around me right now as I want to remain as normal as possible. I'm guess I want to act in denial at least until I get my treatment plan and had all my scans. My mum will be coming to every appointment from now on.

Also Does anyone know what I need to ask for from my doctor to show I cannot go on my holiday as I need to claim back via travel insurance for my flights (luckily airbnb is refundable), Doctor mentioned what it was on Thursday but I can't remember. He said the airline should refund me based on medical grounds but I don't think BA gives refunds to non-refundable tickets.

Yeah, it is a big shock @catmomof3 - I think a lot of us feel like it's not something that should happen to us. Scans will be just to double check it's not elsewhere in your body I presume, so I'd imagine MDT will discuss your initial treatment, e.g. hysterectomy, which is likely to be the next step whatever comes back on the scans.

@SierraSapphire The gynaecologist pretty much ruled out a hysterectomy when I asked, it seems the tumour is too large for that. He made a point of saying this is what we usually see from women who never have smears. But until all the scans come back I won't know 100% the treatment just that it's looking very likely radiation will be involved. Just hoping I don't end up waiting too long as just want to start.

@catmomof3 I'm sorry that you find your self here. I'm posting in a rush but just wanted to say that many airlines have a serious medical exemption to their refund policies. I had non-refundable flights booked with a budget airline which I couldn't go on due to starting chemo. I provided them with a copy of one of my hospital letters which contained my diagnosis and that I was having chemo, and the airline gave us the value of the flights in credit, to be used within 18 months. It was much more straightforward than I expected. We did this rather than claim on our travel insurance as we had a large excess, but obviously your insurance may be different (or better) xx